Hello everyone ?
Here I am, starting another blog post with an apology! I’m sorry there has been no update for over 7 weeks. They have actually been quite tough weeks for me … I have been unable to work and have kept my circle very small, in order to cope (just close family and a few close friends).
Looking back, I now realise I have been going through a period of adjustment. My whole life was geared towards going to Russia for HSCT on 16th March and it has taken a while for me to come to terms with this being cancelled, at just a few day’s notice. Not knowing when, or if, I’ll eventually get there, is a difficult position to be in. I’ve had a deterioration in my walking over this time too, increased problems with my left leg, as well as increased joint and muscle pain. All this has been going on while we have all been living in very strange times indeed … no wonder it all became a bit too much.
I reported in my last post that I was soon to start two new treatments … one to hopefully improve fatigue levels and one to hopefully reduce MS disease activity.
I have had no side effects or issues at all with Amantadine and a slight improvement in fatigue levels, so will be continuing to take this daily.
I’ve had a slightly bumpy road beginning Tecfidera, with flushing, burning and rashes most days. Thankfully, this is reducing each as time goes and is now just about manageable.
I returned to work today and am pleased to report that everything went well. I’ve had great support from my head teacher and my team, who have kept in touch during my absence. I have a desk set up at home, with a lovely view and am looking forward to getting on with things.
I’m trying not to think too much about HSCT and whether it will ever feel safe to go ahead. I think it’s going to be quite a while until that decision can be made.