Monday, 15 February 2010

A Dream!

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

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

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

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

You never day!!

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