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

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!

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!

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!

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!!

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!

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?

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

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 :(

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!

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