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

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!

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

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!

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!

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!

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!!

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??

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