Tales of Life with Multiple Sclerosis

Fatigue, Fatigue.......Oh & a bit more Fatigue!

2011-10-03T10:22:00.005+01:00

Oh my goodness, I have neglected my blog for ages :-( I have such good intentions but my body has other ideas!

Unfortunately I have been really struggling with fatigue over the past couple of months. It has hit me quite hard & I have had real trouble to keep on top of it.
I have found it very hard to get up in the mornings and then by the mid afternoon I will be finding it difficult to stay awake.
I've had fatigue most of the time I have been diagnosed with MS. Actually I would go as far as to stay that I have probably had fatigue for many years but not realised that it was fatigue.
I never really understood fatigue until I was diagnosed with MS & I had the experiences that I have had. I always just assumed it was being a bit tired and needing to catch up with a bit of sleep, but oh how wrong I was!!
When people spoke to me about fatigue, I knew that I have felt tired and have maybe needed more sleep, but the more it has gone on, the more I have really begun to understand it.
It isn't just a need to have a quick nap. It is a physical inability to be able to keep your eyes open. And over the past couple of months it has been much worse than it has ever been for me.
I have struggled to get up in the mornings and then when I do get up I don't have the energy to do very much. I have great ideas in my head of things that I would like to do in that day but I don't have the energy to achieve any of it. It is SO frustrating.
It's quite interesting how Martin can spot it coming on now! We can be sat down in the afternoon, maybe watching a program on television and he will suddenly say to me that I am falling asleep. I'll say to him that I am fine, because as far as I am aware I am fine......but he is normally always right and within minutes I will be asleep!
It's very weird not being able to keep your eyes open. And yes, I fall asleep, but it's because I just physically can't stay awake and that is something that is very hard to deal with.
It's like I have no control over it.........well actually I don't :(
It is strange, because I know that in the past, before being diagnosed, I have had situations where I have felt like this before, but I just put it down to the fact that I was working too hard or doing too much. I had never associated it with fatigue. I thought that it was how everyone felt when they were tired!!
When I was diagnosed, as far as I was aware, I hadn't had any symptoms apart from the ones that had taken me to the Doctors. The pins and needles and altered sensations in my legs that wouldn't go away. But when I look back now, I do really believe that I have had fatigue for a long time.

I have found a book called "Fighting Fatigue in Multiple Sclerosis" by Nancy Lowenstein Has anyone read this or can anyone tell me whether it's worth getting?

I don't take any medication for fatigue but I am seeing my consultant on October 17th so I am going to discuss it with him. All I am doing to help is rest as much as I can and I am trying to be sensible........but that very rarely works out!!
I am trying as much as I can to just continue with my life. But that means that there are things I want to do!
Martin & I have started swimming again. And that is something that I really enjoy.
I say I go swimming but really I just splash about! My arms work OK, but my legs aren't very good, I can't really feel them and I have no control over them, but I am working on that.
It does wear me out though. I am always exhausted once I have been and I know that I am unable to do anything for the rest of the day.
I am learning that there is a thing called opportunity cost - my psychologist has taught me that!
Say there is something that I really want to do, swimming, but I know that doing it is going to make me tired and so the cost of going swimming is that I need to rest before and afterwards.
It's really frustrating that everything has to be planned, because my body isn't strong enough to just do things on the spur of the moment. Or if I do decide to do something then there is going to be a cost to doing it and I will pay for it afterwards.
Oh the joys of MS!

I am not very good at resting though, I always think that I am just being lazy!
I know that that is ridiculous, but it doesn't stop me feeling guilty and frustrated!

I had a situation recently where Martin & I went away with two other couples for a weekend. We went to Center Parks at Longleat, it was a great weekend.
We went swimming in the pool and the others pulled me around the rapids too...........which was hilarious!
The only problem was that by about 9pm I was exhausted and needed to go to bed. The others generally stayed up and had a drink & played board games, but I just couldn't do it.
It was a nightmare for me. I know I was doing the right thing for me. If I had stayed up I would have spent the next day in bed, so by going to bed early I could enjoy the days with everyone, but why should I have to make a choice........why couldn't I join in with everything?
This is where I drive myself crazy!
I have been diagnosed for 9 years, you would think that I would have my head around all of this by now so why do things like this still get to me and frustrate me? Will I ever be able to deal with this?

On that note, here are some pictures of us at Center Parcs, it was a great weekend and we would definitely return.
They have great facilities for the disabled and everything is so subtle. It's not thrust in your face that you are disabled and maybe need something a little bit different.
Well Done Center Parcs!

Our Lodge

The Blackboard!

A Picture in the lodge!

Claire & Matt!

Joe & Rob!

The hiding telephone box!

Martin & me!

Best wishes everyone!
XxXxX

Ups and Downs!

2011-07-13T22:41:00.004+01:00

Life is full of Ups and Downs........it just feels that they are so much more obvious when you are living with MS!!

I had an appointment at the hospital yesterday.
It was a follow up for my eyes, to see what the findings were of the scan of my optic nerves etc. The results were good and the consultant (someone I've never seen before!) is happy that my eyes are fine..........at the moment! I say at the moment because we all know that things can change day by day with MS.
I had to remind myself of this when we came out of the appointment, because although I was delighted at my eyes being OK, I then started to question myself about the symptoms that I'd had. Had it all been in my head? Had I really had those symptoms? And why has nothing shown up when I felt the flickering nerves and the blurred and double vision that I'd had?
But that is one of the most annoying things about MS. You can have symptoms one week and then by the time you get scans or tests done, the symptoms may have changed and therefore not show up.
I hate this because it just fuels my paranoia about whether my symptoms are real!

Has anyone else been struggling with the heat lately?
I had an awful night on Monday night :(
I slept for about an hour, I then woke up and that was it until about 8.30AM! And then I only had about 2 hours sleep.
It was a really horrible night. I was hot, which in turn made my pain feel awful. It was prickly pins and needles, numbness and just plain nasty. I am trying to keep myself cool but the pain is just there whether I am hot or cold.
It's funny, I think about how warm it is now and then think about the Winter when it is nice and cold. BUT in the Winter I then have the issue that I am too cold and need to keep everything warm.......I just can't win!

Our long weekend at Centre Parcs is getting closer! Yay!! We are really looking forward to it.......can you tell?!?!?!?!
We've never been there before so it will be an adventure!! We are looking forward to just getting away and having a break. We aren't looking at doing too many activities.......other than eating, drinking and enjoying the company of our friends!!

And here is a piece of exciting news........a definite up time for us!! We, like millions of others, applied for tickets to the London Olympics. We, like millions of others, assumed we wouldn't get anything, but thought it would be worth having a go!
Oh how I'm glad we did!!
We applied for tickets for the athletics evening of August 5th 2012, which ends with the Men's 100 metre final. As I am disabled and I would be using a wheelchair, we applied for a wheelchair ticket and therefore Martin would come as my carer.
Can you imagine our surprise, amazement and disbelief when we received an email saying that "The application for one or more of the tickets we'd applied for had been successful"
AAAAAAAAGGGGGGGGGHHHHHHHHHHHHH!!!!!!
We then had this confirmed and yes we have tickets to go to the Olympics...........and not just that but we will be seeing the blue ribboned event that is the Men's 100 metre final!!
We know that it is only a 9.5second race, but we are there for the whole evening of events, which are:

Men's Long Jump Victory Ceremony
Women's 400m Hurdles Round 1
Men's High Jump Qualifying Rounds - Groups A & B
Women's Triple Jump Final
Men's 100m Semifinals
Men's 10,000m Victory Ceremony
Men's 1500m Semifinals
Men's Hammer Throw Final
Women's 100m Victory Ceremony
Men's 400m Semifinals
Women's Marathon Victory Ceremony
Women's 400m Final
Women's Triple Jump Victory Ceremony
Men's 3000m Steeplechase Final
Women's 400m Victory Ceremony
Men's 100m Final

Can you imagine the atmosphere?? I really can't believe that we have tickets!
The one thing I have always wanted is to go to an athletics event and I have always wanted the opportunity to go to an Olympics. Here I have my dream all in one go!!
We are SO lucky!! :)

Anyway, I hope you are all keeping OK.
Take care and keep strong!
XxXxX

Dystonia, Blepharitis, Vertigo...& MS!

2011-07-05T10:12:00.006+01:00

It's fair to say that I'm a little fed up at the moment :(

Over the past month I have been told that I'm dealing with Dystonia, Blepharitis & Vertigo & that is on top of the MS!
I'd never heard of the first two!!

OK, so Dystonia is "principally a problem caused by faulty signals being sent from the brain to muscles, which results in ‘co-contraction’ (opposing muscles working together. For example, when straightening your arm, the muscles that bend it and the muscles that straighten it, would work at the same time)" www.dystonia.org.uk

Blepharitis is an eye condition that affects the eyelids. The symptoms include

"itchy, sore, red eyelids
eyelids that stick together and may make it difficult to open your eyes when you wake up
eyelashes that become crusty, or oily and greasy
a burning, gritty sensation in your eyes
increased sensitivity to light (photophobia)
abnormal eyelash growth
loss of eyelashes
swollen eyelid margins (the edges of your eyelids)"

http://www.nhs.uk/Conditions/Blepharitis/Pages/Introduction.aspx

My eyelashes in my left eye point off to the left & my eyes water a lot. They are very sticky in the mornings and water a lot.

Vertigo is not being afraid of heights, although that is one definition!!

"Vertigo is the sensation that you or the environment around you is moving or spinning. It is commonly caused by a problem with the balance mechanisms within the inner ear.If you have vertigo, you may experience the sensation of movement even when you are standing completely still."

http://www.nhs.uk/Conditions/Vertigo/Pages/Introduction.aspx

Blepharitis - I had an appointment with an eye specialist. She was looking into they way my eyes move & whether they move together. She was quite happy with the way my eyes were, but while she was looking at them she pointed out that they were very puffy & that I had dry skin under my left eye. I had, what seemed to me, a very dark patch under my left eye - I just assumed it was very bad bags under my eyes!! She suggested that I go & see my GP & get them to check it out.
In the meantime she was fairly happy with my eyes but will see me again in a couple of months just to check again.
I also had a scan while I was there, this was of my optic nerves. The results of these get sent to the eye consultant at Torbay hospital, so I won't get these until the next time I see him!
I made an appointment with a GP at our surgery & told him what had happened & what I'd been told by the eye specialist. It didn't take him long to say that he felt sure I had a condition called Blepharitis.
It is a chronic condition, which in severe cases can be helped with antibiotics but my case wasn't in need of that. The doctor printed off some information about blepharitis, which included information about the condition, causes etc & also what to do to help manage it.
Basically the best way to manage it is to have good eye hygiene. Clean your eyes a couple of times a day & the best thing to use is baby shampoo! I have started doing this and I must admit that my eyes have started to improve.
It's inconvenient but not a major problem & is better than having gunky eyes!!

Vertigo - back in October of last year, I had my first experience of vertigo. I couldn't stand up without feeling like I was going to fall to the left. I felt very dizzy & quite sick. I couldn't walk without falling over. It was a really horrid experience & at that point I had no idea what was going on. It was a Sunday so we went to the local hospital to the doctor on call. He explained that it was vertigo. He said there was no treatment as such, just recommended bed rest for a few days until I felt better.
This definitely helped & after a few days it calmed down & I was back to "normal"!
So I kind of knew what I was dealing with when one Friday I started feeling a bit dizzy again. I've been having a few issues with my middle ear canal. My left ear becomes very muffled & I can't hear properly from it. This had started again on the Friday morning & by the afternoon I was feeling quite poorly.
But this was nothing compared to what was going to happen!
I went to bed on the Friday & woke up Saturday feeling much better - to my great relief!
I didn't think any more about it........until Sunday morning!
I woke up on the Sunday morning & while I was lying in bed I was feeling fine....just my usual morning aches, pains & foggy brain!!
I got up & went to the bathroom, which is about 10 footsteps away. I got there & thought that I felt a little bit strange. I finished & went back to the bedroom & was feeling worse. I sat on the edge of the bed & wasn't sure what to do.
The room was spinning, really badly. I couldn't focus on anything & I was starting to feel quite sick.
I tried to lie down, I just wanted to go back to sleep so that I didn't have to deal with it. But I couldn't lie down without the room spinning too.
I sat back up & felt really very sick. I had to get to the bathroom & sure enough, I was sick.
I thought that might help & I made my way back to the bed. I sat on the edge again & was trying to compose myself.
But I was still feeling very dizzy & very nauseous. So much so that I had to dash to the bathroom again. This time all I could do was retch. I wasn't actually bringing anything up.
I have to admit that at this point I was very distressed & really scared.
I'd never felt so poorly before.
Eventually after this had gone on for a while, I managed to get myself in bed, I could lie down now & I went off to sleep for a few hours.
When I woke up later I was feeling a bit foggy but a whole lot better than I had been earlier in the day.
I knew it had been vertigo. It was just a couple of days later when I saw the eye specialist, so I asked her if it could have been to do with my eyes. She asked whether I had any ear problems & when I explained about my middle ear, she was then convinced that that had been the cause, not my eyes.
So when I went to see the GP about my eyes I told him about the vertigo. He confirmed that it was vertigo & also agreed that the middle ear congestion was the probable cause. Although he did point out that vertigo can be linked to MS too.
He gave me some tablets to help with the dizziness & nausea & I have to say that they have been a god send! They are called Buccastem.

So within the space of a few days I was dealing with another couple of issues. I tried not to let it get me down, but I was disappointed. Just when I felt that I was getting on top of the issues that I was having with my MS - the pain etc, something else comes along to knock you back - but hey that's life altogether isn't it?!

Now on to the Dystonia!
Over the past months I have been having issues with my right hand. More so than usual & a lot of it has been at night.
My fingers have been going into spasms. To start with it was just my little finger & the one next to it. The pain would wake me up several times a night. My fingers & hand were feeling numb but with the painful sensations I have felt since my symptoms first started in 2002.
Then I would get this horrible sensation that would feel like my hand had a huge boxing glove on it. It was as though the hand itself was twice the size it actually is.
This was happening most nights & would disturb my sleep two or three times a night.
It had started in those two fingers but eventually it was affecting all the fingers on my right hand. They would spasm & the hand would close up. I couldn't open it out or do anything with it until the morning when, eventually, my hand would relax.
This was becoming a problem as it was very painful, it was constantly disturbing my sleep & it was actually a bit scary at times.
I was also having other problems with my hand. I would get odd twitches in the fingers & they would move of their own accord in spasms. I was also having issues writing. I could write OK but not for any length of time, it was almost like I was getting writers cramp but I only had to write a few sentences for it to start hurting.
I saw my MS nurse when I went for my Tysabri infusion one time, so I told her what had been going on. She feared that because of the boxing glove sensation being a new symptom that I was having a relapse, but because I don't respond to steroids, there was nothing much I could do.
She did wonder whether a splint might help keep my hand open at night, so she suggested that I call my OT & ask. I did that & my OT referred me to the splint clinic.
I eventually got an appointment through but it was for the spasticity clinic not the splint one!
I had the appointment with the clinic last week & it was a very informative appointment.
My referral had gone through to them because the splint clinic felt that because of the MS there was more chance of it being spasticity related.
I went through all that had been happening & explained all the issues I have. This included the spasms I get in my legs in the evenings, but my main priority at this point was my hands!
She explained to me that it sounded like I have Dystonia rather than spasticity. www.dystonia.org.uk
Spasticity is where the spasms & flickers are constant. Happening all the time, where as dystonia the symptoms are more random & they come & go. (I think I've got that right!!)

She examined my hands & arms & it was quite interesting, she spotted that on the top of my right hand, by the knuckle of my little finger, there is quite a lot of muscle wasting. I have a lot of problems with that little finger & it looks as though that could be the reason.
She felt that a hard splint wouldn't be much help as it would be too uncomfortable. But there were other options.
She found a hand grip for me that I could take away and try. You put your hand through it & there is a thumb hole. It then Velcro's across the top of your hand.
It isn't very big & is made of a fleece type material. The suggestion was that I wear it overnight and if my fingers went into spasm, they would rest against the grip & hopefully not go into a full spasm.
I have tried this & so far so good! It's not perfect but it definitely helps!
The other suggestion was a Lycra splint. It is like a second skin. We feel that this may be more beneficial and it would be something that I could use throughout the day, which would give me more strength in my hand.
I have said that I am interested in the Lycra splinting and am being referred to the department who deal with it, as it is specially measured for each person. I am hoping that this will give me more strength and more confidence to be able to do more with my hands. It may even help with the pain.
There is another suggestion too. It is Botulinum Toxin or Bo-Tox!
Apparently this has been used for a good few years to help with spasticity & Dystonia amongst other things.
The Botulinum Toxin gets injected directly into the muscle. It relaxes the muscle which in turn then relaxes the spasm. It lasts for about three months.
I am interested in this too but I want to try the splint first!

All in all it has been quite an eventful few weeks.
It is pretty frustrating, but I guess I just have to get used to the fact that these things are going to keep popping up.
After all, I'm not getting any younger and I do have MS which leaves me vulnerable to these other issues.
Believe me, I am struggling to deal with these things but I am also trying to not let it get on top of me.
Holding my head up high and looking forward to the positive things in my life - We go to Centre Parcs in about 8 weeks, with some good friends.........Yay!!

I hope everyone is doing well and enjoying these Summer months!
Love & hugs
XxXxX

MS Register!

2011-05-27T22:05:00.006+01:00

This post is to tell you about the new MS register that the UK MS Society has set up.
It is a short - 3 question - survey to fill out that will enable the MS Society to collect data about who has MS and where abouts in the UK people with MS are. The idea behind it is to enable better knowledge which will allow better services to be provided.
If the powers that be know where people are and what services are needed in that area then people are more likely to be able to ask for those services knowing they have the correct statistics to back them up.
For too long now the standard saying was that there were 85,000 people in the UK with MS. I've been diagnosed now for over eight years and that figure has stayed the same. It can't be right.
But without a register for people to sign up to, no-one has been able to change that figure with any certainty. Hopefully this register will allow them to do that. I personally think we might be in for a shock, when the real figure is announced!!

The following is taken from the MS Society website http://www.mssociety.org.uk/

The Register could

Revolutionise the focus of MS research, opening new avenues to explore
Get more accessible and targeted clinical trials for people with MS
Get new and highly accurate evidence to present to government
Get more targeted funding and support for people with MS
Support future research into cause and cure

But the Register will only work if enough people with MS take part. You can be a part of the big picture, by putting MS on the map.

We urge everyone with MS to join us.

Find out more and join now at http://www.ukmsregister.org/Portal/Home

So if you live in the UK and you have MS, please sign up to the register, it is really important and could help shape things in the future!

XxXxX

Birthdays, Weddings and Holidays!!

2011-05-16T11:29:00.006+01:00

It's May, the month of celebrations!!
May has always been a celebratory month for me as both mine and my brothers birthdays are in May.
Happy Birthday Simon........for yesterday!!
Then I met Martin, my husband, and his birthday is May 6th - Happy Birthday for then Martin!
And tomorrow it's my birthday!!
May 17th is a popular birth date, I know of four other people that have the same birthday as me!
My old dancing teacher, Jill, a dancing friend, Julia, a musical friend's dad, Mike and a beautiful friend of ours, Jeane!
I want to wish everyone a wonderful day, may it be as special as you all are!
And then there are the weddings. We have two couples who are close friends of ours. Joe & Rob got married last December 17th and Matt & Claire got married on May 7th. We both want to wish both couples a long and happy marriage.
Both weddings have been very special and we thank you all for letting us be a part of your special days!
And now for the holiday part of it!
Martin & I, Joe & Rob and Claire & Matt have booked a long weekend at Centre Parcs in Longleat. We are going in September!
We booked it last year, so it seemed a long way off but it is now starting to creep up on us and we are starting to really look forward to it now!!

Here are some photos of the weddings and of my birthday cake - I had a special one made this year & its amazing!!

Friends at Joe & Rob's wedding!

Joe & Rob cutting their cake!

Matt & Claire's wedding!

My amazing birthday cake!!

The weddings were both fantastic and my birthday cake is brilliant....one happy and spoilt girl!!!

Love & hugs to everyone
XxXxX

Eyes!

2011-05-04T18:44:00.003+01:00

The start of my year wasn't the best, but I would like to think that I have come quite a long way since then.
My pain issues haven't changed, but my attitude towards them have definitely changed. I am doing relaxation regularly now and I am sure that it has had a positive affect on me.
I can feel myself being able to relax myself during the day. It doesn't make the pain go away but it does help me deal with it a little better.
I am seeing my pain clinic doctor next Monday and I look forward in being able to tell him the steps I've taken to be more positive and pro-active!

Unfortunately, as well as being more positive I have also had some bad news.
I ended up back in hospital in February after I had a problem with my right eye, it wouldn't open properly. The eye lid itself was only opening about half way. I had a nerve flickering within the back of my eye. It felt really obvious to me but it wasn't visible. And I definitely had blurred & double vision.
I didn't know whether it might have been optic neuritis, so I went to see a GP at our surgery. She did some tests and checked my eyes, but she wasn't sure what was going on, so she sent me down to the hospital for me to get it checked out down there.
I ended up staying in hospital for another few days and while I was there they wanted me to see the eye clinic in the hospital. I had a visual field test and then I was seen by an optician who did quite a thorough check of my eyes.
He couldn't tell me what was going on but he was fairly sure that it wasn't optic neuritis.
It was left that another appointment would be made and for me just to see how things went.
I had that follow up appointment last week and saw the consultant eye specialist.
I had the visual field test again, but this time I found it much harder. My right eye felt like it couldn't focus properly so I found it hard to spot the lights.
After the test, I then saw the consultant. He did a really comprehensive check and sent me out for half an hour after he'd put some drops in my eyes to dilate them.
I went back in and he did some more checks and then gave me his conclusions.
Sadly he said that my eyes have been affected by the MS. The nerves in both eyes have been damaged by optic neuritis.
On the plus side, it's not too bad, but, of course we have no idea whether this is it or whether it
will get better or worse.
My peripheral vision isn't great with a mixture of blurred and double vision. And my eyes are very sensitive to light.
He's suggested reactor light glasses or tinted lenses and to wear a baseball cap in the summer! Which I actually do quite a lot anyway, I just didn't realise why I do it!
I was quite disappointed when he told me this news. I think because I had been told that it probably wasn't optic neuritis, I had put that to the back of my mind, so I wasn't expecting it to be that.

I am not dwelling on it though - or at least trying not to!!

We are continuing to be as positive and pro-active as we can.
We are continuing with swimming, which is going well, we are loosing weight - Martin has a head start but at least I have started now!!
And I have got back into making cards again. It is something I really enjoy, but I haven't done it for quite a while.
I kept thinking it was too painful and I didn't want to add to that pain. But one of the things my pain doctor said was that I shouldn't stop doing things I enjoy just because they hurt. I couldn't understand that to begin with.....why would I purposefully do something that I knew would cause me pain.
It is about quality of life and a thing that my psychologist calls opportunity cost.
Doing something I enjoy, but knowing that I will pay a price for it. The satisfaction I get from making my cards and the creativity I can use outweighs the pain that I get.......even though it really hurts!!

I must just add that two very good friends are getting married on Saturday - Matt and Claire, we wish you a wonderful day and a long and happy life together!
With love
Amelia, Martin, Barnaby and Kit Kat
XxXxX

Does anyone else have trouble with medications not working for them?

2011-04-17T14:50:00.004+01:00

So it's been another month or so since I wrote my last post!

It's amazing how time just gets eaten up, especially when you have a chronic illness that eats up your energy and requires you to rest and recuperate more than most.

It is true to say that the start of the year wasn't the easiest I have ever had, but with the support of my friends and family, I am getting stronger.

My symptoms haven't changed, which is annoying and disappointing, but it is my attitude towards those symptoms that has changed.

When I was going through my two stays in hospital in January and February, I was told several times that the pain I was feeling was very real but that because my mood was low, that was contributing to how bad the pain was getting.

I couldn't get my head around that at all.

As far as I was concerned, my mood was low because my pain was bad and not the other way around.

I was & am seeing a psychologist. I have had several sessions and find it really helpful to talk through the whole situation with someone who has no connection to me at all.

I was & am seeing the pain clinic too. They had prescribed several pain medications for me, but I have not had much luck with any of them. I have found that really difficult to understand. How can things work for some people but not for me?

I felt guilty, I felt that I was doing something wrong. But having talked it through with people, I realise that not all medications work for everyone. Everyone is different and sadly I am just one of those people who has a resistance to a lot of medications.

I know that I am not the only person who has this problem, I have just never met anyone else who struggles with it, so it feels very lonely.

At the moment I am on the following medications

Targinact - Oxycodone/Nalaxone 40/20mg twice a day

Oxcarbazepine 300mgs twice a day

Baclofen 10mgs in the morning and 20mgs at night

Oramorph - Liquid morphine 10mls as required 2 hours apart

Oxybutynin 5mgs a day

Paracetamol 500mgs as required

Ibuprofen 400mgs as required

Escitalopram 20mgs a day

Levthyroxine 50mgs a day

I know that these are doing something in their own small way, otherwise I wouldn't be using any of them, but I am still struggling with very severe pain, especially at night and especially in my hands and feet. My right side is worse than my left.

One of the things that was suggested to me was that I was referred to a pain psychologist. The lady that I saw explained that being a pain psychologist meant that she specialised in how pain affects us and how it is all connected to our psyche etc.

She left me with a folder with some strategies to help me cope with my pain.

One of those strategies has been relaxation. I was given a CD and I have to say that I have taken to it really well. I have been making sure that I have done at least one exercise a day. It means taking time out for yourself, which I found hard to begin with, but having felt the benefits of it, I am quite happy to make sure that I am doing it on a daily basis now. Even if that is just to help me get off to sleep.

That has been a real benefit. It has helped me to get off to sleep so much better now and even when I am waking up in the early hours and I am in lots of pain, I have put the relaxation on and been able to calm myself down and get myself back off to sleep. This is something that I haven't been able to control very well at all, but it is making a big difference to me now.

My pain clinic Doctor also said to me that I shouldn't stop doing things just because they cause pain. It took me a while to understand this, but what he meant was to keep doing things I enjoy even if I know it is going to cause pain for a little while. Otherwise where is my quality of life?

I make handmade cards and I hadn't made any for ages. I had put it off because it was causing me a lot of pain. But I have started doing it again because although I know it is going to cause me pain, the pleasure and enjoyment I get out of creating cards is much bigger than the pain.

Or that is the theory anyway!!

It makes sense and has lifted my mood because I am doing something I enjoy.

We have also started swimming. I haven't been swimming for years. I used to be a really strong swimmer and I loved it. It is such a good form of exercise, but because I can't feel my legs in the water and it felt really strange to not be able to just dive into a pool and swim lots of lengths, I couldn't bring myself to do it any more.

But an opportunity came up for Martin and I to start going and we felt we needed to take up this chance.

We have been going for about three or four weeks now and when we first started I could barely do a width of the pool. I had no confidence in my body and knowing that I can't feel my legs I just assumed I wouldn't be able to do much. But I was wrong!

I started off by managing a width. I couldn't really use my legs but I was able to use my arms to get me across the pool. I can't really call it swimming but I am moving in the pool and that is worth it's weight in gold.

We went again last Thursday and I really wanted to try and do a length. I had built up my widths to doing 10 widths the last time I had gone. I have to stop after each width and I panic a lot when I am losing control, but perseverance is paying off!

So I decided that I wanted to try a length. I stayed very close to the side, I had to stop three or four times, but I managed that length! I was so exhausted afterwards but the sense of achievement was amazing!

I have spoken to my physio about the swimming and she is going to come with us and show us some things to do in the pool that will help strengthen my legs and arms.

I am really excited about it. I know I am not going to get back to diving in and swimming 30 lengths etc, but at least I am exercising and working my muscles. It is very tiring and my legs are like lead when I get out of the pool. I can't do anything else for the rest of the day, but that doesn't matter!

Even if it's not helping my body - which I am sure it is - it is definitely helping me mentally because I feel that we are being very pro-active and that feels really positive!

So all in all, I am in a better place than I was a few months ago. Which feels great!

It has proved to me that as long as Martin and I are doing things we enjoy and that we are keeping busy, I can keep fighting this illness.

The pain hasn't gone and I can honestly say my symptoms are possibly more obvious to me now, but it is true that if you have a strong mind it can help to get you through.

The weather is getting brighter, the evenings are getting longer and I hope everyone is staying strong and still fighting!

Love & hugs

XxXxX

Difficult Times - Part One

2011-03-10T15:45:00.006Z

So January and February have not been the greatest.
Towards the end of last year I started to feel that things were changing and not in a good way. I was struggling a bit more with fatigue, but in a way that I could really feel it. My pain had started to increase quite substantially and as I suffer with pain quite badly anyway it meant that my pain was becoming pretty unbearable.
I also had a problem with my right eye. My eye lid had become very heavy and I was finding it hard to keep it open. To look at me, it was easy to see that my right lid was droopy. My vision wasn't affected but it felt very weird!
I was having some Physio sessions at the time and she saw my eye and I told her about the fatigue and pain etc. She really felt that I was having a relapse and so she didn't want to carry on with the physio until I had got past this blip.
We all hoped it was just a blip and that it wouldn't last too long, but that wasn't the case and unfortunately I am still struggling with all sorts of symptoms.
So anyway after a couple of weeks of things deteriorating, I had a particularly bad weekend.
very overwhelming.My pain levels were escalating, I was having badly disturbed sleep, my hands were agony, it felt like the skin was being stretched over my hands or that someone had taken a razor and slashed the skin. It was really awful and waking me up in the early hours every night. It was getting I couldn't get through a night without waking up in excruciating pain. It was a really difficult time.
As it was a weekend and the early hours, I couldn't get to a GP, so I called the on call doctors. The only thing that they could suggest was Diazepam - because of all the other medication I'm on. So my wonderful husband went down to the hospital at 4am and collected the prescription for me.
After the weekend, I spoke to several people, my MS nurse, my GP etc. I'd already made an appointment to see my consultant but that wasn't going to be until February 7th.
I was starting to get in a bit of a mess. I wasn't sleeping well, in fact I wasn't really sleeping much at all.
Later that week, on the Thursday, I was due to have an appointment with my Psychologist, which I was holding onto because I knew I would be able to talk it all through with him. You can imagine my disappointment when he called me to cancel the appointment that morning. I rang him back and he could tell I was in a bit of a mess - probably because of the tears I was shedding!! Anyway, he explained that he had a cold and didn't want me to get it, but he did say that he was happy to do a telephone consultation. So later that afternoon he rang me back and we had a good chat. He reassured me that I wasn't doing anything wrong and he said that he would call me again the following day to check up on me.
I had another awful night and I was at the end of my tether.
Part of my frustration was the fact that I should have been started on Sativex back in November, but I was still waiting for the prescription to come through. It was my pain doctor who was trying to put me on it, but I couldn't get to speak to him. That's why I went to my GP to get him to try and find out what was happening. In the meantime I had spoken to my consultant's secretary, who told me that he could prescribe it. So my MS nurse co-ordinated with him to get a prescription written, but I wasn't going to get it until sometime the following week.
I was trying to stay positive but when you know you are going to have to cope with unbearable pain and not knowing how to deal with it, it becomes quite unmanageable.
As promised, my Psychologist phoned me on the Friday afternoon and I told him how frustrated I was at not getting the medication I thought I was getting and not knowing what to do to get through this period.
I told him that I had even thought about going to A&E because I knew I needed help. He asked me why I hadn't gone, to which I told him that I didn't want to make a fuss!! He said to me that I had tried lots of different places to get help, that I was in a situation in which I needed help and if A&E was the last place for me to try then why didn't I go and ask for help. We talked through it and I realised that I had to do something as the weekend was coming up and I didn't feel that I could get through it without some medical help.
So on Friday 21st January at about 5pm Martin and I went down to A&E. After a bit of a wait I eventually saw the Doctor on call, who spoke to the medical registrar on duty and they agreed that they would admit me. I was admitted to an assessment ward and then the following day it was decided that they would do a course of steroids over the weekend and then on the Monday they would look at getting the pain clinic to see me.
I was in hospital for a week. I had a large course of IV steroids, which as usual for me, didn't do anything to help me. I was seen by my pain clinic doctor, who changed me from Oxynorm to Oramorph - liquid morphine and I could have that up to every two hours. He also wanted to try an infusion of something that is usually used for anaesthetic situations, but if it worked then it was something that could be done every 4-6 weeks. Unfortunately it didn't really do anything other than space me out completely!!!
After trying that he then decided to try me on Ketamine! Wow they were stuffing me full of strong, powerful stuff!!
The Ketamine made me feel sick and dizzy when I took it but they gave me an anti sickness tablet with it, so that helped.
By the following Friday, the doctors decided that there wasn't much more that could be done in hospital and we had a plan in place. My pain clinic doctor had made an appointment for me on the Monday, I had my consultant appointment the following week and I had an appointment booked with both my Psychologist and a pain psychologist in a couple of weeks and Martin had been able to pick up the Sativex so I would be able to start that over the weekend.
So I was discharged, with a truck load of drugs including morphine and ketamine!!

There is more to this story which I will continue in the next day or two, but I'll be up all night if I carry on now and my hands hurt!!

So this is...............to be continued!!
Hugs
XxXxX

Horrible Relapse :(

2011-01-19T20:33:00.006Z

This is where I really have to say that I HATE MS!

I have had a nasty couple of weeks that has really tested my composure and my spirit.
It started in the first week of January.
I thought I might be having another episode of vertigo. I was feeling really dizzy, sick and my head was spinning. But it didn't feel quite the same.
I still didn't feel right the following week, I was overwhelmingly fatigued, had no energy and had no real control over anything. My pain levels were increasing every day too.
I decided that I would go and see my GP and see whether there was any news on me getting my prescription for Sativex - the newly licensed Cannabis drug. When I saw my Doctor, he couldn't believe that I still hadn't heard anything from the pain clinic. Bearing in mind that I had seen them back at the beginning of November and had been told then that I would be getting a prescription for Sativex in the post.
It's now the middle of January and there is NO sign of it.
My Doctor had received a letter from the Doctor that he had written to but that was just passing the buck to another Doctor. No-one wanted to take responsibility for authorising my prescription.
What I found so frustrating was the fact that as far as I was aware, I had been told I was getting this drug. Not that it had to be authorised and may take some time before I would get it.
Anyway my GP said that he would continue to chase it, but in the meantime, I would just have to ride it out.
He advised me to try and get an appointment to see my consultant. I haven't seen him for almost two years, so apart from the fact that he felt I ought to have an assessment with him, he also suggested that I could be having a relapse, so he felt that talking to my consultant would be a sensible thing to do.
The following day I had an appointment with my Physio. Unfortunately I hadn't done anything over the Christmas period so we had to start again with my exercises on the gym ball. But that was OK, at least I was doing it now! I talked to her about the possibility that I could be having a relapse. She agreed that things had changed as in my fatigue was a lot more prominent and my pain levels had increased significantly. But she said not to panic and just to see how things went over the next few days.
I had another appointment with her the following day. Unfortunately things had changed again. I had a weird thing going on with my right eye. It wasn't a visual thing, but it was a nerve flickering in behind my eye. The eye itself felt really heavy too and you could see that when looking at my eyes. The right one was much more closed compared to the left one. It was like I couldn't open it properly. My physio came around again and she looked at my eyes. She felt at this point that it was almost certain that I was having a relapse. So we didn't do any physio.
There is no point in trying to work through a relapse as it will only make things worse. You have to rest as much as you can and just wait for things to get better.
She did encourage me to get some more sleeping tablets in a bid to break the non sleeping cycle that I was in and with the hope that this would speed up the recovery process. I'm very wary when it comes to sleeping tablets but they are there to do a job and I do realise that.
Unfortunately for me, things were only going to get worse.
On Friday I went to bed, having taken my usual medications including pain killers and the sleeping tablets. I woke up at again at about 4.30AM with the most excruciating pain in my right side. Particularly my right hand and arm. But I also had pain in my legs and feet and also the right side of my face was very sensitive.
The pain was incredible. I have always suffered with pain, but this was something else. It took my breath away, I was actually hyperventilating, it was causing me so much distress.
I was so scared.
I didn't want Martin to call anyone though, I'm a bit strange like that! I would rather wait and see what happens. So Martin got me downstairs, calmed me down and within a couple of hours we went back to bed and I managed to get back off to sleep.
I got up about 12pm on Saturday. We were due to be doing some singing in the evening. But as I wasn't feeling great, one of the other girls had no voice and one of the guys wasn't available, we had to pull out of that gig.
It was probably a good thing as I was in bed by 8pm on Saturday night, feeling really really poorly. I had taken all my meds, including pain killers and sleeping tablets.
Sadly at 3AM I woke up again in excruciating pain. Once again my hands were horrendous, the pain was just awful. This time I decided that I couldn't just carry on and hope it would stop. So I called the duty Doctors on call. It is very hard talking to a Doctor that doesn't know your situation and perhaps doesn't know a huge amount about your particular illness. Martin and I had wondered whether to go to A&E, but I hate to make a fuss and I always feel that there isn't a lot that they can do anyway.
So having spoken to two of the Doctors on call, I was prescribed Diazepam. This was all they had to offer considering all the pain meds that I currently take.
Martin went to the hospital to collect it for me..........Thank goodness for my amazing husband, I'd be so lost without him.
I took the Diazepam and managed to sleep again, not surfacing until about 1.15pm the following day and that was only because Martin woke me up!!
I took the Diazepam again on Sunday night and although it didn't stop me waking up in pain through the night.....4 or 5 times actually, by taking it I was able to get myself back off to sleep, which did help.
While all this had been going on over the past week, I had also been able to get myself an appointment with my consultant. I am seeing him on February 7th. And while I was making the appointment, I was able to find out that he is able to prescribe the Sativex that I have been having so much trouble in getting hold of.
So yesterday I decided that it might be worth contacting my MS nurse. No disrespect to them, but they don't really know how to deal with me and the pain that I suffer with. So that was why I hadn't contacted them sooner. But after the weekend that I have had, I really needed to speak to them and see if there was anything that they could do to help. I said to her that I was so desperate that I just wanted to be knocked out and woken up again when it was much better. I realise that this sounds very self pitying and that is not how I am at all, but when you have this sort of pain so constantly, it really wears you down and you cannot see any light through the tunnel at all let alone at the end of it!
Anyway having spoken to the nurse, she was going to try and contact my consultant and see what he could suggest. She wasn't able to get hold of him yesterday but she rang me today having managed to speak to him.
I am delighted to say that he is doing a prescription for me for Sativex. I will either be getting it in the post or it will be sent to a pharmacy that I can collect it from.
I am so relieved. I know I can't pour all my hopes into this drug, I may take it and it doesn't help at all, but I have to believe that it is going to help me in some way.
I have to admit that these have been some of the hardest days that I have had since I was diagnosed. It is very scary and really does mess with your mind, but I would like to think with the support I have from family and friends including friends on Facebook and Twitter, who have been amazing, that I will get through this period and come out the other side.

Thank you to everyone for your support. Whether you have MS or you know someone with MS, the help and support that you give us is so invaluable. It's what helps keep us strong and gives us the ability to fight this horrid illness.
Thank you!
XxXxX

Happy New Year to One & All!

2011-01-10T13:52:00.004Z

Happy New Year to everyone!
I'm sorry it's taken me so long to get round to wishing you all the tidings of the season!
I hope you have all had a good festive season and that it hasn't taken it's toll too much.
We had a lovely one.
It ended up being unplanned and really enjoyable.
Because of the weather, friends plans had changed and we were invited to join them on Christmas Day!
It was a really wonderful day...........Thanks Joe & Rob!
They had got married on December 17th and it was a beautiful day. It snowed and the setting was just stunning. The day itself was wonderful, beautiful memories made for all of us who were there.
And we have another one to look forward to in May..........Matt & Claire - I thought a countdown might help!!

So with the festivities of Christmas and the New Year all over now, it is time to look forward to 2011.
I am slightly frustrated............no actually I am going crazy!
Back in November I saw my pain clinic Doctor. We discussed the medications that I was on and I conveyed the fact that I was still suffering badly with neuropathic pain in my hands, feet, lower back and arms. The decision was made that I would be put on the new Cannabis drug - Sativex. Of course the high is taken out of it and it is all legal! But it has been seen to be helping a lot for people with severe neuropathic pain. So I agreed straight away.
I was told to slowly come off Oxcarbazepine - one of my existing medications, but if I felt that I needed to stay on it, that was fine and I could continue on it.
My Doctor told me that he would send me the prescription for Sativex, so I was under the impression that I would have it within about 6/8 weeks.
By mid December, I still hadn't had anything and I was getting pretty desperate, so I went to see a GP at my surgery.
I had tried to call the pain clinic, but they just told me that they were waiting for another Doctor to sign it off. I couldn't speak to the pain clinic Doctor as they were too busy, but they would talk to GP Dr's.
I spoke to the GP about it and told him that I was at the end of my tether and didn't really know what to do. He assured me that he would write to the Doctor that we were waiting for to sign off the prescription and he would also chase up the fact that I should be seeing a pain psychologist. I have had that appointment confirmed now, but I still have no new medication.
I have continued on with Oxcarbazepine. There is no way that I could come off that and have nothing to help me......I do have a couple of other pain meds, but nothing strong enough on it's own.
I don't really know what I am supposed to do next. I hate moaning to the medical profession, but does that mean that I am supposed to just sit and suffer with the pain that I am in??
That also sounds so self pitying and I hate that. I am not one for feeling sorry for myself but in this instance I do feel I have a bit of a case!!
And by writing it on here, I am not bending Martin's ear about it!! He takes so much from me and he never complains to me. It is one thing that I am SO grateful to him for. He is my rock and I love him SO much.
I have had a bad weekend. Since about last Thursday, I have been feeling quite dizzy, sick and overwhelmingly fatigued. I thought to start with that it may be another episode of vertigo, but I'm not too sure. It hit me really hard on Saturday, I was in bed by 4.30pm and I didn't get out of bed on Sunday until 2pm..........and that was only because I needed my medications.....and a cup of tea!!
I had another rough night last night. I went to bed about 10pm, but couldn't sleep. I was still awake at about 3am and with lots of pain in my hands. It gets so frustrating and that makes sleeping even harder!
I eventually got some sleep and got up again about 11am this morning. But am still not feeling too great.
I think I may try and see a Doctor tomorrow as it's been going on for a while, but I don't like bothering Doctor's too much. I guess I can talk to them about the pain issues and see whether they know any more about the Sativex situation.
I'll let you know what I do/what they say!

And coming away from MS, we have a couple of singing ventures coming up. We are helping out someone who is doing their own gig. While he has to do some costume changes, we are going to sing a couple of numbers to fill in time. It won't be too taxing but it should be fun! It will be good to get the lungs working again!

Anyway, I wish everyone well, I hope the new year is a happy and healthy one.
Love & hugs
XxXxX

What a week..........!

2010-12-09T16:19:00.004Z

Hey everyone,
Well what a week I have had. Actually, it has been the last couple of weeks really.
This damn MS is driving me crazy & then when you add in the cold, which causes the pain to intensify, which leads to fatigue and sleepless nights and oh, then we start the process all over again when a new day starts. As you can tell, I haven't been a happy bunny recently :(
I am still waiting to receive my prescription for the new medication, Sativex. I saw the pain clinic at the beginning of November and I was lead to believe that I would have had the prescription sent to me by now. So I am more than a little frustrated that I haven't had it yet.
I phoned the pain clinic, but they are waiting for authorisation to prescribe the drug and no-one can tell me when that will happen. I couldn't even speak to my pain consultant because they are so busy and they aren't allowed to phone patients back! I am not one to complain or to make a fuss to get what I want, but I am at the end of my tether.
I just want to be knocked out and for someone to wake me up when it is all sorted. But that's not going to happen eh?!!
So I ended up going to see a GP and asking for his help. He couldn't believe that I hadn't had this drug yet and I knew that he would be pro active in getting the situation sorted out.
He is going to contact the Doctor who is doing the authorisation and try and get things sorted out before Christmas. So fingers crossed.
I have been struggling SO much with my pain. The cold hasn't helped and I know that I can't do much about that apart from keep myself wrapped up warm. But the pain has been so bad that it has literally been taking my breath away.
My hands are horrendous. It makes doing anything really hard, because whatever I do causes pain. Even just sitting, hurts. It has been a burning pain, sometimes it feels as though someone has been slashing my hands with razors. They get really cold, like ice blocks and then it feels like they are being stabbed with pins. It is just an ongoing thing that is all day, every day and has been really wearing me down.
I have been waking up between 3 & 4am every night, in lots of pain and then not being able to get back to sleep again. And when you are sleep deprived, it makes everything seem so much harder to deal with.
It has been so bad and unmanageable that I went to see my GP and asked for some sleeping tablets. It goes against everything I want to do, but I need to break this cycle I am in, so I have only been given two weeks worth.
I am looking at it as an aid to help sort out my sleep pattern and once that is done, I will stop taking them. I am actually finding it hard to take them each night because I just don't want to but I hate to admit that it is starting to help!
The pain hasn't just been in my hands either, there is my lower back, my legs and my feet too, so there is just no let up anywhere!
I would just like it to stop now! Maybe Santa's listening??

I am trying to stay positive.......although Martin has taken the brunt of my frustration. Bless him!
I am looking at the things to look forward to. We have our trip to see The Polar Express, I am going to a craft fayre on Saturday to help a friend sell his photo cards, but I am also going to be selling my handmade cards to raise money for the local MS society too and next Friday I have a wedding to go to. My best friend is getting married and it is going to be amazing!
Of course it is also Christmas, which is always a wonderful thing!
So I keep reminding myself that there is lots to be happy about and I need to try and take the focus away from my MS.
We have our tree up and it looks beautiful.............even if I say so myself!!
We have reorganised our lounge a bit and tidied up quite a lot, which makes me feel quite good. We haven't had a big tree up for the last few years because of the way our lounge is set up, but this year we have made room for it and so the six foot tree has come out! I had forgotten how big it was and it looks really lovely! Very Christmasy!!

I am having Physio at the moment too. It started off because I am changing the crutches that I use. I have been using elbow crutches since about 2003. Eventually I bought myself a pair with comfy handles because my hands were really struggling with the hard ordinary handles.
Then when I started seeing my Occupational Therapist, she suggested that it might be worth looking at changing my crutches to gutter crutches. They have a strip of material for you to rest your arm in and then handles that you just gently rest your hands on. It changes how you walk with them. With the gutter crutches it feels like a skiing motion.
I have been going to the hospital to see my Physio for the last ten days. This is just so that I can get used to the new crutches before I go out with them. I didn't want to go off and have a fall or something and then not have the confidence to use them.
I am getting on really well with them and I think they are going to help my hands a lot. It takes the pressure off them completely and that is just what I need.

I do feel a bit strange with them and you don't see many people using them, but if they work for me and help with the pain I get in my hands, then I am not going to worry about what I look like!!
I'll let you all know how it goes!!

Anyway, I hope everyone is doing OK and that the cold isn't affecting people too badly. I hope the Christmas preparations are coming along well............Thank God for the Internet eh?!!
Take care one and all,
Love & hugs XxXxX

Tysabri Number 19.......and it's very cold!

2010-11-27T00:02:00.004Z

Hi everyone!
I guess I should say Good Morning, as it is 12.04AM!
I have had my Tysabri infusion today. It was number 19.
I find that very strange! 19 times, I have had a needle put in me. Actually, I have had far more attempts than 19. When I first started having the infusions I was having a regular cannula. My veins are a complete nightmare and the nurses would need several attempts to get the cannula in.
This became a real struggle for me. It wasn't just the fact that they couldn't find the vein, it was when they put the needle in, it was SO painful for me.
I suffer very badly with pain. My skin is incredibly sensitive and I experience a lot of neuropathic pain. It's one of the great anomalies of MS. You could have a dozen of us in one room and only a handful of us will actually suffer with pain.
I'm always amazed when I speak to other MS'ers who don't get any pain at all.
How can that happen??!!
I got to the stage where I needed something to change. I couldn't carry on having the infusions if I had to be canulated. It was causing so much stress for me. The infusions are every four weeks and I would start worrying about it with two weeks to go. It's fair to say that I couldn't handle it!
One of the nurses asked me why I didn't have a portacath? I had no idea what a portacath was! It was explained to me that it is a port that is inserted under the skin. It is attached to a vein so that when the infusion is done, the nurse just has to put the needle into the port and the infusion is hooked up.
I followed this up and in September 2009 I had my portacath inserted above my right breast. Having the portacath has made a huge difference to me and has allowed me to continue having the Tysabri treatment.
So here we are in November 2010 and I have had 19 infusions. I have to say that I believe that it is possibly helping my MS.
I don't feel any different, I have all the same symptoms that I had when I started, which may sound strange, but I guess the positive thing is that I am not having many relapses.
The way I look at it is that it is keeping things under control. It may not be as much as I want but it is better than nothing!!
I read an article about Tysabri to do with the longevity of it. It is the one thing that really bothers me.....other than the PML issue! Because it is relatively new, no one knows what effects it will have long term.
The article I was reading suggested that if you have been on Tysabri for two years, it may be worth looking at taking a break from it for a little while, this would then possibly reduce the risks of getting PML. (PML is a rare brain infection that is known to be associated with Tysabri).
Obviously if you take a break, then you are opening yourself up to having a relapse, but in my eyes, I would prefer a relapse to the risk of having PML.
I talked to my MS nurse about this, but she turned down the idea straight away. She told me that although my body is tolerating Tysabri at the moment, if I took a break, then there is no guarantee that my body would accept it again. And as there isn't anything else at the moment that I could transfer to, so they wouldn't want me to come off it.
I understand that! I did say about my concerns of the risks of getting PML, but she assures me that the risks are minimal and they monitor me closely for any signs.
I have to trust that my consultant and the MS nurses have my best interests at heart. They are going to do what is best for me. And that is really important for me to remember. It is very easy, as the one who has to go through the treatment and has to deal with the illness, not to always look objectively at a situation.
So I had the infusion today and for some reason, whenever I have it, it knocks me out. I get really really tired and I know not to arrange anything for the next 24 hours or so.
I can almost feel it, once the infusion is up and running, I feel my eyes getting heavy and my body deflates!
The nurse was saying to me today, that we don't know why it affects me the way it does. It's not something that happens to any of the others who have it. But then I have always been a little bit odd!!
So I always have to have someone with me because I know I can't drive myself home. It's one of the reasons that Martin became my carer!
We got in the car to come home and within about 15 minutes, I was fast asleep. I knew it would happen. It was as though a fog had come over me.
Once home, we had a cup of tea and then by 4pm I was in bed fast asleep! I woke up again about 11.15pm, in need of another cup of tea.
Hence the reason I am up and writing this post. Of course it is The Ashes on in Australia at the moment, so I am able to watch a bit of the cricket too..........come on England!!

It is so cold at the moment. And as it is the start of winter, it's only going to get colder! That is a scary prospect!
It is something that does affect the MS pretty badly. But then extreme heat does too, so I can't win!
I hope everyone else is tucked up nice and warm and not suffering too badly. The one positive about this time of year is that it's CHRISTMAS TIME!!
Martin and I are big Christmas fans. We love this time of year and get very excited!! We have already planned our annual outing to go to the Birmingham Imax cinema to see The Polar Express in 3D! It is a wonderful film and it means a lot to us, to be able to see it in it's full glory at Christmas! Happy times!!

Take care everyone, keep warm and keep happy!
Love & hugs
XxXxX

2010-11-17T20:24:00.003Z

Hi everyone,
I'm having a really fatigued day today :(
Part of that is because I said goodbye to my Dad today, as he went back to work.
My dad is a Captain in the Merchant Navy. This means he works on cargo ships. (The big ones that you see out at sea) He generally works around the British Isles, Ireland, Germany, Scandinavia and the Mediterranean.
So he has gone away today and he won't be home again until about February next year.
I have grown up with my Dad doing this job. He has had breaks from it every now and then but the majority of his working life has been on the sea.
I find it so much harder to say goodbye these days. I guess because I am older and he is older and it means more now.

So I am warn out today. I am also struggling with pain a lot today. That zaps loads of my energy too. I am trying so hard not to let it affect me, but it is taking up all my energy to do that.
It is SO cold too. I know I am tired and so I feel the cold a little more because of that, but it also affects my pain too.
Does anyone else have that? When it is very cold in Winter or very hot in the Summer, I suffer even more with the pain. People ask me which is worse, hot or cold, but I can honestly say that both cause me problems!
How annoying is that??
Anyway it was just a quick post today to wish my Dad a safe voyage!
Hope everyone is coping well with the cold,
Love & hugs
XxXxX

PS I must say a quick Thank you to all those who have been leaving comments for me. I really appreciate hearing from people and I do read all the comments.....even if I don't always reply to them.......sorry!!!
XxXxX

Holiday Photos!

2010-11-15T20:42:00.008Z

Not really a post today, just some beautiful photographs that we took while on our canal boat holiday in October.
We had a week on the Shropshire Union Canal where we went from Audlem up to Ellesmere Port and back again. We went with a company called Cheshire Cat Narrowboats, we can't recommend them highly enough.
http://www.cheshirecatnarrowboats.co.uk/

We stopped off at Chester Zoo, we looked around the waterways museum in Ellesmere port, we met some friends in Chester - yes Deb, that's you!
It was a fantastic holiday. If you have never been on a barge holiday and you fancy it, then they are the best! And even as a disabled person, I am still able to enjoy it.
Admittedly, I have two men with me who do all the hard work, but that's what a holiday is all about isn't it??!!
XxXxX

The Wet Room Story and photos!

2010-11-14T17:16:00.012Z

I just want to send out thoughts to all those who have given their lives for us. In past conflicts and ongoing ones. They will all be remembered.

I have had a "tired" day today. I didn't sleep that well last night, but part of that was my fault. I am really enjoying the book I am reading at the moment - Tess Gerritson's Girl Missing - and I was reading until late last night. That doesn't lend itself well to getting a good night's rest!
We also got up fairly early because we had free tickets to go to the cinema and see a film that hasn't yet been released. I was very proud of myself though because I managed to stay awake throughout the film. Quite often when we go to the cinema, I don't manage to keep my eyes open, which gets very frustrating.
Talking about cinemas....does everyone know about the CEA card.
This is the Cinema Exhibitor's Association card.
It is a card that is available for disabled people to apply for. The card allows you to get one free ticket for a person accompanying you.
To apply you must be in receipt of either Disability Living Allowance or Attendance Allowance or you must be Registered Blind.
For more information please check out their website
http://www.ceacard.co.uk/

So I told you that I would finish the story of our Wet Room.
If you look back on my posts, you will be able to see the first part of the story.
In short, we had discussed our needs with my Occupational Therapist & she put a referral in to social services. Between my OT, the social services OT & us, an application was put together. It was a comprehensive application, in which several top pieces of equipment were asked for. It was all equipment, if it was granted, would make our lives a whole lot easier.
It was about nine months from when I had started seeing my OT, to when the application was put forward.
We thought it would be at least six months at the earliest before we heard whether the application had been granted. You can imagine our surprise when within a couple of weeks we had the go ahead for the wet room. And on top of it being fast tracked, we were going to get all the equipment that had been asked for. This included a body dryer, a push button shower, a glide about chair and a Geberit toilet.
The work started on September 28th and we went to stay with my Dad. This allowed the work men to just rip everything out and not worry about needing to keep a working toilet available!
We documented the process, you can see the photos below. I am so glad we did this, because I keep looking at the photos of the bathroom we used to have and I keep realising just how lucky we are.
I can now shower whenever I want to.......as long as Martin is about. But what I mean is that I don't have to plan my day around it. I don't have to limit what I do for the rest of the day after I have had a shower. Now I have a chair so I can sit down and shower. I don't have to climb into the bath, which used to wreck my legs and cause me lots of pain. With having the body dryer, I no longer have to use a towel to dry. This used to cause lots of pain in my hands & over my body. The sensation used to drive me crazy!
And the Geberit toilet is AMAZING! It is what is called a shower toilet or a bidet/toilet. It has made me feel so much more hygienic.
It really has made such a difference. I can't recommend it highly enough.
We really didn't think we would get it, but I am so grateful to my OT, the social services OT, the local council and the contractors who carried out the work.
It really is worth contacting people and asking the questions about what you need and what is possible for you to have. We never thought we would get something as wonderful as the wet room that we have but we got it. And it was fast tracked, so we got it really quickly.
You see some things really are possible!
XxXxX

MS Trust, Open Door publication!

2010-11-13T13:25:00.008Z

Hey everyone,

Well yet again, I have had some time out from writing my blog.........I have slapped my hands.........and it hurt!!

So those of you who follow my blog or who have read any of my previous posts, will know that I wrote a post a while ago about a procedure that I have started called Peristeen.

Well, the MS Trust read that piece and thought I had tackled it really well. They asked me if it would be OK if they could publish the piece in their quarterly newsletter called Open Door.

I agreed because I had already made the decision to publish it on my blog, so I wanted people to see it. This would get it out there for many many more people to be able to read it. It's not that I want people to know about me, what I want is for people to learn about Peristeen and the fact that there are possibilities out there.

So they took the piece and adapted it.........but only slightly.

I knew that it would be coming out in the November issue of Open Door, but I hadn't really thought about it much. They had asked for a couple of photos, which was fine.......I don't mind getting my mug out there!!

In my mind, I had thought it was just going to be a small piece in the corner of a page. Obviously, I know that the piece is quite long, after all, I wrote it!

But I still didn't expect it to be a big two page spread in the newsletter, with three photos!

Constipation is a difficult subject to talk about, but I am so proud of this piece and I am proud that I have put it out there. If it helps just one person to ask the questions about this procedure or to open up about their own problems and get it sorted, then this will definitely have been worth doing.

If you don't get the MS Trust newsletter, then you can see the piece on their website at the following link.

http://www.mstrust.org.uk/information/opendoor/articles/1011_12_13.jsp

I have to thank the MS Trust. They have made me realise that being open and honest is a good thing and that it is the only way that we can all help each other in the battle against this awful illness.

Never be afraid to talk about your issues, there are always people out there who can help you or who are likely to be going through the same thing as you as well.

I have so much more to talk about!

I have had a busy couple of months with getting my wet room done and going on holiday. So expect to see me a little more on here! My wet room is an exciting little story and I have photos from beginning to end, so that will be my next post!!

I hope everyone is doing OK, especially with the colder weather that is now with us. I look forward to hearing from you all,

Love & hugs

XxXxX

Wet Room Application!!

2010-09-20T21:32:00.007+01:00

Well, I said on my last post that I would write a post about my wet room application. Little did I know that the application was being dealt with and would be going through VERY soon!

I'll start at the beginning!

I have been having trouble having a shower for quite some time now. Because our shower is over our bath, I need to climb into the bath to be able to have a shower. That in itself has been a problem for a few years but over the past couple of years, I have had problems standing in the bath, washing my hair, getting in and out of the bath, towelling myself dry...........let's just say, I have had numerous problems with bathing.

I started seeing my Occupational Therapist in November 2009 and in December she put in a referral for social services to come and assess my need for a wet room.

At first, it didn't look good, because social services wanted to try and do as little as possible to resolve the situation - what I mean by that is they wanted to spend as little money as possible. I was quite frustrated by this, because my OT had already done an assessment and come to the conclusion that a wet room was required!

A few months later, I had an appointment with a social services OT. She agreed that a wet room was the best solution and together, with my OT, an application was put together.

This was done after we had all been to a local independent living place, so that we could see what was available and what would be required to suit my needs.

This was worthwhile because we came across some brilliant equipment.

There is the most amazing toilet. It is called a Geberit Aquaclean - check it out at http://www.geberit.co.uk/geberit/inet/uk/wcmsuk.nsf/pages/prod-aqua-1

It can be used as a regular toilet, but it also has some amazing extras! It can wash and dry and it has a sensor flush so I don't even need to push a button! It is self cleaning and looks like a "normal" toilet. I was able to try it (behind closed doors) and I was gobsmacked. I didn't even know something like this was available!

We were also shown a full body dryer. This is ceiling mounted and so I would be able to sit underneath it and get dry without the need for towelling myself and the pain that that has been causing me.

They also had push button showers. These mean that I don't have to turn taps on, which I am unable to do at the moment. It is all programmed on the unit and I then press the button which starts it all off!

It was also recommended that I would need a glide about chair. This is basically a chair on wheels, but it would mean that if I am having a particularly bad day, Martin can get me in the chair and wheel me into the wet room. I can then sit under the shower and sit under the body dryer.

The wet room would have a non slip flooring too.

The idea of all this, just blew me away. To be more independent with my bathing needs and to have equipment that would save me some pain, I just couldn't get my head around it!

So the application was drawn up and checked over. All these things were asked for but I didn't expect to have it all authorised. I know money is tight for social services to do these things.

A few weeks ago, I had the application sent to me for myself and my OT to check over. After a few changes, the application was then sent to the relevant department.

I was under the impression that the process of the application being looked at and gone through would now take up to six months.

I had a phone call last week, someone from the council wanted to come and look at the bathroom, do some measurements etc. We made the appointment, not really understanding what to expect.

The gentleman came last Friday.

He had various forms for us to sign and he was talking as though the work could start very quickly. They have a system now that allows certain applications to be fast tracked. We signed all the forms, still not believing that anything would be happening too soon.

He said he would speak to their contractor and let us know when they would want to come back to our property for the contractor to look. Again, we didn't think that this would be too soon.

You can imagine our surprise when we got a message to say that they would be here on Monday morning (today) with the contractor.

We still didn't really know what this meant or when the work was likely to start, even if it had been authorised.

They arrived this morning and luckily I already had an appointment with my OT, so she was here to check what was going on and ask any relevant questions.

They went up to the bathroom and were measuring up. They were talking about all the relevant bits of equipment and what would need to be done to fit them in.................we have a tiny bathroom!

You can imagine my shock, when I was told that the work will be starting next Monday!

I burst into tears! I have waited so long for this and to be honest, I thought it would be at least another six months before any likelihood of it starting. It also looks as though we are getting all the items of equipment that have been asked for too.

I can't believe it!

To have some independence back and to have all the hygienic items to help me feel so much cleaner (especially with all the toilet needs I have - see my Peristeen post). It's just amazing!

I have the utmost respect for my OT, social services and the people who are carrying out the work!

XxXxX

Relapse or No Relapse??

2010-09-16T18:44:00.009+01:00

When and how do you know when you are having a relapse??

I have always had an issue with this. I have symptoms every day and yes sometimes it can be really obvious when you are having a relapse. One of my first relapses in 2003, I lost my mobility. I couldn't move my legs properly and from that time onwards I have had to use crutches. I am also using a wheelchair, at times, now too (with much reluctance!).

That relapse was very clear to me, but I have had plenty since then that I am unsure whether you would call them a relapse or not.

I had one in June that I was sure at the time was a relapse. I had increased pain & fatigue. I started getting really heightened spasms and had to start on Baclofen. It was at this point where my constipation was very bad and I had to start on the Peristeen system (see my Peristeen post).

I had an MRI shortly after this started and when I got the results at the beginning of September, I was told that no new lesions had shown up. This of course is good news, but it made me question whether I was making all my symptoms up?

At the end of August, I have started having more increased symptoms, which I am now sure is a relapse (it is still ongoing). It's just a shame I can't have another MRI scan as I feel sure something would show up!

This time I started off with a weak bladder. I felt the need to be going to toilet a lot more frequently than normal. This started at the beginning of a week. On the Friday of that week, I had really bad pain in my eyes. The eye sockets were painful, it felt as though they were bruised. Also when I moved my eyes, I felt pain and quite sick. It also gave me a really bad headache. This continued over the weekend and then on the Sunday, I started getting a really bad spasm pain in my right hand. I found it really hard to use my right hand for anything because of the spasms, and the pain I experienced in that hand was quite unbearable.

It then proceeded to affect the whole of my right side. I had a shower and when Martin washed my back, you could have split it in half. The right side was numb but painfully so, where as the left side was the normal altered sensation for me.

I have since been feeling worse. My right leg feels like I am lifting around a ton weight. I am really fatigued and experiencing heightened pain...................again!!

Another thing I know is that I have been really busy lately! I have been doing a lot of singing which, of course, is something I love, but has that contributed to how I am feeling?

And have you noticed how the Doctors leave all the decisions to us? I know that we have to have the right to choose but sometimes, I just want someone to tell me what to do!!

I do find it really hard though because I am still questioning whether I am actually having a relapse??

Does anyone else have this problem?

I hope everyone is well and not suffering too badly with the change of seasons. I am going on holiday in four weeks so I am really looking forward to that. And how important is it to have things to look forward to?

We are going on a Canal boat holiday again, as we did last year. It's a different time of the year this time though and we are going on a different canal. This year we are going up to Chester and on to Ellesmere Port - starting from Audlem.

I had a decision to make as to whether to take my wheelchair with me. I have decided to take it, because I don't want to have any reason as to why I can't do anything!! We are going to explore Chester city, go to Chester Zoo, go to the Blue Planet aquarium and go to the Boat museum at Ellesmere Port - I am really excited!! The distance of the canal and the number of locks are fewer than we covered on the Llangollen canal last year, so we know it will be a nice relaxed time!

Can you tell that I am REALLY looking forward to it!!

I will write another post very soon, because I am going through an application process to have our bathroom converted into a wet room. It has being ongoing for a few months already but the application has been sent off now. I have someone coming tomorrow to do a statement of needs/costs, so that the grant can be looked at and then they will look at our finances.

I will write a separate post about all this as it is quite a complicated process!!

Sending best wishes to all MSer's out there, I hope you are all keeping well!

XxXxX

PS, I must just wish my Dad a very Happy 70th Birthday for tomorrow - I love you Daddy! XxXxX

What a week!

2010-08-16T02:37:00.007+01:00

Wow, what a week I had last week.
Most of you know that my great passion - apart from Martin & Me To You bears - is singing and that Martin & I are part of a group called How Apt.
You can check us out at
http://www.how-apt.com/
We had a couple of events last week. We performed at a street festival, in Silverton, north of Exeter, last Saturday, and then we are performing at the theatre in Brixham for three Wednesday's throughout August. The first one was last Wednesday and then we have one this Wednesday 18th and next Wednesday 25th is our last one.

And so the week began!
We had a big rehearsal last Monday, to make sure we were ready for Wednesday's performance. It was needed and we all felt a bit better after doing that rehearsal, but I have to admit, I was totally shattered by the end of it.
I am my own worst enemy too, as I try to continue just as everyone else does. It's not that I ignore the MS....it's a bit hard to do that, but I do ignore the signs of when I have done too much etc. So I was really struggling on Monday evening.

It didn't stop on Tuesday.
I had to be up early and I was down at Derriford hospital in Plymouth by 8.45am. I had my Tysabri infusion. It was number 15 this month! I was exhausted before the infusion started, but as usual, the infusion wiped me out again.
We were lucky this time. Because we got there at 8.45am, the infusion was up and running by 9.30am. As I said, the infusion wiped me out. It hits me very quickly once it is administered. I was asleep on the ward just after the infusion had gone through. I have to wait an hour after the infusion, to make sure that everything is OK, but I am finding that I am starting to sleep through that hour!
I am trying to be sensible though and use my wheelchair. I am finding it easier to use & because I get so wiped out, it is better for me and for Martin.
I know that using the chair is a good thing. It has just taken me a while to get my head around it. I am still finding situations where I can't do it, but it is getting easier over time! Especially as I have a queue of friends who want to push me in it!
I find that it's not just the fatigue that is the reason I use the chair. Because I use crutches and I suffer with a lot of pain and using the crutches causes pain in my hands, on a regular basis, using the chair means that I can alleviate some of the cause of the pain.
I have no idea whether the Tysabri is working, but I have had an MRI scan and I have an appointment with my consultant in September.
I know that some people really notice when they are ready for their next infusion, but I haven't noticed that. That's not to say that it isn't working for me, but I will be interested to get the MRI results and see if there are any changes.
By the time we got home on Tuesday, I was not in a fit state to do much. I was asleep for a lot of the afternoon and I was in bed early that night.

Wednesday was our first gig at the Theatre, so I tried to have a relaxing day, without too much exertion.
We had to be at the theatre for 4pm, for a run through and sound check. It was decided that I could sit throughout the whole show, if I needed too. I'm not sure whether it was pure pigheadedness, whether I was sub consciously being stubborn or whether it was adrenalin, but I stood for all my songs throughout the evening.
I know that with the correct posture, I am able to sing perfectly well sat down. I spoke to my GP about it as well and I know that this is the case, so this week's gig, I am going to sit down for at least some of the songs, if not all of it! The guys that I am singing with, don't have a problem with it. In fact, I know some of them would be pleased that I was looking after myself....yes Joe, I do listen to you!!
It is just really hard. I guess I keep feeling that I have something to prove.
Which is really silly.
I have nothing to prove to anyone, let alone myself. I know what I am capable of. But it is hard to change my mind set, having performed since I was about five years old. I want people to see my performance and not my MS.
Anyway, the show went really well, we just want lots of people to come and see us! If you are around or near Brixham on Wednesday 18th or 25th August, then come and see us! See the website or the poster below!

Thursday morning, I had a GP's appointment. I had been to see the pain clinic the previous week and I made the appointment, because I knew there was a possibility of changes to my medication. As it happened, there were changes, so it was useful to have the appointment.
I also had problems with my hearing again. I was struggling to hear out of my left ear. Apparently it is an inner ear problem, which is a build up of dust or pollen. It is something I am just going to have to live with!
I am also struggling emotionally with my MS. There is a lot happening at the moment. I am having things changed at home, adaptations etc, I have started using a wheelchair, I am going through an application for a wet room, and this is all starting to affect me.
I don't want to let it get to me and I don't want to feel sorry for myself, but sometimes, that is easier said than done!!

Anyway, I hope everyone is keeping well, or as well as can be!
Love & hugs
XxXxX

Peristeen - A hard story to tell!

2010-08-03T21:44:00.005+01:00

I have always said that I will be open and honest on this blog.

So I have decided that I will tell you about the experiences that I have been having over the past few months, to do with my bladder and bowels.

It is not an easy subject for us, as a nation, to talk about, but I think if we were more open about it, it wouldn't then be such a difficult or embarrassing issue for any of us.

I found myself wanting to find information and talk to people, but not really knowing where to go, so that is another reason why I want to talk about this.

I have had issues with my bladder and bowels for a little while now, but it has been getting worse over the last few months. I was referred to the Bladder and Bowel care team at the local hospital, where I had an appointment with a lovely nurse. She put me at ease and made me realise that this is actually quite a common problem. It doesn't make it any easier though!

After talking through my issues, she decided that it would be better to concentrate on my constipation and try and get that sorted, because that may be having an impact on some of the bladder problems.

The first thing that was identified was that I don't drink enough. Keeping yourself hydrated is really important when needing to keep your bowels regular. So I have increased my liquid intake.

It is actually quite difficult, when you don't drink very much, to force yourself to drink more. But I have started drinking more water and I am actually enjoying water now. In the hot weather we have been having, it has been a God send!

We then talked about my diet and as I explained, at the start of the year, Martin and I decided that we wanted to lose weight, so our diet is actually quite healthy.

By the way..............I have lost over two stone so far!!

The nurse decided that the first path to go down was the Movicol path. I was really very constipated and would be lucky if I was going once or twice a week.

Movicol is a sugar and salt mix and the idea behind it, is to soften the stool, which makes it easier to pass. She wanted me to take one sachet, twice a day for the first three days and then go to one sachet a day.

I did this for the first week and it started to work, but then it turned into disaster. It went too far the other way and caused bowel incontinence............I told you this was hard to talk about!

Apart from the obvious, it was a really difficult situation, because it completely knocked my confidence. I couldn't go out anywhere, because I was afraid of what might happen. Obviously I stopped taking the Movicol. I couldn't face taking it and the consequences of that. Also it is not a pleasant tasting drink, even though I had chocolate flavour!!

I went back to see the nurse and explained what had happened. She said that Movicol isn't for everyone, so we decided that I would try increasing my liquid intake even more, eating breakfast and routinely trying to go to the toilet, whether I needed to or not. She showed me the best way to sit on the toilet, to encourage your bowels to open.

For the first couple of weeks this seemed to be going OK, but then for the next couple of weeks, I ended up being severely constipated again. It had been almost two weeks without going at all.

I was in quite a state and so I had to phone the nurse and ask for some help. At this point, because of the severity of the constipation, the suggestion was to take eight sachets of Movicol in one go. This was what was needed to force me to go. Of course, this filled me with dread. I managed to take six sachets. It was all I could face.

The problem, I find, with Movicol, is that there is no time scale as to when or if it is going to work. You take the sachets and then you just have to wait. I took my six sachets and ended up staying in my house for the next 24 hours as I had no idea what would happen.

I did manage to have some bowel movement, but it wasn't the clear out that I had expected. Over the following few days, I did manage to go a couple of times. I had been told by the nurse that if I still wasn't going regularly, then I should take a single sachet every couple of days. This scared me a little because I still didn't trust what it would do to me. As it was, I didn't do this, because I felt that it might go too far the other way again and I just couldn't face that.

The nurse made an emergency appointment for me and I went into the hospital to see her.

I went through every thing that had happened and I asked her whether Movicol was my only option, because it was clear to me that Movicol would not be a satisfactory solution. It was a big ogre in the corner of my kitchen and I couldn't bear the idea of taking it and the consequences that I would have to face.

The nurse then suggested a procedure that may be possible for me to try - if I was open to the idea. I was at the stage where I was open to any suggestions, if it was going to help my situation.

The system that she suggested is called Peristeen. It is what is known as an anal irrigation system. This did scare me quite a lot, but if it was going to work, if it was going to give me back some control and if it was going to make my life a little more comfortable, then I was willing to give it a try.

There is a separate nurse who deals with this system and it was arranged for her to come out to our house & chat to us. An information booklet and DVD was sent out to me, so that I could learn about it before she came out to us.

When she came, she bought one of the systems with her, so that I could look at it and see how it all worked.

It is done on prescription, so the nurse needed to get the prescription sorted out before I could start it. So it was arranged that it would all be sorted out for me to start the following week. The equipment was ordered and I received it. The nurse came out and I started using the Peristeen system.

It is quite scary to start with, because it is not a natural thing to do, but the more I have used it, the more it is becoming just a part of my daily routine.

It means that I am in control, I decide when I use it, so that I am going regularly and I don't need to worry about it. It is all done within about 30 minutes, so no more sitting on the toilet for up to two/three hours at a time. It has helped with the continual bloated feeling that I would get. I still get bloated etc, but it is nothing compared to what it used to be.

I am only about three weeks into using the system, but it really has made a difference to me. It is not pleasant to do and I need Martin's help, which is frustrating, but compared to how I was feeling when I wouldn't be able to go for days on end, this is worth it.

The following link, takes you to the Coloplast website and they are the company who supply this system.

http://www.coloplast.com/products/urologyandcontinencecare/peristeen/userguides/pages/userguides.aspx

I know this hasn't been an easy read, it hasn't been easy to write it.

I debated with myself as to whether I should actually list it or not. But I decided that I should, because I want to be able to help other people out there who may be going through the same as me............I just hope I can!

XxXxX

More Closer Than Ever Photos!

2010-08-02T11:13:00.005+01:00

Some more Closer Than Ever rehearsal photos!

£3780 RAISED! YAY!!

2010-07-24T10:57:00.005+01:00

So apologies once again for my lack of posts.
You may be aware that we have been doing our fundraising concert - Closer Than Ever and although we did it June 25Th & 26Th, I have been recovering ever since!
It has taken a while to get all the figures sorted out but now that we have, I am so proud to be able to say that we have raised £3780 for the Multiple Sclerosis Society, South Devon Branch and Rowcroft Hospice.
£3780! Wow! I am so grateful to all those involved and to everyone who supported us. We had such an amazing time. It was so well received. The audiences loved it and we had so much fun performing it!
I'm so proud!
I'm proud of what we have achieved for two worthwhile causes. But not only that, I am so proud of what I managed to do. I organised all the front of house "stuff" and I performed in two shows. I was totally exhausted! It took me about two weeks to recover...............or actually am I still recovering??!! But I had done it! And I had enjoyed it! The build up to it had been quite scary. I had begun to doubt whether I would get through the performances, but I had so much support from Martin and all the rest of the cast. It's always scary just before the shows start, we constantly ask ourselves why we do it?! But then the enjoyment of the actual performances, the reaction and encouragement from the audiences and now the fact that I can say that we have raised £3780, made all the stress and the panicking worthwhile!

On top of doing Closer Than Ever, our kitchen floor decided to start sinking! We discovered that one of the pipes up to the hot tap has been leaking and it looks like it has been doing it for a long time, because the floor is about 80% saturated! We are getting it sorted through the insurance company, but it is taking forever! And in the meantime, we have two big wholes in our floor. If it wasn't for the lino, we would have fallen through by now!!

It has been quite a difficult few weeks. Not only did we have Closer Than Ever to concentrate on and the kitchen disaster, but I have been dealing with a few issues with my Multiple Sclerosis too.

I will explain them over the next few posts. Some of the things are not easy to talk about, but I want to, because I want to help anyone else who may be going through the same things as me. I am not looking for any sympathy and I am not doing it so that I can get people to see what I am going through. I hope anyone who reads this knows that. I know how I felt when certain things were suggested to me and I really didn't know where to turn. I hope that by "putting it out there" I can help even just one person.

I had an MRI scan last week, so that my consultant can look at the results and we can discuss where we are with my treatment. I have a follow up appointment booked on September 6Th, so I'll keep you posted!
I am still having my Tysabri infusions. I have had 14 infusions so far. It is a strange feeling, because I am not convinced that I feel any different. I want to be positive about it, I want to feel as though I am going through this for some real benefit. But I don't. I know that some people feel when they are due for their next infusion. As the infusion comes round, they start to deteriorate and know that they are ready for the next one, but I have never had that experience. Does that mean it isn't working, I don't know? How do I know whether it is working, I don't know? Will I ever know whether it is working, I don't know?
I am still having my battles with pain. I am currently on Oxcarbazepine, Targinact, OxyNorm & Ibuprofen for the pain. I am also taking Baclofen for spasms and a couple of other meds for other things! I have an appointment with the pain clinic this week, which I am glad about. I am struggling so much with my hands, especially my right one and of course, I would be right handed!

And the heat hasn't been helping. I appear to struggle in both extremes, when it is very cold or when it is very hot. At the moment, my hands feel as though someone has slashed them with some razors - not that I know what that feels like, but it's what I imagine it would be like!

It makes doing anything really difficult, but of course, I don't stop doing it, otherwise my life would stop. It's like a no win situation.

Anyway, that's enough for now, as my hands are starting to hurt.....a lot! I will be back very soon with more updates though. I will be talking about our new bathroom, my new wheelchair, Peristeen and various appointments..........so watch this blog!

Love & hugs to you all, I hope life is treating you well!

XxXxX

Closer Than Ever Rehearsal Photos!

2010-06-17T23:01:00.007+01:00

Hi everyone!
I apologise for my lack of posts recently. I have been having quite a difficult time, as well as being very busy with rehearsals for our fundraising concert, which goes on next Friday & Saturday 25th & 26th June. If you want to know the details, I will add the poster to this page after I have added some rehearsal photos from our rehearsal tonight!

XxXxX

Closer Than Ever - videos from 2004 production!

2010-06-05T15:54:00.003+01:00

Here are some video's from a rehearsal we did, for the first fundraising concert of Closer Than Ever, we did back in 2004. It was a great success, we raised £1000 that time.
The first video has Joe McNulty singing One Of The Good Guys and the second video is Joe McNulty, Martin Southard and me! We are singing She Loves Me Not.
Enjoy!!

XxXxX

Barnaby & Kit Kat, they know just when I need them!

2010-05-31T22:03:00.007+01:00

I know I have talked in the past about how much comfort my two cats bring me. They have a sixth sense and just know when I need them. Barnaby has been sleeping at the foot of our bed for the last few weeks, in between my feet & he would come up to my head and give me cuddles during the night! I think it has started getting warmer, so he is not staying up there as much now, but Kit Kat has now taken to sleeping on my back. And it really is a comfort to me!
Here are some pictures of them being very cute. The ones with Martin, are Kit Kat having cuddles with her "daddy"! She is a real Daddy's girl! There is also a great one of Barnaby doing his yoga position!!

Our gorgeous babies!
XxXxX

Photos - Wheelchair & Closer Than Ever!

2010-05-30T21:45:00.011+01:00

I thought I would put up some photo's. I have started customising my wheelchair, but also there are some photo's of our Closer Than Ever rehearsals and the poster that we are using to advertise it - enjoy!

The Tatty Teddy is attached!

Closer Than Ever Rehearsal photos

Closer Than Ever Poster

Coping............or not!

2010-05-30T14:16:00.004+01:00

Happy Bank Holiday Weekend!

I have been taking the Diazepam & the Baclofen for two days now and I am happy to say that they really seem to be helping with the spasms. It has knocked me out a bit, but I was expecting that and actually it's not a bad thing. It is forcing me to rest!

I am still having major issues with pain, which is really annoying. But I am able to cope with it a little better now, because I've had some rest. It's amazing how much fatigue can impact on everything. It's not just the physical issue of having to rest and not being able to do much, but it is how it affects you emotionally. It can make things seem so much worse, which of course, just brings you down even more.

I had this problem on Friday. I was so fatigued and in so much pain, but because I was fatigued, I just couldn't handle the pain. I just wanted to sleep so that I didn't have to think about the pain or how I was going to deal with it.

I am glad that I persisted with the Doctors and asked for help. It's not easy to admit that things are hard or to admit that you aren't coping, but when you have done it, it is usually the best thing for you!

I am currently seeing a Psychologist at the moment and I have to admit that it is helping me. It is very useful to be able to talk through "stuff" with someone who has no connection to me. I have to go to them for the appointments and to begin with I was a little apprehensive about it. I didn't like the idea that I was actually "going" to see someone. It didn't feel right to me. But now I realise that "going" to see someone, means that I can leave it behind when I have finished.

I think that this is working for me. I'll let you know in time!

Another thing that happened on Friday, that just added to everything else, was that my new wheelchair was being delivered.

I was chuffed that I was getting a new chair, because the reason behind it, is that I have lost weight, so my original chair was too big now! That feels pretty good, but the whole idea of having a wheelchair, is still a major issue for me.

So when I was feeling really low on Friday, I really didn't think I could handle dealing with anything to do with a wheelchair.

But, I have to say, that I was pleasantly surprised. I was lucky to have a good friend with me, when the chair was delivered and that made it a lot easier to handle. We were able to make light of it and so the situation wasn't as stressful as I had imagined it would be.

The chair itself, is so much better than the last one. It is brand new and it has quite a sporty feel to it!! It comes apart more than the last one, so that it will be easier for Martin to deal with. The wheels come off, along with the foot plates and the arm rests. It is a lot more comfortable than the other one and I'm not squeezing myself in to it, it is still quite roomy.

The really positive thing, is that I can see myself using this chair. I have said to Martin, that I want to go out in it over this weekend, and that is a huge thing for me! I am quite proud of myself for the progressive I have made in my head - now I just need to use it and stop making an issue out of it!

I have decided that one way for me to deal with this, is that I am going to have to customise it!

I am a massive Me To You fan (the grey bear with the blue nose!), so I am going to cover it with stickers and I may have to attach the odd tatty teddy or blue nose friend!!

I will take photos, once I have done it!

Anyway, the Diazepam is kicking in again and I am struggling to keep my eyes open. So while Martin is playing a mad shoot 'em up game on the PlayStation 3, with Matthew, I'm going to go and have a lie down, upstairs!!

Wishing you all a great Bank Holiday weekend, I hope the weather holds for you all!

Love & hugs

XxXxX

The story of Mike Batt & my cuddle with Rolf Harris!

2010-05-29T12:13:00.003+01:00

One of Martin's favourite composers is Mike Batt. He wrote The Hunting of the Snark, which is one of Martin's favourite musicals. He also wrote the wombles theme, which makes him a God in my eyes!!
We found out that he was doing a one off concert in London and the temptation to go proved too strong! We looked into the price of tickets and I contacted Cadogan Hall, the venue, and asked whether there were any discounts for the disabled. Amazingly, there were. We only had to pay for one ticket, as a carer goes in free. It was like everything was pointing to us going.
So we bought our tickets and then sorted out accommodation and transport to get to London. We decided to go via National Express coach. Our return journey cost us £1 each! And we stayed in a Travelodge, which was cheap, but it's standard accommodation, so you always know what you are going to get.
About a week before the concert, I decided that I wanted to try and do something special for Martin. He is so special to me and makes my life so much more bearable, that I wanted to do something that would show him how special he is.
I knew that Mike Batt was on Twitter, so I decided that I would send him a message. I explained our situation, that I have MS and that Martin gave up work last year, to become my full time carer and I explained that I wanted to do something special for him. I told him that Martin is a big fan and that we were coming up to London from Devon, to see his concert. I asked him whether there was any chance that we could meet him. I had nothing to lose, he could either reply, say no or just ignore me, but it was worth a try, what ever the outcome.
Imagine my surprise, when he replied! He said that they had to get out of the venue straight away after the concert, so we wouldn't be able to see him after the concert, but he said that they were having a rehearsal in the afternoon and if we could get there, we could sit in a watch it! WOW! I was astounded! I didn't know what to do with myself! I really hadn't expected that! I didn't want to tell Martin, that was the whole point, but I had to tell someone, so I sent my friend a text - "screaming"!!
I rearranged the coach, so that we could get to London in time, asking Martin, if he trusted me!! I confirmed with Mike, that I had done that & he told me to go to stage door and ask for his assistant! I was so excited! I desperately wanted to tell Martin, but I knew it would be better if I could keep it a secret!
And I managed it!!
We caught the coach up on Monday morning, we checked into the Travelodge and then got in a taxi to take us to Cadogan Hall. I told Martin to get in the taxi, while I told the taxi driver where we wanted to go. Once I had got into the taxi, I asked Martin if he had heard where we were going? He said he hadn't, but I decided that now was the time to reveal what I had done! I was convinced that he had already worked it out, although I don't know how he would have!
So I told him, that we were on our way to watch Mike Batt's rehearsal. He was amazed! He genuinely had NO idea that's what I had planned and he was really chuffed!
It was an amazing day. Cadogan Hall is a wonderful venue. The seats are really comfortable and it is a really great place. Mike Batt had a grand piano in the centre of the stage and he was surrounded by a full 50 piece orchestra and a rhythm section too. He also had two singers, one of whom was an artist that he had 'discovered' called Florence Rawlings.
He didn't rehearse the whole programme, just the items with the orchestra or the rhythm section. But it was a really great privilege to be allowed to be in on that.
The rehearsal finished at about 5.50pm and I wanted to go and thank him for allowing us to be there. He had already said that he would see us briefly before he had to get ready. So we walked down to the stage, the orchestra had left. He turned around and saw us and realised who we were. He came straight over and spoke to us for a few minutes. We thanked him for allowing us to be there, he was so lovely though and said it was no problem to him! It really did make our day though.
The evening performance was wonderful, one of those evenings that we will remember for a long time and a real honour to have been there for it! The surprises hadn't quite finished though!
I was getting the lift back down to the foyer, when I realised who was also waiting for the lift.......none other than Rolf Harris! What a gentleman. He was there with a lady, who he ushered into the lift and then he made sure that I got in OK. It was only a short ride down, but he treated us to some impromptu beat boxing! He stood and held the lift open and ushered me out. He held my hand and asked me if he could have a cuddle!! Imagine my surprise - he asked ME!! I said 'of course' & he said 'but don't tell everyone'!! It was the perfect end to a wonderful day!!
We got back to the Travelodge about 11.30pm and both of us just crashed. It had been a long, but really wonderful day. My surprise had worked and if he didn't know it before, Martin certainly knows now, just how special he is and how much he means to me.

We returned home on Tuesday and by Thursday I was exhausted. It really started to hit me just how fatigued I was. I then became full of frustration. Why is it that we can go and have a brilliant couple of days, but I have to pay for that afterwards? I really suffered very badly in the next 36hours.
I am in the process of changing my pain medication, again. I am continuing with the Targinact, but we are adding in a new drug called Oxcarbazepine. I really struggled yesterday though. I had gone to bed at 4pm on Thursday evening and although I woke up a couple of times and had a drink etc, I didn't get up properly until the following morning. It was quite a restless night though, because I was really struggling with spasms in my legs. I was so restless and couldn't keep my legs still. It was so frustrating and really driving me crazy.
I was so tired and in lots of pain. I didn't make for a happy Amelia!
To top it all, I then had a phone call yesterday morning, to say that my new wheelchair was being delivered. I SO didn't need that at that moment!!
Actually, the chair was delivered, while a friend was with me and that made it all the more bearable. I had shed my tears before it had arrived and then when it turned up, we were able to make light of it. The chair itself, is much better. It is obviously smaller - yay to me for losing weight!! But it is more sporty. It looks more 'cool'! This all sounds very silly, but I am having such a struggle in my own head, with the idea of using a chair, that anything I can do to make it easier for me, is a bonus. I can actually say now, that I can see myself using it. Which is a huge thing for me to say. But saying it and doing it are two entirely different things - I'll keep you posted!!
Anyway, after waiting for quite sometime, I eventually spoke to a GP yesterday, about the problems I was having. I couldn't explain the pain. It was horrendous. I'd say it was easily 11 out of 10. And the muscle spasms, were really freaking me out. I hadn't had it like that before. My legs were just uncontrollable. I just wanted to sleep, so that I wouldn't have to think about it or deal with it, but I couldn't even do that.
Anyway, the Doctor was lovely. She told me that I could continue taking the Targinact as well as the Oxcarbazepine, but she also suggested that I have some Diazepam, to help relax my legs and ease the spasms. I felt better once I had spoken to her, because at least I felt like we had something that we could do.
Unfortunately, when I went to pick up the prescription, it wasn't there! And by this time the surgery was shut........and it is a Bank Holiday weekend.........aaaagggggghhhhhhh!!
I rang the Out of Hours Doctor, who rang me back and I explained what had happened. He was great. He said he would do the Diazepam, but that he also would do a script for Baclofen and that he wants me to take it regularly. It is so great when you come across people who really know what they are doing. He faxed the prescriptions straight over to the chemist, Martin collected them and I went to sleep!!
I still woke up a couple of times, but thankfully the spasms had eased. I am continuing with the Baclofen and will see how that goes, but I have high hopes that it will really help the spasms and I also have the Diazepam as a back up too.

I am worn out now, so I won't do an update for Closer Than Ever just yet, but I will do one in the next day or two..........there may also be an audio file that you can hear too!!!

Wishing everyone a wonderful Bank Holiday Weekend!
Love & hugs
XxXxX

Birthdays!

2010-05-13T17:34:00.007+01:00

Hi everyone!
Well, what a week! I appear to be having lots of appointments at the moment. That isn't a bad thing, but it is keeping me busy!!
I had an appointment with the pain clinic, yesterday. It was quite productive. I am to stay on the Targinact that I am currently on, but I can increase it from 25mg twice a day to 30mg and then up to 40mg twice a day. But he doesn't want me to go any higher than that. I am to try that for a week and then if there is no significant improvement, I am to go to my GP and ask about another drug that he is suggesting. I can't remember the name of it at this point!
I have an appointment to see my GP anyway, next week, so I can discuss it with her then.
I also have another appointment with my Occupational therapist, next week. She wants to explore doing some relaxation with me, which I think is a really good idea. I am struggling so badly, with pain and it waking me up at night, so I am not getting any decent night's sleep. I think if I can learn some relaxation techniques, then maybe I will be able to help myself get back to sleep, when & if the pain wakes me up. It's worth a try!!

It's now Saturday 15th May - My brother's birthday! Happy Birthday big brother - Love you!!
May is full of birthdays! Martin's was on the 6th, as well as my friend Claire's Dad - Happy birthday Ian! Then there is my brother's today and mine on Monday! My birthday is a special day though, as I know of four other people who were born on May 17th! Happy birthday to Jeane, Julia, Mike and Jill!!

I had my Tysabri infusion yesterday. It actually all went very smoothly. Having lost weight, my portacath is much more accessible. It is easier for the nurses to get the needle in, so much so, that they are going to use a smaller needle next time and so I am hoping that it won't hurt so much!!
We were finished by 1pm, which was good. I fell asleep on the way home......surprise, surprise!! I got home, had some lunch and then promptly fell asleep! I woke up about 6.30pm, had some dinner and then was in bed by 9pm! And I slept! Which made a pleasant change!!

It's now Wednesday 19th May!
I have had a busy few days. My birthday was lovely! I was a very spoilt girl. Martin treated me to lots of gifts and I felt very special! My friends made it really enjoyable too, we went out for dinner and ended up taking part in a pub quiz, which we went on to win!! We had a really good laugh and it was just what we needed!
I have had a couple of appointments again this week. I had one with my occupational therapist today and she went through a relaxation technique with me. It was amazing. I took to it really well, I found doing the breathing, quite easy. I guess my singing background is coming in handy!! I know it is something that I will need to practice. In fact there are a couple of other techniques
that they want me to try. But I do feel that if I practice, then I will be able to use this as a really useful tool in helping with my pain and sleep. It's a good feeling!!

Closer Than Ever rehearsals are going well. We have another one tomorrow night and we are hoping to have all of us at that one!! The thing I am panicking about at the moment, is that we won't sell any tickets!! I know we will and I know that people usually leave it until nearer the time, but I want to know now, that we will sell them all!! I want to be able to sell as many as possible, because we have two charities to share it between and I want to raise more than the last time we did it!! I know I set myself challenges, but only ones that I feel are achieveable!!

Anyway, I think the relaxation really did work today, as I feel exhausted now, so night night everyone. I hope you are all doing well. There is supposed to be good weather on it's way so I hope that is good news!
Hugs
XxXxX

Happy Birthday Martin!

2010-05-06T15:56:00.007+01:00

I have to say a big HAPPY BIRTHDAY, to my adorable, wonderful husband, my best friend..............Martin I love you! We went our for drinks with our lovely friends, last night, it was a really good evening and I laughed like I haven't laughed for a long time, so thanks guys!

I have a couple of weeks of appointments coming up. I went and spoke to a psychologist yesterday, and despite my reservations, I actually found it quite helpful. I have spoken to someone in the past, but they have always come to my house. Yesterday I went to a medical centre to see someone and I felt a bit weird about that. But it turned out to be a better situation, because I could leave it all behind once the session was over. I have another appointment next week, so I'll let you know if it continues to be a help! I have another appointment at the pain clinic next week too. I am looking forward to being able to discuss my pain and where we go from here. I am still suffering. Since the weather has changed, I thought things might improve, but I am still struggling, just in different ways. I am currently on Oxycontin, which I think is helping..............just not enough! I am seeing someone at the Bladder and Bowel care unit. It's not something that I am happy talking about, but it is a part of MS and these barriers need to be broken down. We are dealing with my bowels first and then we will move onto the bladder - I am currently taking chocolate flavoured Movicol, oh how I love the stuff!! But I promised the nurse that I would persevere!! I am also going to be seeing my occupational therapist in a couple of weeks. She is fantastic and I feel I have someone who is really on my side. She is going to come and do some relaxation with me, to see if that will help me with the pain. She wants me to try and desensitize my pain too. I am a little apprehensive, but I will give anything a try!! And of course we have Closer Than Ever! Rehearsals are starting to pick up. We have one tonight and there will be a special birthday cake for my birthday boy!! I feel that things are starting to move forward with the concert. We are getting lots of posters and flyer's out there for advertising. I am going to contact the local papers and the radio too, so I'll keep you posted of any interviews!!

Anyway, I wish everyone a lovely weekend, we will be rehearsing for the concert and also a wedding that we are singing at, in a couple of weeks time! Singing, one of my favourite past times!! Love & hugs XxXxX

Rough time

2010-05-01T18:59:00.004+01:00

Hi everyone,
I am so sorry that I haven't been on here for such a long time, I have been having a bit of a difficult time and I haven't felt physically or emotionally strong enough to write any posts.
I have been incredibly frustrated, but I am determined to continue writing again and getting the support and friendship that I have missed over the past weeks.

There hasn't been one single thing that has happened, but a combination of lots of things, that has caused me to find life a bit more difficult than usual!
I had my Tysabri number 10 which I found quite difficult because I had a headache that lasted for about 10 days. We don't think it was anything to do with the Tysabri and when I look back on it now, I think it was the start of a virus/cold/sinusitis that I came down with just before Easter. I was suffering with it for a couple of weeks and it really knocked me for six. It started as a cold which then went on to become sinusitis. I have never suffered with that before and it really wasn't pleasant!
I had to put off Tysabri number 11, because I really wasn't well enough to make the trip to Plymouth for the treatment. It was postponed for a week, but I still wasn't well enough, so I didn't go down until the following Friday, about 10 days late. I now have to change my day and go every four weeks from that Friday.
Interestingly though, I didn't really feel anything, even though I was late having my infusion. I didn't feel like I was desperate to have the infusion. Which makes me wonder whether the Tysabri is actually doing anything? I will still continue with it and give it more time, but it has put questions in my mind.
I have been struggling with pain quite badly again. I have changed my pain medication. I am no longer on Tramadol, but I am now taking Oxycontin. The change over was quite difficult. I had been taking Tramadol for quite some time and so it took a little while for my body to get used to not having it any more. The Oxycontin was a straight swap, but I had to start off on a low dose, so I have been struggling a lot to get it right. The Oxycontin is a 12 hour slow release tablet, but I am also able to take a lower dose tablet called Oxy Norm, in between the 12 hr release tablet, for break through pain, if I need it...........I have needed it!!
I have another appointment to see the pain clinic in mid May, so it will be good to go to that and see where I am with the pain management. I am having issues with waking up in the early hours of the morning, with severe pain in my hands. It is not a pleasant experience and is having a real impact on my fatigue too, because it is seriously disrupting my sleep patterns.
I am also now seeing a nurse at the Bladder & Bowel care, who was lovely and really made me feel at ease. She has decided to deal with the bowel issue before making a start on the bladder problem. It is another area where I feel there is finally a plan in place, to try and make the situation a little easier for me.

Our lifestyle change, where we have been making an effort to lose weight, is going really well. As of last Monday, I have lost 32 & 1/4lbs (2 stone, 4 & 1/4lbs) since January 4Th! I still have a long way to go, but it is a good feeling for what we have done so far. Martin has lost a stone and a half too. Together our house is over 50 lbs lighter since Christmas!! It has made a big difference to my portacath. It is a lot easier for the nurse to find now and the past two times that I have been for my infusion, she has been able to get the needle in first time. The portacath is much more prominent now and I wonder if I might have to have it moved - I don't even know if they will do that? I am certainly not going to stop losing weight, just because of the portacath though!!
I am now able to wear clothes that I have bought in the past & not ever been able to wear! I have still got a lot to lose, but we are doing it properly, we are eating healthily and it is coming off slowly, so we have a fighting chance at keeping it off!

We have eight weeks to go before we put on our fundraising concert - "Closer Than Ever".
We have started rehearsing now and it is going well! We are all enjoying what we are doing although there is a lot of hard work being done! We have had the poster/flyer designed and printed and I am busy sending out lots of letters to businesses to try and get some advertising to pay for the programme and raffle prizes for the night. There is a lot to be done to put on a show like this, it always seems like such a good idea when you are planning it with 18 months to go, but now there is only eight weeks, it is getting a little scary!!
It is giving me something to focus on though, which is essential for me. I like to have something to get my teeth into and it gives me a purpose, which is always a good thing.
I love this show, so much. It has amazing music, which feels really great to sing. I am really excited about doing it, but I am also terrified too. I am starting to question my confidence and whether I will be able to pull this off. That is where I am so grateful to our friends for being involved with us, they all help me and we work so well together - it is a real group effort!
If any of you have the opportunity to come and see this, then please do - it really is worth it!

Anyway, that is enough from me for now, but I promise, I won't leave it for so long for my next post!
I hope everyone is keeping well and looking forward to the brighter, warmer weather!

XxXxX

Tysabri number 10 & feeling pretty rough :(

2010-03-10T21:46:00.008Z

So I have let things slip again! It's been a hectic few weeks, but I'm here again and there are several things to get you up to date with!

Firstly, I have had my tenth infusion of Tysabri. The actual administering of the infusion went quite well this time. The nurse was able to get the needle into my portacath first time. We think that it may have something to do with the fact that I have lost some weight. The portacath is more prominent now and therefore maybe easier to access. Hopefully it will become even easier, the more weight that I lose - it is having more benefits than I first realised.
I have actually lost nearly two stone. I am so pleased. It has been just over ten weeks and I have lost 24lbs. I feel like this is falling into place. We are actively trying to lose weight, but neither of us feel like we are on a diet. It is just a change of life style. We are eating healthily and it feels good. Between us we have lost 40lbs - our sofa is breathing a sigh of relief!!
So back to the infusion, I had my usual reaction, where it knocked me out. I found it hard to keep my eyes open. I also started developing a headache, but I know that Tysabri can cause a headache after the infusion.
Martin drove me home, which was good, because I fell asleep, as usual, on the way home. The problem I had, was that it seemed to affect me for a while after the infusion. I had a permanent headache for over a week and I felt really knocked out. I couldn't stop sleeping! I was so tired.
I rang the MS nurse & I also went to see a GP. The problem with seeing a GP is that they don't have intimate knowledge of the therapies that we are taking. That makes it difficult for them to be able to give any advice or help.
It has been twelve days since my infusion and although the headache isn't permanently there now, it is still coming and going. I have never been one to suffer with headaches, so it is a bit frustrating. There doesn't seem to be any explanation, other than it's due to the infusion and that just makes it more frustrating!!
I am so tired too. I know I have the fatigue, but it seems to be more than that. I need to sleep so much. I only have to sit on the sofa for a little while and the next thing I know, I am asleep. The tiredness and the headaches together, have made things just a little difficult over the past couple of weeks.

Social services have been round to look at my bathroom situation. It actually upset me a little bit, because they wanted to look at other solutions rather than changing it into a wet room. I know that they have to look at all the possibilities, but my OT had already assessed what was needed in the bathroom and she had said that the best solution was to get rid of the bath because I can't get my legs over the bath without help. That was probably why I was feeling a little frustrated, because I thought we would be further along than we were! They did exchange my four slated bath board for a six slated one and that has proved to be a better thing. They also sorted out getting another grab rail put up.
I will be seeing my OT next week, so I can discuss it all with her, although I did phone her & let her know what had happened! She is on my side and fighting my corner, which is great to know and I am very lucky to have her.

My Dad came home in February - he is a Captain in the merchant navy and so he's away for 6/8 weeks at a time. It's great having him about because he has the time to help us get things sorted out in our house! It's his way of making sure that things are safe for me at home.
We are sorting out the kitchen this time he's home. We had a fridge/freezer, but we have sold that and got an under counter fridge & freezer. This will enable me to be able to sit and sort things out from them. It has opened up our kitchen and there is a lot more light now!
It's lovely, because having been in the house for over eight years, we are finally getting the house as we want it, putting our mark on it!
He has also put an extra piece of bannister at the bottom of our stairs. I hate having these things done, but my Dad goes ahead and does it anyway. It always turns out to be a really helpful thing, I just find it hard to accept that I need these aids in the first place!

Anyway, I hope everyone is doing well. Spring finally looks like it is making an appearance and the evenings are getting lighter.
XxXxX

Pain Clinic Appointment!

2010-02-20T22:52:00.007Z

Wow it's gone cold again! I'm actually sat here with a hot water bottle, my feet & hands are freezing!
On the whole, this week hasn't been too bad for me, although, I did struggle with fatigue towards the end of the week. I think things decided to catch up with me!

So Wednesday was finally my long awaited appointment at the pain clinic. I was a little apprehensive, not only to see what they had to say, but considering I have travelled to London on two occasions, to see a pain specialist up there, I just wondered what a clinic in Ashburton was going to be able to come up with!
Well the Doctor I saw, was lovely and put us at ease straight away. We talked through my history and my symptoms. We also went through the medications I am on and have tried. He then went on to explain the different groups of pain medication and for which type of pain they are usually used. I found that quite helpful. He asked me whether I felt that the Gabapentin (Neurontin) I am on, is doing any good. I said, that it is so hard to say. I don't know whether it is helping as I don't get an immediate relief when I take the meds. I have also been on it for quite some time & so that is also another factor. So we have decided that I am going to slowly reduce my Gabapentin intake, keeping a pain diary to be able to look at how it has affected me. If I think that it has made a difference, then I can increase my intake again and continue with it, but if not then I will continue to reduce it until I have stopped it completely. The Doctor said that this is the most effective way of finding out whether it's helping or not and whatever the outcome, it will mean that we have some useful information to work with.
He has also suggested another medication to start - I can't remember the name, but he will be sending me a copy of his letter! He wants me to try the Gabapentin experiment for about three weeks, after which I am to contact my GP to start this new drug. It is in the same group as the Tramadol that I am currently taking, but it is stronger.
He has said that we will go with these changes to start with and he will see me again in a couple of months, at which point we will review things again.
Martin & I came away from the appointment, feeling really quite positive. Not that there are any immediate cures or remedies, because we knew there wouldn't be, but it is really refreshing to have a Doctor talking to me about a plan & options that will be open and available to me. I have had the door closed on me for quite some time now and that is not putting my MS nurse or my consultant down, but they have come to the end of their knowledge for me. And by their own admission, they are as frustrated as I am because they don't know what else to suggest.
All in all we feel quite hopeful that this will be a positive move and one where I might start to get some relief from my pain!

Some more exciting news. I have had an appointment made from social services, they are coming round to the house on Monday, to do an assessment, to do with our bathroom. My occupational therapist put in a referral, for us to have our bath taken out and the bathroom made into a wet room/have a shower put in. It would make my life so much easier, because at the moment, I can't have a shower without Martin being there. Our shower is over our bath, so it means, for me to get in it, I have to lift my legs over the side and that is not easy for me to do on my own. I just hope that social services can see that I have an issue with it!

Martin & I have been enjoying watching the Winter Olympics over the past week and I have to just say that Amy Williams performance on the skeleton was fantastic! We are also enjoying the Curling competition and really hope that both the men's and women's GB teams can progress through the round robin! It's funny how we all become experts for two weeks!

I hope it's not too cold where you all are and if it is then keep wrapped up warm!
XxXxX

A Dream!

2010-02-15T20:18:00.005Z

A new car and we have been using it!!
I am glad to say, that we feel really pleased with our new car. It has a lot of space for a little car! We have put the wheelchair in the boot and it fits with no problem, we haven't lost any space from the back seats, which is good. And I am pleased to say that we are getting good MPG from it too. It is a pleasant change from the PT!!
We enjoyed a lovely day out in Poole, last weekend. We took a friend and went to see the Bournemouth Symphony Orchestra. They were playing a concert of John Williams film music. Superman, ET, Saving Private Ryan, Jaws and Star Wars, were just a few of the pieces that were on the program! It was a truly wonderful concert and a pleasure to watch such talented musicians.
I took the wheelchair with us, as I knew we would probably be walking about a bit. But, I was a little frustrated with myself when we got home, because I didn't use the chair.
I kept telling myself (and Martin), that I would be fine and could manage without the chair.
Of course I did manage, but I also suffered a bit too. I became very tired, my legs were really painful & weak. I didn't use it because I was sure I could manage, I let my pride get the better of me. If I had used it, I know I wouldn't have been so tired, I wouldn't have slept all the way home & therefore I could have helped Martin out and driven some of the way home!
I need to get over my fear of using the chair. It's not so much a fear, actually, it's just that I feel that I am being lazy if I use it. Because I can still walk, albeit with crutches, I believe that I should still walk, rather than use a chair. Even though I know that it would help me and that it would help conserve my energy etc!
Oh well, I know I am close to using it one day!!

Tysabri Number 9
I had my ninth infusion, last Tuesday. It took a couple of attempts to get the needle in my portacath, but I have realised that I am the only one that has a portacath, so the nurses don't have anyone to practice on in between me coming in each time for my infusion.
The infusion itself went through OK, but it knocked me off my feet a bit this time. I fell asleep on the way home and then crashed out when I got there. I was shattered for about two days after the infusion, this time. It was a bit frustrating!
I haven't noticed an improvement after I have the infusion or a deterioration when I am due for the infusion. I know that some people have noticed that they know when they are due for it, because they feel that things are worse. I haven't experienced this yet!
But I am still giving it time!

I have finally got my pain clinic appointment this Wednesday!
I am not sure what they will be able to do for me, but it will be good to talk to someone else about the pain and the fact that it is constant and driving me crazy.
Martin will be coming with me, which I always think is helpful. It is good for someone else to hear what is being said, because I don't always take it all in.
I am wondering whether they will want to take me off any of the stuff I am on already. My MS nurse has suggested that it may be that the combination that I'm on isn't working for me.
Well, I'll find out on Wednesday!

Our charity concert is coming along well. We have started the rehearsals, although only once a week or so for now. But it is fairly complicated music, so we want to give people a chance to be able to learn it without panicking!
It is quite strange because half of us have performed it before, when we did it back in 2004. But it is interesting that there are parts that haven't stayed in the memory. But there are other bits that we remember without having to look at the music!
It is so good to be getting our teeth into such a great range of songs again. And those that haven't done it before are enjoying learning it too.
The things to concentrate on over the coming few months, will be getting the posters and programmes sorted out and also sorting out the publicity etc. It's quite a big undertaking, but we have done it twice before, so I know we can do it again!
I really hope that we can sell lots of tickets and raise lots of money for the local MS branch.
I know it sounds silly but I have a bit of a dream. In Exeter, there is an MS centre, where people can go and get treatments, like massage and reflexology etc. They can also just meet and have a chat or a coffee. There are rooms with information, so that people can research anything to do with MS. There is also a Hyperbaric Oxygen chamber.
It is great, but it is in Exeter, which for me is about 25 minutes away, but for people in Torbay it is even further away.
I would love to be able to find the funds and a suitable building for our branch to be able to set something like that up locally.
I'm not talking on quite the same scale as that, so not the Oxygen chamber or even anywhere with lots of rooms. But somewhere, where there can be treatments given, that wouldn't cost a fortune for the members, somewhere, where the physio classes can take place and just a meeting place for people.
I have had a couple of massages in the past and I find that they are quite beneficial. But I go to someone locally and that costs about £25 a time. I can't afford to have them done very often, which I think is a shame, because it does help. So to have somewhere, where this could be affordable for people suffering with MS and also for their family and carers, I think would be really special.
I think about it and I think that it will never happen, but then other people achieve these things, so why shouldn't I be able to do it?

You never know.............one day!!
XxXxX

I've got it!!

2010-01-31T10:28:00.005Z

I've finally got my new car!
I was so pleased to pick it up, although I was a little sad to drive away from the PT, it has served us well for three years!
We took it straight to the petrol station, as there was barely any fuel in it. We put the petrol in & there was a warning light that came on and stayed on. We decided that we ought to take it back to the dealership, just to get it checked out.
We couldn't believe it when I stopped at a roundabout and was shunted up the backside! We looked around for somewhere to pull in, but then the car just drove past me, around the roundabout! I followed him flashing my lights. He then pulled in and we were able to get his details. He tried to say that I had stopped suddenly at the roundabout, but as I said to him, I had only just picked the car up, so there was no way that I would be stopping suddenly. And let's face it, it was a roundabout, of course I would be slowing down and stopping!!
It was just a little scratch on the rear bumper, but it felt so much bigger to us!! The gentleman said he would pay, so we will get some quotes and let him know!
We went back to the dealership to get the warning light looked at, which turned out to be something small, which they sorted out for us.
We left there and drove to Halfords, so that Martin could get an audio lead to play his ipod in the car! That's all he worries about with the car!
I also wanted to get some mats. I had thought about getting the Me To You mats, but they weren't great ones, so I went for some cheaper ones! That meant I could get some Me To You seat belt comforters!
When we got to Halfords though, we realised we had left the disabled badge in the PT. Oh this day was going so well!! I rang the dealership & they found it for us, but it meant we had to go back there again!!
We got home that afternoon, where I just crashed out on the sofa, exhausted from the days events!
The car is lovely though! A real pleasure to drive and it looks to have lots of room, although we haven't tried putting the wheelchair in it yet! I am so glad that I took the decision to continue driving, I know now it was the right decision. When we were going to collect the car, I really wanted to drive it away. I would have hated it if we had picked up the car and it was a manual transmission that I couldn't have driven! So I am not ready to give up mu independence yet!

I have been really struggling with pain again over the past few weeks. Earlier in the week, I had another night, where the pain disturbed my sleep, so I decided that I would try and speak to the MS nurse again. I find it quite difficult to speak to them, because I don't like making a nuisance of myself, but even if they couldn't help me, I thought they should know that the pain is continuing to be a problem.
As it was, neither nurse was available until next week and I was advised to call my GP instead. That turned out to be quite a good move. I spoke to the duty Doctor, who went through what medications I am on currently. I had stopped using the Butrans patches, because I was finding them really itchy and they were leaving a rash on my back, but the Doctor told me that there is a tablet form of that particular drug that can be taken instead! I was also taking Tramadol, 100mg four times a day. He told me that there is a tablet form of Tramadol that is a slow release over twelve hours and he suggested that it might be worth taking one of these at night, to cover me over night.
He did a prescription for both of these medications and I was able to get them the same day. I tried the Tramadol that night and I was able to sleep through the night. I am continuing to use it and it is definitely helping. I am still getting pain, but it isn't severe all of the time. I woke up last night, but my hands were painful but very uncomfortable rather than screaming pain!
So I will continue with these meds, until I go for my pain clinic appointment on February 17th.

It has gone very cold again over the past couple of days. I am sat here, writing this, with three layers on and the nerves all over my body are flickering like mad. There must be some relationship between my sensations and the cold. And also the heat in the Summer! I can't win!
And I must just tell you that our new healthy eating plan is going really well. Martin & I are following Weight Watchers, which we have been doing for almost four weeks. In the first three weeks I have lost a fabulous 14lbs! I am not surprised because I have a lot to lose, but it is a great start! I already feel thinner and that can only be a good thing. I am expecting for the weight loss to settle down and for me to lose an average of 2lbs a week from now on, but we'll see! It is making a huge difference that my head is in the right place for losing weight. I have wanted to do it for a while now, but I just didn't have the will power or the heart to stick to anything. It helps that Martin and I are doing it together, because it just feels like we have changed our habits rather than being on a diet. That is what I like about Weight Watchers, you are allowed to eat anything, just in moderation!

A new year and a new start, long may it continue!
XxXxX

Pain, Pain, Go Away............

2010-01-27T19:20:00.004Z

It's been a tough couple of weeks, again :(
I have been experiencing lots of pain. I spent a few nights waking up at 4am in agony. My hands were just so painful. It's been really difficult because of the cold, but even though it has warmed up a bit, the pain hasn't subsided at all.
I have also had pain in my feet, up my legs and in my lower back. It is driving me crazy.
My feet hurt a lot. It is a strange sensation, like sand or grit is rubbed all over the bottom of my feet. As you can imagine, it makes walking rather uncomfortable. But I have to switch off from it, otherwise I wouldn't walk anywhere!
And the pain that goes up my legs feels as though the nerve endings are going haywire. It is similar to the sensation I have had all over my body, so I guess I should feel lucky that it is just in my legs eh?!
The pain I get in my lower back, is a burning pain. It sometimes feels as though someone has got a handful of pins and is stabbing them into my back.
As you can imagine, put all these feelings together and it is not a pleasant experience at all.
You learn to live with it to some degree, otherwise it would just dictate everything. But at the moment, I am really struggling with it.
When I had my last Tysabri infusion, I spoke to the MS nurse about it. But because I have had a referral to the pain clinic, they are going to wait and see what the outcome of that appointment is.
That is all very well and I appreciate that they have pretty much run out of ideas, but it doesn't help me at this point in time. The appointment is on February 17th, three weeks away!
I rang the nurse again today, because even though I know they can't help, I felt they still needed to know that I am having a hard time with this. Unfortunately neither of the nurses were there. I was advised that it might be worth contacting my GP, so I am going to try and make an appointment tomorrow. I'm not sure that it will do any good, but I need to talk to someone about it.
I am a little concerned, that could this be a relapse?
The definition of a relapse is the onset of new symptoms or the exacerbation of existing symptoms, for a period of more than 24/48 hours. I have my pain symptoms on a daily basis, but there are periods where it is a lot worse than other times. This is one of those times and it has been about three weeks since it started getting worse, so does that make it a relapse??
I've had MS for over seven years, you'd think I'd know by now if I'm having a relapse. The problem is, that I have had relapses in the past where my legs have lost mobility or the right side of my body has gone numb. It's not like that this time, but that doesn't mean it's not a relapse, does it?

Another thing that happened today, is that I had an ultrasound on my bladder and kidneys. It was partly to check whether I am emptying my bladder properly or not. They are sending the results to my GP, which will take about a week, but I was told that I hadn't emptied my bladder fully. I'm not entirely sure what this will mean for me, but I guess I will find out in about a week.

Some good news! We will be picking up our new car on Friday morning! I can't believe that it has been delayed for so long, but it doesn't really matter! It just means that we have had the PT cruiser for about ten days longer than we should have done and I'm not really sorry about that, as I will be sorry to see it go on Friday! I am really looking forward to getting the new car though. It is always exciting, partly because I can't believe that we get a new car every three years. This is our third car on the Motability scheme and I still find it laughable that they let me have a new one!! It is a great scheme though and I wouldn't still be driving, if it wasn't for the scheme, so I have the greatest respect for it.
Nissan Note, here we come!!

And finally, a concert update. We have only had three rehearsals so far, but only one full rehearsal, where we were all there. We have another one on Saturday afternoon, which I am looking forward to! We have gone through the first group number and we have allocated all the solos & duets etc. On Saturday we will go over the numbers we did before and then start on the song that ends Act one. It is a fabulous number, which is actually two numbers put together. It is quite complicated, so we will need time for everyone to learn it. But it will sound amazing!!

Take care everyone!
XxXxX

I Really Hate Fatigue and Pain!

2010-01-18T20:36:00.007Z

So another week starts!
Last week was a bit of a strange one, because so much seemed to happen, so I am looking forward to a quieter one this week.
I haven't been feeling too great today. I have been really fatigued over the weekend and it has still been affecting me today. It is so hard to keep yourself feeling positive and up beat when all I want to do is to curl up and sleep.
And pain is also a BIG issue. Although, I have had an appointment from the pain clinic, which I am quite pleased about. It's not until mid Feb but I have waited this long so I can wait a little bit longer, can't I?!
I just get so frustrated, nothing I try helps with it and I just get the feeling that I am doing something wrong. I know that is really silly, because it isn't my fault that this is happening, but it is just so frustrating. When you experience pain on a daily basis, it gets to a stage where that is all you can think about. And there is so much more to life than pain!!

Over the weekend, we started rehearsing for our concert, Closer Than Ever. It is so exciting and really good to be focusing on something else. We are performing it at The Little Theatre, Torquay, on June 25th & 26th.
We performed this piece of work in 2004. Last time we did it, there were four of us singing, but this time we are doing it with seven singers. We have the original four and then three other friends are joining us. It is so good to be redoing it, as it is such a great body of music.
It is made up of a collection of songs that are about all different types of relationships. There are solos, duets, trios and group numbers and each number is fantastic in it's own right. It is quite rare to have a show where every song is a good one. We have a really great group of people involved and that makes it really exciting to be a part of.
I am really excited to be doing another fundraiser for the MS society again. We are doing it for the local branch of the MS society and also for Rowcroft, which is a local care facility for people with cancer. The past two fundraising concerts we have done, we have raised a total of £2500. I'm hoping, that by doing this one for the two charities, we will be able to fill the theatre and raise more money!
It is good to be singing again, even if it is only rehearsing every couple of weeks!

There is no news on my new car yet. We were supposed to be changing it on Wednesday, but I think the recent snow and cold weather has caused the transit of the new car to be delayed. Hopefully it will only be a few days late but we'll see!!

I hope everyone has a great week!
XxXxX

What a week!

2010-01-14T14:44:00.006Z

It's been quite an eventful week this week. I have had deliveries, my infusion and a possible date for changing my car!

So it was Tysabri infusion number eight on Tuesday.

It went OK, although I was struggling with pain a lot, so I had trouble emotionally. The infusion itself was alright but it knocked me out again, as it seems to do every time I have it. I fell asleep in the car on the way home and then slept quite a bit once I was home.

While I was at the hospital, I had a word with the MS nurse about my pain. I told her, how I feel that I am doing something wrong, because nothing I do seems to help - and believe me I have tried lots of things - she assured me that it isn't anything that I am doing or not doing. It is just one of those tough things, I have symptoms that cause me a lot of pain and it is just incredibly hard to manage those symptoms.

They have done a referral for me to the local pain clinic, but I have been waiting for so long for anything to come of it. I was assured on Tuesday, that the referral had been done and I just needed to wait for a date, but she would chase it up for me though.

Yesterday I got a phone call offering me an appointment, it's on February 17th! So I am keeping my fingers crossed that they can come up with something new to help.

On Monday, I got a surprise.

I had a phone call from someone saying they had a wheelchair to deliver to me and could they deliver it that afternoon! It was a bolt out of the blue. I knew the referral had gone off, but I was expecting to have to go up to Exeter to try it out first!

So I have my own wheelchair!

Because I wasn't expecting it, it threw me a little bit. I haven't really got my head around having one yet. I know it will help me and will allow me to have more energy etc, but actually using it is another matter! Because I can still walk, even if it is with crutches and using the crutches hurts my hands, I still feel that I should be walking.

Anyway it is sitting in the living room at the moment. It is good to have it there, so that I can look at it and get my head together about it. I did think about hiding it away somewhere, but I think this is better!

I have also decided to customise it with some of my Me To You stickers! I am a huge fan of the Me To You bear - the tatty teddy with the blue nose. I have collected a huge number of the figurines and a large number of the soft bears and now they have bought out blue nose friends, so I am having fun collecting those now too! So I figure that this will be a good way to make the chair my own!

On the same day that the chair was delivered, I also had a call from social services about fitting a grab rail in my bathroom. He wanted to know if he could pop round that afternoon, which was fine, so I now have a rail up in the bathroom too.

I hate having these things put up in the house for me, although I know that it does make things easier for me. It's the principal of it though!

The final thing that has happened this week, is that I rang the garage where I am getting my new car from. I knew that the date for me to give my PT Cruiser back is January 20th, but I wasn't sure when they were expecting the new car to come in. I have been told that they are expecting it in at the end of this week. They have contacted the people who put the adaptions in and as long as it goes to plan, then I should be able to exchange my car on the correct day - January 20th! I will be sad to give the PT back, because it has been a great car to own (apart from the fuel consumption) but it is always exciting, getting a new car! I know that I have made the right decision getting a car that I can drive, and not spending so much on fuel will be a welcome bonus!

I hope everyone is coping OK, especially with this cold spell we have been having.

Take care!

XxXxX

Snow & cold!

2010-01-10T10:22:00.004Z

Hi everyone................I'm back!

I hope you have all had a really good Christmas and New Year. And I also hope that you have all recovered from the celebrations!

I am pleased to say that we had a lovely time. I managed through the week quite well, but of course, afterwards I had a bit of a fatigue crash! That's to be expected though........isn't it?!

Throughout the beginning of January, we have been experiencing very bad weather conditions. Very cold temperatures along with snow and ice.

I wanted to ask people whether the cold weather has been affecting any of your symptoms?

I have been struggling really badly with pain. And my hands have been especially bad.

In fact, last night I was awake at about 4am with severe pain in my hands. I tried to go back to sleep but that didn't work, so I got up and went downstairs, to try and distract myself with the television. I just didn't know what I could or should do to help myself.

I felt really bad for Martin. He desperately wanted to know how he could help me, but I didn't even know how to help myself, let alone tell someone else what to do. It's horrible because I put myself in his shoes and I would be so frustrated and upset at seeing someone I love going through this.

I have Tysabri infusion number eight on Tuesday, that is, as long as we can get to the hospital! I am definitely going to speak to the nurse about these heightened symptoms and what I can do to help the situation.

It's a New Year and a new start for us, in our household. We have decided that it is about time to change our eating habits and to try and have a healthier lifestyle!! I'll let you know how it goes, but so far so good. I have tried all sorts of diets etc in the past, but none have ever been long lasting. So that is why we are looking at a lifestyle change, so that it can be something more permanent! I have to admit that I feel really good about it this time. My head seems to be in the right place for doing this. I have tried in the past, when my head hasn't been right and it just doesn't work. You have to want to do it and I am pleased to say that we both want to, which makes a big difference. I am hoping that I lose some weight. I'm not sure what affect the medications will have but I am not going to let that stop me! Also, when I have lost weight in the past, I have always been able to exercise. That is an issue now though, due to the lack of mobility. We have a Nintendo Wii though and I plan to use that to try and get a bit of movement. I will enjoy beating Martin at Table tennis at the same time!!

It is now 2010, so I can finally say that we are doing our concert this year!! We are supposed to have our first rehearsal today, but we are waiting to see what happens with the snow, as to whether we will be able to have the rehearsal! Fingers crossed though!

Anyway, it's good to be back, I hope everyone is doing well and I look forward to catching up with you all.

XxXxX

MERRY CHRISTMAS AND HAPPY 2010

2009-12-24T16:00:00.005Z

Hi everyone,

I just want to wish everyone a wonderful christmas.
I really hope that everyone who has or is affected in some way by, Multiple Sclerosis, is able to have as stress free and as symptom free, Christmas as possible.

I am going to make a pledge, that I am going to get back to updating my blog on a far more regular basis next year.
I started this blog in February this year and I have been fortunate enough to have met some amazing people and forged some great friendships. I appreciate all the support, help and advice that you have all given me, over the past year and I look forward to taking these friendships forward to the New Year.

May 2010, be a happy and healthy one, for us all.

Lots of Love and big Christmas hugs to everyone,
From Amelia, Martin, Barnaby, Kit Kat!
XxXxX

"Open & Honest"

2009-12-07T21:11:00.005Z

Hey look at this, two posts in as many days!!!

I want to ask for some advice. I probably already know the answer, but it doesn't hurt to ask anyway!

I am really struggling with a strange sensation all over my body. It feels like all my nerve endings are flickering. It is so hard to explain, but it feels to me like I have put my hand in an electric socket and all the nerves have gone haywire.

It is a sensation that I have had on the odd occasion over the years, but generally it would go away once I went to sleep and I would only feel it on the odd night. At the moment though, I seem to be feeling it night after night. I thought, a couple of weeks ago, that it might be subsiding, as it was getting less frequent but now it is doing it almost every night again.

I went to my GP, but she said she didn't really know where to go with it now. I have been quite unlucky with the pattern my MS has gone. I have experienced pain right from the start and it has been really hard to manage. My GP admits that I probably know more about the condition than she does! So she advised me to go back to my MS team, the MS nurses etc, and see what they suggest. My concern, is, that I told one of the nurses about this flickering of my nerves, last time I went to have my Tysabri infusion. But because it was starting to subside, the nurse said that it should just go away now. I was a little downhearted because I was afraid it may return and it has, so now what do I do?

I know that I really need to phone one of the MS nurses, but I guess I know that they will say that there isn't much they can do or suggest, so, I'm thinking, what is the point of bothering them? I don't like making a nuisance of myself either.

I'm also struggling with a couple of other symptoms at the moment. Fatigue is hitting me quite hard but also, I am having trouble with my water works.

This is quite hard to talk about and it feels weird to be talking about it on my blog, but when I set out to do this blog, I said I would be open and honest. Unfortunately bladder problems can be a big issue for people with MS, so I'm not going to pretend mine don't exist.

The problems I am having, are, that I need to go much more frequently and when I need to go, that usually means right then. I haven't had any proper accidents, but there have been some near misses! It also doesn't feel as though I am emptying my bladder fully, when I do go.

I have been tested for infection but it has come back all clear, so I believe that this is being caused by the MS.

When I spoke to my GP, she said, that if the results were that there was no infection, then she would look at getting an ultra sound done, so that they can see if I am emptying my bladder or not. If not, she said there were things that could be done, but that we would cross that bridge when and if we come to it!

When I put these things together, I do wonder whether it equals a relapse, but I don't even want to go down that road!!

Am I burying my head in the sand.............maybe, but I never know when things are different and I need to tell someone or when things are just due to a change in the weather or something like that!

When you have symptoms, like pain, day in and day out, I believe that it impairs your judgement after a while.

On a lighter note, I had to post this photo, it had me in stitches!

It is of Kit Kat, our little baby girl. She had jumped into an empty box that I had put on top of our stove, and she looked really cute, so I decided to take a photo. I got a couple of her lying in the box, but then she sat up and just as I was taking the photo, she yawned - priceless eh?!!

XxXxX

Cars, Singing and CHRISTMAS!!

2009-12-06T00:55:00.006Z

Yet again, I feel the need to apologise for the lack of posts over the last couple of weeks! I just don't know where the time is going at the moment.

It's not that I am really busy, but I think Martin and I are taking time to get used to our 'new' life.

That's not a bad thing at all! We are really enjoying things now. I certainly feel much less stressed and a lot more calm since Martin finished work. It's so nice to have him around to help me with things. Especially things like having a shower, it makes such a difference not to have to plan it all around when he will be here because of work! I also feel that we are making progress with the house. There are lots of plans for after Christmas, the spare room is such an embarrassment right now, so that is top of the list! But it is good to be able to make those plans and know that we will be able to follow through on it, instead of just hoping we might find the time some day!

We have been very lucky, because we have been able to sort out the financial side of things relatively quickly. We were both under the impression that it was going to be after Christmas before we had it all sorted out, but we are well on the way to being there now. It's not all done but it's a lot further along than we expected, which is a relief and going to make Christmas a lot less stressful!

All in all, I think I can say from the both of us, that this has been the best decision we could have made.

So I just want to say a big thank you to Martin, again, for giving up his job for me. I feel very special & very lucky!

As I have said, it has been a busy couple of weeks and the build up to Christmas is always an exciting one for us - we LOVE Christmas!

One exciting thing we have done, is order our new car! I finally made a decision and we have gone for the Nissan Note, Acenta 1.6 litre automatic. We went back to the Nissan dealership and I was able to see the car again. I got in and out again and just had a quick look over it and it just confirmed for me that we were making the right decision. So we put the order through!

It is so much fun to be able to order a brand new car, something I never thought I would be able to do!

I have ordered the adaptions for it too. I am having the push/pull brake, accelerator and the quick release steering peg. So I drive with my hands. These are the two adaptions I have had every time I have had a car on the motability scheme. I can't believe that we are onto our third car! We got the first one in 2004 and it is funny how much has changed on the scheme since then.

The first time, we had to pay for the adaptions and for them to be fitted, but now, the ones that I have, I don't have to pay for. We do have to pay a small advance payment, but that is our choice because of the car we have chosen. But when you work out the advance payment over three years, it's peanuts to pay for a brand new car, so I'm not complaining about that!

One new thing, this time, was that we were able to choose our number plate, from a small list that they had available. It was very funny, because I let Martin choose which one to go for. I am quite good at remembering the number plate, so I thought if he chose it, then it might help him remember it! The one he went for has NXO as the last letters. It doesn't stand out on it's own, but I laughed my socks off when I realised how he had chosen that one - he looked for the Star Trek ship's number. We couldn't get NCC, which is the new Enterprise, but he could get NXO, which NX-O1 is the original Enterprise number - priceless eh?!!

We should be able to have the car on our change over date, but it may be a week later, depending on when the car arrives and when they can get the adaptions fitted. It really is amazing, they make everything so easy for you. Once the new car is ready, all you have to do is take the old car to the new dealership, where they will take it in and deal with it going back to motability. And once you have done the paperwork, you drive out with the new car, it's as easy as that!

So roll on 20th January 2010!

Another thing that has been happening, is that I am singing again! The group that Martin and I sing in, How Apt, has got back together again, after a little break. We are working on some Christmas carols and also going over the pieces that we have done before and adding more stuff to that. A lot of promotional information has been sent out to lots of hotels, all over the local area. We have one booking for Christmas Eve, but unfortunately it will be without Martin and I, as we are going down to Bournemouth for Christmas! But fingers crossed, there will be other bookings too. Check us out at http://www.how-apt.com/

It feels good to be singing again. Each time I come back to it, I realise just how important it is to me, and how much I really enjoy it.

We have also had our first get together, for Closer Than Ever, which is the concert that Martin and I have organised for next June, to raise money for the MS Society, South Devon Branch and Rowcroft.

"Closer Than Ever" by Maltby & Shire is a concert that we put on in 2004. We had four singers, a pianist and a bass player and we raised £1000 for the MS society. This time we are using eight singers, a pianist, bass player and drums and we plan to raise even more money this time.

It was so good to get together and just sing through some of the material again. We just love singing this music, it is fabulous. Every song in it, is a great song.

This is the link to the information about the concert, scroll down to the last item in the programme and that is us!

http://www.toadstheatre.co.uk/programme.html

I also feel quite humbled. I have these friends, who are willing to give up their time and to put in all the effort to perform this, because I have MS and they want to help.

How lucky am I?

XxXxX

Tysabri Number Six

2009-11-22T21:10:00.003Z

This week was Tysabri number six.

I am pleased to report that it went better than it did the last time, although it didn't go without a hitch............unfortunately!

I arrived at my allotted time, but had to wait, which is becoming very normal!

There are a group of about six of us, who all go down to Plymouth on the same day. The difference between myself and the others, is that because I have had the portacath fitted, I have to wait for a registered nurse to be able to sort out my portacath, where as the others can get their cannula's done and away they go with their infusions. I'm not complaining though, because I am becoming more and more convinced that this was the right way to go.

Emla cream is a magic cream that nurses put on the back of children's hands, when they have to put needles in, so of course, I have asked to have this cream put on my scar before they put they needle in! It does work though! I realise that I have altered sensations all over my body, but it always surprises me, all the different ways it affects me.

Unfortunately, this time, it took two attempts to get the needle into the port. The first time, it didn't go in properly and when the nurse tried to flush it, nothing happened. So she took that needle out and tried again. This time it went straight in, and hit the back of the port. It flushed well, so she hooked up the infusion. I lay back straight away, this time, because last time, when the infusion went in, it hurt like hell. I really thought they might have to stop it last time, but it didn't happen this time, so I think I may have sorted that out.

The main issue I had this time, was that it virtually knocked me out, almost as soon as it was administered. I really struggled to keep my eyes open. It was very strange. But the good thing about that, was that the time went very quickly!

Once it was finished, Martin was able to drive me home, where, I just crashed out for the rest of the day.

I still can't say whether it is having any affect or not. But I need to keep giving it a chance!

I am still experiencing this horrible flickering of my nerves all over my body. It is such a strange sensation and one that really causes me quite a lot of pain. It is very disturbing.

Some good news though, I have finally got an occupational therapy appointment on Wednesday morning! The lady is coming to the house and hopefully, we will be able to talk about my need to have a wheelchair, but I am also going to talk to her about our bathroom. I want to see whether we will be able to get our bath taken out and a double shower put in, so that I can put a shower chair in there and I won't be so reliant on Martin to help me with a shower. That isn't to say I wouldn't still need his help with washing my hair etc, but it would make me feel just a little more independent.

I really want to sort out a wheelchair though, because I think it would just take the pressure off me. I still think I would push myself a lot to walk places, but when I am in situations where there is a lot of walking involved, it will give me the choice. Then it's up to me to make it eh?!!

So, I am looking at the week ahead. I can't believe we are into the last week of November.

It will be December very soon, which means CHRISTMAS!!

Martin and I get very excited about Christmas! It is such an enjoyable time of year, and we do our best to enjoy it as much as possible.

I cannot believe that another year is nearly passed and when I look back over the passed year and see how much as changed for Martin and I, it is quite bizarre. But I would like to think that we are in a better place now than we were this time last year - long may it continue!

XxXxX

Another week goes by.......

2009-11-14T22:54:00.004Z

And it has been quite a mix of emotions.

Last weekend was a really difficult one for me.

I struggled really badly with MS symptoms. The nerve endings, all over my body, went haywire. It felt as though I had put my hand in an electric socket - not that I know what that should feel like. The nerves seemed to be flickering all over my body.

It kept me awake on Friday night. I went to bed, but just couldn't sleep because of the weird sensations and it also felt oddly painful. I experience so much pain, in so many different ways, that it is difficult, sometimes, to work out if it is pain or not. But this was.

I got up, because there was just no point lying there, getting more and more frustrated. I eventually went back to bed at about 4am and got a couple of hours sleep, only to get up again, when I woke up about 6.30am. The trouble is, when you have such a disrupted night's sleep, it has a knock on affect. It did for me, for the rest of the week.

This sensation that I was experiencing, I have had before, but in the past I have been able to go to sleep and it's gone in the morning.

It's been different this time. It started on Friday evening, but after a troubled night, I then experienced it again on Saturday night. And I have felt it on and off all through the week. It hasn't stopped either.

The pain level in my right hand has increased slightly too. Does this mean I'm having a relapse? I have no idea and I have been reluctant to contact anyone, partly because I have Tysabri number six on Tuesday of next week, so I will probably see an MS nurse while I am there. I also haven't contacted anyone, because I never know whether it's a relapse or not, when it's not a drastic physical change. I feel that maybe I'm just making a fuss - please don't shout at me, everyone!

The other thing that has made me think possible relapse, is a change in my waterworks. I apologise to anyone who feels uncomfortable reading about me and my bladder, but it is a common symptom of MS, so I don't feel I should hide it.

I am finding that I am having to go far more frequently and I am never convinced that I have emptied my bladder when I have been. Over the years of my diagnosis, I have suffered with hesitancy, which I do still get, but I have noticed a real increase in the amount of times I need to go. It is making me aware of how much I can drink, before I am going to need to go again. It isn't something that is having a drastic impact on my life, at the moment and I hope it won't for some time to come, but it is something that I need to acknowledge and I guess I do need to let my GP, or the MS nurse know about this change.

As I have said, I have Tysabri number six on Tuesday. I can't believe just how quickly it comes round every month. I still don't feel that I can comment on whether it is having any affect on me. But after only five infusions, I didn't really expect to. I have no intentions of coming off it, at this point in time. I have been through too much, what with the veins and the portacath, so I definitely want to give this treatment a decent chance.

It will be my second infusion with the portacath, so I will let you know how it all goes. I still feel quite freaked out sometimes, when I feel it under my skin! But I just remind myself, that it is serving a purpose and stopping me from having to go through vein hell!

I can say, that we have chosen the car that we are going to go with next! Hooray!

It has been quite a difficult decision this time. Both times before, we had a clear idea of which car we were going to go with, but this time, we really didn't know.

We test drove the Citroen C3 Picasso first. It is a lovely car to look at. It ticked the box for getting in and out and it appeared to have a fair amount of space. It comes as a diesel too, so the fuel consumption is quite impressive. On the down side, it only comes as a manual though, so I would have to give up driving. Martin actually drove it and felt it was a nice car to drive. I had almost decided, in my mind, that this was the car for us. But before we made the decision, we both knew we had to go and test drive the Nissan Note, which was the other car we had short listed.

We were shown around a model in the showroom, which was the exact model we would go for, if we decided on this car. I have to admit, it surprised me quite a bit. From the outside, it doesn't look like it should have that much space inside, but they have designed it very well. It has a split level boot, which the Citroen has. The back seats go down, which the Citroen's do. But the back seats are also on a runner, so you can move it forward or back as you need it. The Citroen doesn't have this.

It has cubby holes all over the car, which again, the Citroen does, but the Nissan has them in really sensible places. There is a cool box in the glove box, when the air conditioning is on. You can lift the passenger seat up to expose another storage area. There are fold away tables, with cup holders, for the back seats. And the bit that clinches it for Martin is, there is a decent audio system already fitted!

Martin drove this one, as well and said that this one felt a little more stable to drive. It comes as an automatic, so I will be able to drive it and it is a petrol engine. This means that the fuel consumption won't be as good as the Citroen. And this is a point that has had me hesitating. But the Nissan has a much better mpg, than our PT Cruiser has, so it will be an improvement no matter what.

The other thing to consider, was, that the Citroen comes with a nil advance payment, but the Nissan model of comparison, will cost us £199.

So after comparing the two models and ultimately, me deciding whether I still want to drive, which I have decided I do, we have chosen the Nissan Note. It will be £199 well spent - I hope! Yay!

Before I finish, I would like to just ask people to send a thought and perhaps a prayer, to three people who are struggling for their lives right now.

I have mentioned, in one of my past posts, about a seventeen year old German boy, called Dustin. He has had numerous heart surgeries, been in a coma and has had to deal with more in his young years, than most of us could imagine. He went to America, to go on a new therapy, in the hope that it would extend his life expectancy, but sadly, it doesn't seem to be working and he has been told he only has a couple of weeks to live.

If anyone would like to read his blog, the link is

http://www.duselk.blogspot.com/

He is an inspiration and also an amazing artist, just take a look at the drawing on his last post.

God bless you, Dustin.

And then, there are two people, in Plymouth, who are currently fighting for their lives. Lynsey and David. Lynsey is a friend of ours, who we know through the local theatre scene. They had a car crash last Sunday, which has sent shock waves through the bay. There is a huge support network, which has been set up on Facebook, and there are a lot of people sending positive thoughts and praying for both of them.

Please spare a thought for them, if you would.

XxXxX

Choosing Car Number 3!

2009-11-06T22:40:00.005Z

Oh, I really wish I could get myself organised and write more posts, more often on my blog!!

Anyway, here I am and another week has gone by.

I am pleased to say that Martin and I have not scratched each others eyes out, by being around each other all day!

In fact........... and I apologise for being soppy..........actually, no I don't - but it just feels even more special to be able to spend time with him and to get things done too!

The first week was taken up with getting applications done for the relevant benefits to apply for. We knew it was going to be a lot of paperwork, but wow, I feel like we have used up a tree's worth of paper! Why do they insist on asking the same questions, over and over, just in several different ways? It is very frustrating!!

I finally feel like we are achieving things around the house. The lounge is looking a lot more organised and far tidier!

We have a lot of pictures and Disney art, that were taken off the walls, so that decorating could be done. They haven't made it back on the walls for well over a year, but finally, we are starting to get them put back up - it feels so satisfying!

The one thing we have been able to do, without trying to squeeze it in on a weekend, is go and test drive some cars.

I am lucky enough to qualify for a car on the Motability scheme.

I thought they were mad, when I was told that I would be able to get a brand new car, to have for three years, after which, I could change it again for another brand new car! I had never had a new car in my life!

This was back in 2004, when I first qualified for the Higher mobility rate on my DLA (Disability Living Allowance).

The first car we went for was a Peugeot 206. At that point, we didn't really think practically, we just went for what we wanted!

I was also astounded, that I could get it adapted, for me to drive it with hand controls.

Drive, with my hands, were they mad?!

It totally changed my life. I hadn't driven for about six months as I just didn't trust my legs, and I knew I would never forgive myself, if anything happened, just because I wanted to drive.

I was told about hand controls, and I was given an assessment, to see what I would need. I was just blown away - I would get my independence back!

I have a push/pull accelerator and brake, which fits under the steering wheel and attaches to the pedals. It has to be an automatic car for the attachments to work. I also have a steering peg, that fits on the steering wheel, to allow me to steer with one hand! But the pedals are still there, so Martin can drive it with his feet, as a normal car.

After a couple of years of driving the Peugeot, things had got a little more difficult for me. By the end of the three years, I was finding it really difficult to get in and out of the car. And it wasn't really big enough, if we wanted to fit any equipment in it, like a wheelchair or a scooter. So a few months before the contract was up, we started looking at what to get next. But this time, we did look around and tried to think practically about it.

For car number two, we decided to go for a Chrysler PT Cruiser. Wow, what a car! We did test drive the Vauxhall Astra too, but there was no contest!

Again it was fitted with hand controls. I felt like a kid with a new toy! It was so much easier to get in and out of and there was so much space in it. It had a lot more room in the back seat area, so I felt like I could ride in the back, should I need to.

This car has been a total joy to own, but the downside to this car has been the fuel consumption. We knew before we took it, that it would be a thirsty car, after all, it has a 2.4 litre engine! But with the price of petrol increasing like it has and with our circumstances changing, financially, it has not been the cheapest car to run.

So now, here we are again, getting ready to choose car number three!

Where as with the previous two, we had a clear idea of what we wanted, this time we didn't. I had been looking around at different models for a while, but there was no front runner. Then I came across the Nissan Note. I liked the look of it, it has a quirkiness about it! I looked it up on the motability website, to find out if we could get one. They have an automatic model and the advance payment isn't too bad.

Then I noticed an advert for a Citreon C3 Picasso. I loved the look of it! Again, I looked on the motability website. We could get this model for a nil advance payment, but it doesn't come as an automatic. I thought about it for awhile and discussed it with Martin. Did I need to drive? I was considering giving up driving. Martin is now my full time carer and therefore will be around to drive me, and since my last relapse, my right hand has not been the same. The sensations in that hand are constantly altered and there is always some degree of pain. I can still drive, but not without discomfort.

I wasn't convinced either way.

So we went to look at the Citreon first. It was brilliant. It was easy to get in and out of, there is a lot of space in the boot and the back seat area. And it comes as a diesel manual, so the fuel consumption is great. Martin test drove it and felt quite comfortable doing so.

We both felt that this could be the car for us. BUT, we still wanted to test drive the Nissan, just to be sure and I needed to be sure about giving up driving.

We went to see the Nissan Note. And I have to say, I was pleasantly surprised. It is quite deceptive, because there is a lot more room inside, than it looks like there should be from the outside! Again it is easy to get in and out of and it feels really comfortable. Martin test drove it and he felt it was a bit more stable to drive. I certainly felt good in the passenger seat.

It comes as an automatic, so they can get the hand controls fitted and I would be able to drive it. The fuel consumption isn't as good as the Citreon, because it is an automatic and it is petrol, but it is still better than the PT!

So we are now left with a dilemma!! Do we go for a manual car that is diesel so has good fuel consumption, but that I can't drive, OR, do we go for the automatic car, that has lots of space and I will be able to drive, but the fuel consumption isn't so good?

We have still to make our decision, so watch this space!!!!

XxXxX

Our New Life Begins!

2009-10-28T19:04:00.003Z

Saturday 24th October - the day our new life officially began!

Martin finished work on the Friday and that was that!

It was a strange week, because I had my 5th Tysabri infusion on the Tuesday and what a day that turned out to be!

It was my first infusion, where they were going to be using my portacath from scratch. I was a little apprehensive, but I wasn't going to stress myself out. Unfortunately, what did stress me out, was the fact that my appointment at the hospital was at 9.30am, the same as it is every four weeks. But we arrived there, to be met with chaos and to be asked if we could wait in the waiting area outside the ward. There ended up being four of us waiting for our infusions, sat outside in the waiting area.

Unfortunately, there had been a problem with beds over the previous weekend, which had had a knock on affect for everyone else. It couldn't be helped, but it was very frustrating. Especially as all four of us travel about 45 miles or so to get to the hospital in Plymouth, because they can't administer it in Torbay..................yet!!

In fact the majority of us, who are on Tysabri down here, are from the Teignbridge/Torbay area, rather than from Plymouth - daft eh?!

Anyway, at about 12.30pm, I was called through, as they had a recliner chair for me. But the next problem was, that I needed a registered nurse to be able to deal with my portacath. She didn't come along until about 2pm. I then had some cream put on, to numb the area for me. Then about 20 minutes later, the nurse came back. She popped a needle into the port and then flushed it and made sure it was working. Following all that, the infusion was started at 3pm!

I struggled with it to begin with, because it was so painful as it was going through. The pain spread right around the port and up into my neck. I thought I might have to stop it, which immediately upset me, because my first thought was that they would take it out and I just couldn't bare that. Anyway, I thought about how I was positioned when they administered the infusion straight after I had had the portacath fitted. I realised that I was lying down. So the chair was reclined and as the infusion progressed, so the pain subsided.

I was kept for my usual hour, after the infusion was complete, but at 5pm, my day at the hospital was complete and we were allowed to go home!

My Father, who had driven me down that day, had offered to give a fellow MSer a lift home, so we got to the car, we all piled in and I promptly fell asleep. This is fairly typical after an infusion, as the Tysabri tends to knock me out for about 24hrs after the infusion.

But I had successfully managed to get through the infusion, using my portacath. So fingers crossed, it will be less and less painful as we go along with it - only time will tell!!

Once that drama was finished with, we then got to Friday. I must admit, it was strange to wave Martin off for his last day at work. As I know it was strange for him to think he would be driving a bus for the last time! The whole day was quite surreal, because it was the same as any other day and yet it wasn't for us!

The weekend was pretty typical and nothing special. It hadn't really hit us at that point.

The week so far has been filled with trying to get forms to the correct places, filled out correctly, so that we can start getting the benefits that we are entitled to.

It is like wading through thick mud. And the most frustrating part of it, was the fact that we couldn't do anything, until Martin had finished work. We wanted to try and get it all processed, so that the money could start coming through once Martin had finished, but NO! We have to live on nothing for about six weeks or more, while they decide whether we are allowed to have the money or not!! You see our frustration!

But I will say this. Already I am feeling more relaxed. It is wonderful to have Martin around, making sure I am OK and helping me with all those "little" things that I have struggled with for so long. The house is already feeling tidier and we haven't started sorting out all the rooms properly yet. (Or got to the list that I have secretly been making - women are so good at making lists!) But the fact that Martin is here to be able to keep on top of it, feels wonderful.

We are eating dinner at a sensible time, instead of any time after 7.30pm, because he wouldn't get home until then when he was working.

It is already feeling so good.

Long may it continue!

XxXxX

So much to tell you!

2009-10-19T12:20:00.003+01:00

OK, so there has been a lot happening in my life, over the past couple of months.

I started on Tysabri, I have given up work, I have had a portacath fitted and the one that I haven't told you about, is that Martin is giving up his job, to become my full time carer.

It has been a really difficult few months, I can tell you that, but when you come to a point in your life where there is a junction and you can go one way or the other, after a lot of discussions, this just seems to be the correct path to take.

It is not something that anyone can just decide to do, and I have to admit, we didn't realise how complicated it would be.

We had to be sure that this was what we both wanted. And to be absolutely honest, it is. It has come down to quality of life.

I had to be able to admit that I was struggling. I was struggling with work, it was causing too much stress, so that had to go. But then I am also struggling with things around the house. And that has been the difficult thing to admit. The fact that I am not able to do the washing up without pain, or do the cooking and cleaning. I am 36 years old, I shouldn't need help around the house. But the hard facts are, that I do.

I was also getting the portacath fitted and I need to go down to the hospital every four weeks for an infusion, so who did I want to help me with all of this. There was only one answer - Martin.

But Martin was already doing a full time job and he was also trying to do all the necessary things to help me around the house. He just couldn't do both.

The turning point came, when Martin had a week off work. That week was wonderful. We were both really chilled. I felt that he was very attentive to my needs, the housework was all done and we just felt really calm.

The solution to our problem seemed clear to us, but we had to see whether it was possible.

The first thing we did was to contact the CAB - Citizens Advice - because we knew that if they didn't have the answers, they would know someone who did! As it happens, in this area, there was an MS advocacy officer. She was able to come out to our house, go through everything we wanted to achieve and then tell us what was available to us.

After a lot of facts and figures whirling around, we had to decide whether it was something we could manage - financially, I mean. We both agreed that there were things that we could do without, so we worked it out accordingly.

We know that it won't be easy. It is a life changing decision and one that we will adapt to. But the important thing is that it is what we both want.

So Martin finishes work on Friday!

I am excited but also a little apprehensive. I am only apprehensive because we can't sort out the financial side until Martin finishes work. But once that is all sorted out, then I know we will be fine.

I had to be sure in my own mind, that this was what Martin wanted and that he wasn't doing it because he felt he had to. I guess I didn't want him to resent me a few years down the line, because the direction our life has gone, has been dictated by the MS. But when we discussed it, we both realised that this is our way of taking back some of the control. We are able to decide what and when and how, before we get to the point where the MS forces us to make these decisions.

I am so lucky. I have a man in my life, that is willing to do this for me.

Thank you Martin.

So Saturday 24th October 2009, is the start of our new life - bring it on!

The other thing I wanted to talk about today, is my portacath.

I have my fifth Tysabri infusion tomorrow and it will be the first time that we will be doing the whole procedure of using the port.

Although I have had some problems with the wound on my neck, the actual port wound has healed very well. I have a scar above my right breast, but that will fade in time, I am sure. I also have a scar on my neck, which I think will take longer to fade, but again, I think it will in time.

The one thing about it all though, was when we took the dressing off the port area and left it off, I got quite freaked out. I suddenly realised that someone had put a knife to me and planted something in my body. And I could feel it! It is getting easier to deal with but I would be lying if I said I wasn't scared about tomorrow.

I am terrified!

I know, by this time tomorrow, when the infusion is all done, I will wonder what I was worried about, but for now, I am scared.

I know that they will feel around for where it is, they will then pop a needle in - that is the bit I am freaking about! They will flush it etc and once that is all done, they will hook me up to the infusion and away we go.

I know that this will be far less stressful, than them having to cannulate me. That is why I have had this done. So I know that once tomorrow is done and I have got the first experience out of the way, I will be fine. It will be so much easier, for everyone involved.

I know all this, but I am still terrified!

So wish me luck!

XxXxX

Awards!

2009-10-08T13:12:00.005+01:00

I have today found out that I have won some awards from my dear friend, Herrad.

She is the most inspirational person that I have ever had the privilege to talk to and I feel quite humbled that she has past these two awards on to me!

If you haven't come across her amazing blog yet, the address is

http://accessdenied-livingwithms.blogspot.com/

Herrad and her partner, Richie, deal with more in life than anyone of us should ever have to deal with. But they both do so with poise and dignity and I feel truly blessed to have come across them both in the blogging world.

I will, of course, be passing these awards on to people, but I would like some time to catch up on some of my reading first.

Although there are a couple of people, whose blogs immediately spring to mind and so I would like to pass these awards to them straight away.

Tara at http://livingdaytodaywithmultiplesclerosis.blogspot.com/

Living with Multiple Sclerosis is a daily battle. MS is the invisible disease or at least for most people. We fight many emotional and physical symptoms all the time. We need as much support as we can get. However due to the invisible symptoms we tend to not get a lot of support and that brings on more emotional stress which in return brings on more MS symptoms. A Vicious cycle.

Tara's blog is always so bright and sunny and she is constantly trying to educate people about MS. Good on you Tara, and keep at it!

Nat at http://beansmail.blogspot.com/

Nat's blog is such a diverse blog. She talks about so many different things that it is great to pop along and see what is on her mind each day! Her wonderful photos of pond life are fabulous!

Lots of love to all the bloggers out there.

It is such a great support network. I am so glad that I decided to start mine, I have found it therapeutic for myself, to actually get things off my chest, but then to get the responses and support from people out there who really care about what is going on in my life and the fact that we are going through it together and we are not alone, is something that I am very proud to be a part of.

Long may it continue!

XxXxX

My Work Story!

2009-10-06T15:25:00.005+01:00

Sadly, for me, on Tuesday 15th September 2009, I handed in my notice at work.

I am no longer an employee at Asda.

It was a really hard decision, but one that I needed to make, for my own health.

Here is my work story!

I was diagnosed with MS in 2002 and at that point, I was working in an office doing order processing.

From the time I had my tests and all the doubt and uncertainty that went with that, I didn't work for them for almost twelve months. I then decided that it was time for me to try and return. I knew I needed to take it slowly, so I agreed to just go back and do three mornings a week for about 3 hours at a time. I was able to do it for a little while but then about two months later, I had a big relapse. This was when my legs went and I ended up in a rehabilitation centre for about six weeks. I quickly realised that I might be putting too much pressure on myself and so I cut it down again to a couple of hours at a time for only a couple of days a week.

I remember having an appointment with my consultant and asking him what I should do about work. He was not too impressed that I was back at work, no matter how little the hours were. He wrote a letter to my work explaining that, as we hadn't got things under control at that point, it was unrealistic to think I would be back at work within the next twelve months.

As you can imagine, that went down well!!

I was referred to the company occupational health officer, who came and saw me at my house. I remember the meeting, because I have always remembered something he said to me.

He said that the only predictable thing about Multiple Sclerosis was it's unpredictability!

That has always stayed with me because it rings so true!

Anyway, it was discussed that maybe I should think about leaving. Giving myself time to concentrate on me and the MS and also allowing myself time to get my head around it all. I also realised that I was trying to go back to a job that I had done when I was fully fit. It was really hard to put that out of my mind.

So I left my job in the office in 2003.

I spent a lot of time trying to get my head around everything, but really, do we ever get our heads around it?

Time went by. In 2004, Martin and I put on our first concert, raising money for MS. That was something that would take quite a bit of time!

Eventually by about Easter of 2006, I was starting to get itchy feet. I talked to Martin about the fact that I really felt that I wanted to try and get a job again. He was fairly reluctant about the idea to begin with. He felt that, because I had tried going back to my office job and it hadn't worked out, he was concerned that I would be disappointed if it didn't work out again. A fair point, but I just needed to try. I needed to have a purpose. I needed to get out of the house and be in a situation where I had responsibilities again.

There was a new Asda supermarket being built in my town and I decided that I would apply for a job there, as I knew they would be hiring lots of people.

Asda have quite a tough hiring procedure. You have to pass the application form, then you have to go and take part in a group session and then you have a one to one interview.

I was so pleased when I got through all those processes and was hired as a checkout operator.

I was totally upfront and honest about the MS - it's a bit hard to hide the crutches! They didn't have a problem with the fact that I would only be able to manage on the checkouts and of course, it was a tick for them, to be able to hire a disabled person.

I started there on July 12th 2006. I was so chuffed!

I was able, over time to adjust my rota so that I was comfortable with the hours I was doing. I started off doing 14 hours a week, but by the time I had finished I was doing just under 12 hours a week. And my shift times had changed over the three years too.

When I started, I had big ideas about maybe eventually being able to go full time. It quickly became apparent that I was not going to manage that. So I lowered my sights!!

I did think that I would be employed there for a good few years, but that was not meant to be either.

This year has been a difficult one, as far as the MS is concerned. I had two relapses within the space of four months. The last one, I am still dealing with the symptoms, which include numbness down my right arm and hand, along with lots of pain.

Because of the latest relapse, which happened in July, I had been off work from the middle of July anyway. I really wasn't able to manage my duties, even the office duties, which I tried to do, when I attempted to go in for a shift in August.

The problem was, that I was getting myself very stressed about not being at work. I felt I was letting everyone at work down, I was letting Martin down and I was letting myself down. Of course, no-one else thought that, but I couldn't help thinking it. And it was really stressing me out.

I sat down with Martin and we talked about it. We came to the conclusion, that I really needed to put a stop to the stress, because it was just aggravating my symptoms.

So the decision was made. I took my resignation letter into work and saw the people manager, who was so lovely to me. She wanted to give the letter back to me and try and sort out putting me on a different contract, so that I could manage it a little better. I was very flattered, but as I said to her, all the time I have the possibility of a job to go to, then I am going to be pressurizing myself to get up and go to that job. I just couldn't do it any more. She has said that there will always be a job for me though, which is a lovely way to leave.

I was so upset at having to leave because it meant a lot to me to be able to go and work with a bunch of people I really enjoyed working with. But, since I have made that decision and I have left, I do feel as though it is one less stressful thing to have to deal with.

It is definitely the right decision for Martin & I, so now I just need to get on with the rest of my life!!

XxXxX