Well I did it, I went through with the Botox for my bladder, I’m very glad I didn’t realise what it involved beforehand or I’m not sure I would have been going! That was at the time, now I’m glad I did it, I don’t know it has made a difference yet or not it can take up to two weeks so will keep you updated.
I know I haven’t posted on the blog as often but I am so very tired a lot of the time now and fall asleep at the drop of a hat.
Yesterday the social worker and O.T were out and although we have a hoist in the room we can’t use it because of the kind of bed we have, we spoke about a hospital bed, something I don’t really want unless I can get a double ☺ but that’s not an option. So it would mean that at 39 I would be sleeping in a single bed next to my husband in his bed, not the best but Andy said it’s what’s best for me and he’s pretty sure he could crawl in beside me ☺
We are also trying to rush respite up a little so that we can look at pain relief etc. The same day I saw my G.P who is wonderful and listens to me as I cry and say actually sometimes I’ve had enough, I find it extremely hard when I see on the support forums and yet another MSA friend has died, its very odd because even though I’ve never met these people I still feel the grieving process for them and their families, it also brings it much closer to home that MSA is never very far away.
I stay as positive as I can and I just had the most wonderful weekend away with Andy’s parents, it was lovely, so relaxing and laid back! Thank you so much to them, for making it so wonderful, I saw the Blackpool illuminations for the very first time! Another tick on my list!
I can’t deny that MSA is sometimes getting the better of me, I sleep loads, can’t concentrate for any length of time, Andy just came in the room and I’ve forgotten what I was doing, that’s how easy it is!
My speech and swallow aren’t great and although my speech still kind of comes and goes it goes more than it comes now if that makes sense. We have a great support network around us, wonderful carers coming in who I see as good friends, people I can trust if I need a cry or just a moan!
An amazing family that I couldn’t live without, in fact my life would be pretty amazing if those three little letters that cause so much damage would just go away!
Andy and Rhanna are so strong and stay determined that we do as much as we can! Rhanna’s friend is organising an event and I hope it’s a huge success for her, for MSA.
I will get back to writing the blog more regularly and I’m so sorry for the lack of input from me, I promise no one is ever very far from my thoughts, be it Torsten, Carole, Kym, Lynda, sharon and everyone else, I continue to send you all my love and positive thoughts!!!!
Lots of love Sam xxxx