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