Well, honestly today’s post is going to be a bit of a blow out in itself. Apologies in advance, this is really just a record for myself and because I always said I would be up front and honest about the ups and DOWNS of this whole disease (Ups?).
This past week has been the epitome of a blow out. Starting with a ‘relapse’ starting late last week, getting on the steroids over the weekend and seeing the neurologist this week it has really been an emotional mindf… I have a lot of apologies to pass around to many people. I know these steroids have not treated me well and not made me a nice person, I wish I could change that but they really do take over your mind and body. After coming off them it is even worse, I can;t sleep or stay still, I keep having tremors and almost hallucinations where I am not really asleep not really awake.
I said last time I was on them I would avoid them at all costs, but its funny how the body forgets how bad something is after it’s all said and done. I don;t want to have to use them again, they are not nice. But it is a hard trade-off to make in one’s mind when the neurologist has basically said outright that if I don’t get on steroids during a relapse then I will almost certainly suffer some permanent damage due to the very nature of my MS.
I am at that point again at the moment where I am so ANGRY at this insidious disease and what it is doing to my family and those around me, what it is doing to me. It has made me both very convicted to making this treatment happen but also incredibly frustrated that we even have to go through all this.
I honestly think it is just time to try to have a quiet weekend and sleep the rest of these steroids off and start refreshed again. It probably sounds crazy, but it’ll be a relief to be back at work because even just taking time off knowing that work is slowly piling up is not helping the general frustration.
I am not going to get to in-depth about the fundraising efforts this week except to say that there has some been some incredible support and work forward from all those around me and I am incredibly appreciative even if I haven’t managed to successfully show it very well. I have basically been a Hobbit this week trying to recover and hopefully next week we can get back onto the more full-time work getting this all moving.
I know I’ve been in an emotional state because so many amazing people have done so many amazing things and they keep bringing tears to my eyes…. Big girl right!
All you supporters know who you are, close and far. Please know we love you all and I wish I had a better way to say it.
Thank You All!