Saturday, 24 July 2010

£3780 RAISED! YAY!!

So apologies once again for my lack of posts.
You may be aware that we have been doing our fundraising concert - Closer Than Ever and although we did it June 25Th & 26Th, I have been recovering ever since!
It has taken a while to get all the figures sorted out but now that we have, I am so proud to be able to say that we have raised £3780 for the Multiple Sclerosis Society, South Devon Branch and Rowcroft Hospice.
£3780! Wow! I am so grateful to all those involved and to everyone who supported us. We had such an amazing time. It was so well received. The audiences loved it and we had so much fun performing it!
I'm so proud!
I'm proud of what we have achieved for two worthwhile causes. But not only that, I am so proud of what I managed to do. I organised all the front of house "stuff" and I performed in two shows. I was totally exhausted! It took me about two weeks to recover...............or actually am I still recovering??!! But I had done it! And I had enjoyed it! The build up to it had been quite scary. I had begun to doubt whether I would get through the performances, but I had so much support from Martin and all the rest of the cast. It's always scary just before the shows start, we constantly ask ourselves why we do it?! But then the enjoyment of the actual performances, the reaction and encouragement from the audiences and now the fact that I can say that we have raised £3780, made all the stress and the panicking worthwhile!

On top of doing Closer Than Ever, our kitchen floor decided to start sinking! We discovered that one of the pipes up to the hot tap has been leaking and it looks like it has been doing it for a long time, because the floor is about 80% saturated! We are getting it sorted through the insurance company, but it is taking forever! And in the meantime, we have two big wholes in our floor. If it wasn't for the lino, we would have fallen through by now!!

It has been quite a difficult few weeks. Not only did we have Closer Than Ever to concentrate on and the kitchen disaster, but I have been dealing with a few issues with my Multiple Sclerosis too.

I will explain them over the next few posts. Some of the things are not easy to talk about, but I want to, because I want to help anyone else who may be going through the same things as me. I am not looking for any sympathy and I am not doing it so that I can get people to see what I am going through. I hope anyone who reads this knows that. I know how I felt when certain things were suggested to me and I really didn't know where to turn. I hope that by "putting it out there" I can help even just one person.

I had an MRI scan last week, so that my consultant can look at the results and we can discuss where we are with my treatment. I have a follow up appointment booked on September 6Th, so I'll keep you posted!
I am still having my Tysabri infusions. I have had 14 infusions so far. It is a strange feeling, because I am not convinced that I feel any different. I want to be positive about it, I want to feel as though I am going through this for some real benefit. But I don't. I know that some people feel when they are due for their next infusion. As the infusion comes round, they start to deteriorate and know that they are ready for the next one, but I have never had that experience. Does that mean it isn't working, I don't know? How do I know whether it is working, I don't know? Will I ever know whether it is working, I don't know?
I am still having my battles with pain. I am currently on Oxcarbazepine, Targinact, OxyNorm & Ibuprofen for the pain. I am also taking Baclofen for spasms and a couple of other meds for other things! I have an appointment with the pain clinic this week, which I am glad about. I am struggling so much with my hands, especially my right one and of course, I would be right handed!
And the heat hasn't been helping. I appear to struggle in both extremes, when it is very cold or when it is very hot. At the moment, my hands feel as though someone has slashed them with some razors - not that I know what that feels like, but it's what I imagine it would be like!
It makes doing anything really difficult, but of course, I don't stop doing it, otherwise my life would stop. It's like a no win situation.

Anyway, that's enough for now, as my hands are starting to hurt.....a lot! I will be back very soon with more updates though. I will be talking about our new bathroom, my new wheelchair, Peristeen and various appointments..........so watch this blog!

Love & hugs to you all, I hope life is treating you well!
XxXxX