Wow it's gone cold again! I'm actually sat here with a hot water bottle, my feet & hands are freezing!On the whole, this week hasn't been too bad for me, although, I did struggle with fatigue towards the end of the week. I think things decided to catch up with me!
So Wednesday was finally my long awaited appointment at the pain clinic. I was a little apprehensive, not only to see what they had to say, but considering I have travelled to London on two occasions, to see a pain specialist up there, I just wondered what a clinic in Ashburton was going to be able to come up with!
Well the Doctor I saw, was lovely and put us at ease straight away. We talked through my history and my symptoms. We also went through the medications I am on and have tried. He then went on to explain the different groups of pain medication and for which type of pain they are usually used. I found that quite helpful. He asked me whether I felt that the Gabapentin (Neurontin) I am on, is doing any good. I said, that it is so hard to say. I don't know whether it is helping as I don't get an immediate relief when I take the meds. I have also been on it for quite some time & so that is also another factor. So we have decided that I am going to slowly reduce my Gabapentin intake, keeping a pain diary to be able to look at how it has affected me. If I think that it has made a difference, then I can increase my intake again and continue with it, but if not then I will continue to reduce it until I have stopped it completely. The Doctor said that this is the most effective way of finding out whether it's helping or not and whatever the outcome, it will mean that we have some useful information to work with.
He has also suggested another medication to start - I can't remember the name, but he will be sending me a copy of his letter! He wants me to try the Gabapentin experiment for about three weeks, after which I am to contact my GP to start this new drug. It is in the same group as the Tramadol that I am currently taking, but it is stronger.He has said that we will go with these changes to start with and he will see me again in a couple of months, at which point we will review things again.
Martin & I came away from the appointment, feeling really quite positive. Not that there are any immediate cures or remedies, because we knew there wouldn't be, but it is really refreshing to have a Doctor talking to me about a plan & options that will be open and available to me. I have had the door closed on me for quite some time now and that is not putting my MS nurse or my consultant down, but they have come to the end of their knowledge for me. And by their own admission, they are as frustrated as I am because they don't know what else to suggest.All in all we feel quite hopeful that this will be a positive move and one where I might start to get some relief from my pain!
Some more exciting news. I have had an appointment made from social services, they are coming round to the house on Monday, to do an assessment, to do with our bathroom. My occupational therapist put in a referral, for us to have our bath taken out and the bathroom made into a wet room/have a shower put in. It would make my life so much easier, because at the moment, I can't have a shower without Martin being there. Our shower is over our bath, so it means, for me to get in it, I have to lift my legs over the side and that is not easy for me to do on my own. I just hope that social services can see that I have an issue with it!
Martin & I have been enjoying watching the Winter Olympics over the past week and I have to just say that Amy Williams performance on the skeleton was fantastic! We are also enjoying the Curling competition and really hope that both the men's and women's GB teams can progress through the round robin! It's funny how we all become experts for two weeks!
I hope it's not too cold where you all are and if it is then keep wrapped up warm!
XxXxX
A new car and we have been using it!!
I am glad to say, that we feel really pleased with our new car. It has a lot of space for a little car! We have put the wheelchair in the boot and it fits with no problem, we haven't lost any space from the back seats, which is good. And I am pleased to say that we are getting good MPG from it too. It is a pleasant change from the PT!!
We enjoyed a lovely day out in Poole, last weekend. We took a friend and went to see the Bournemouth Symphony Orchestra. They were playing a concert of John Williams film music. Superman, ET, Saving Private Ryan, Jaws and Star Wars, were just a few of the pieces that were on the program! It was a truly wonderful concert and a pleasure to watch such talented musicians.
I took the wheelchair with us, as I knew we would probably be walking about a bit. But, I was a little frustrated with myself when we got home, because I didn't use the chair.
I kept telling myself (and Martin), that I would be fine and could manage without the chair.
Of course I did manage, but I also suffered a bit too. I became very tired, my legs were really painful & weak. I didn't use it because I was sure I could manage, I let my pride get the better of me. If I had used it, I know I wouldn't have been so tired, I wouldn't have slept all the way home & therefore I could have helped Martin out and driven some of the way home!
I need to get over my fear of using the chair. It's not so much a fear, actually, it's just that I feel that I am being lazy if I use it. Because I can still walk, albeit with crutches, I believe that I should still walk, rather than use a chair. Even though I know that it would help me and that it would help conserve my energy etc!
Oh well, I know I am close to using it one day!!
Tysabri Number 9
I had my ninth infusion, last Tuesday. It took a couple of attempts to get the needle in my portacath, but I have realised that I am the only one that has a portacath, so the nurses don't have anyone to practice on in between me coming in each time for my infusion.
The infusion itself went through OK, but it knocked me off my feet a bit this time. I fell asleep on the way home and then crashed out when I got there. I was shattered for about two days after the infusion, this time. It was a bit frustrating!
I haven't noticed an improvement after I have the infusion or a deterioration when I am due for the infusion. I know that some people have noticed that they know when they are due for it, because they feel that things are worse. I haven't experienced this yet!
But I am still giving it time!
I have finally got my pain clinic appointment this Wednesday!
I am not sure what they will be able to do for me, but it will be good to talk to someone else about the pain and the fact that it is constant and driving me crazy.
Martin will be coming with me, which I always think is helpful. It is good for someone else to hear what is being said, because I don't always take it all in.
I am wondering whether they will want to take me off any of the stuff I am on already. My MS nurse has suggested that it may be that the combination that I'm on isn't working for me.
Well, I'll find out on Wednesday!
Our charity concert is coming along well. We have started the rehearsals, although only once a week or so for now. But it is fairly complicated music, so we want to give people a chance to be able to learn it without panicking!
It is quite strange because half of us have performed it before, when we did it back in 2004. But it is interesting that there are parts that haven't stayed in the memory. But there are other bits that we remember without having to look at the music!
It is so good to be getting our teeth into such a great range of songs again. And those that haven't done it before are enjoying learning it too.
The things to concentrate on over the coming few months, will be getting the posters and programmes sorted out and also sorting out the publicity etc. It's quite a big undertaking, but we have done it twice before, so I know we can do it again!
I really hope that we can sell lots of tickets and raise lots of money for the local MS branch.
I know it sounds silly but I have a bit of a dream. In Exeter, there is an MS centre, where people can go and get treatments, like massage and reflexology etc. They can also just meet and have a chat or a coffee. There are rooms with information, so that people can research anything to do with MS. There is also a Hyperbaric Oxygen chamber.
It is great, but it is in Exeter, which for me is about 25 minutes away, but for people in Torbay it is even further away.
I would love to be able to find the funds and a suitable building for our branch to be able to set something like that up locally.
I'm not talking on quite the same scale as that, so not the Oxygen chamber or even anywhere with lots of rooms. But somewhere, where there can be treatments given, that wouldn't cost a fortune for the members, somewhere, where the physio classes can take place and just a meeting place for people.
I have had a couple of massages in the past and I find that they are quite beneficial. But I go to someone locally and that costs about £25 a time. I can't afford to have them done very often, which I think is a shame, because it does help. So to have somewhere, where this could be affordable for people suffering with MS and also for their family and carers, I think would be really special.
I think about it and I think that it will never happen, but then other people achieve these things, so why shouldn't I be able to do it?
You never know.............one day!!
XxXxX
