I have officially reached the 6 months on Gilenya point. It's gone quick. If asked, I would say it doesn't feel like I've been on it for half that time, but I haven't, so I won't.
I got through February falling over only 3 times *pats self on the back*, and one of the times was when I'd had one or two or six drinks too many. The good thing about that was the alcohol numbed the pain. As it didn't hurt, should I omit it? If I do, it won't be a problem with those that disagree with me because I would've deleted this part of the paragraph and you won't have even known I debated with myself on the subject. If I have left it in, you'll wonder if I'm going insane by arguing with myself. Thinking about it, I would also leave out the one where I had a urinary tract infection. Those little buggars really kick my symptoms off and mess up my legs and because I self catheterise, I am prone to them. I do keep myself clean, but some of the pubs I frequent, get a zero out of ten when it comes to toilet hygiene. I also found out that the antibiotics that I have been taking in a low dose as prophylaxis (look it up) for nearly two years will be having no effect anymore and probably haven't been for the last year. Prophylaxis means prevention, by the way.
I was reading a Multiple Sclerosis blog at the weekend. This blog is done by my consultant and his team. One entry in particular caught my eye. It is a progression calculator of sorts. It is a graph showing the progression rates of others. I compared the length of time I've had this illness to my Expanded Disability Status Scale (EDSS) and I can confirm that my MS has progressed faster than 95% of the people on the scale. I was never in the top five percent in any of my subjects at school, so this is a real accolade here. NOTE TO READER: I hope you can detect the massive sarcasm in this part of the blog?
To continue in the same sarcastic vein, it gives me joy to inform you that in the 7 years since diagnosis, I have deteriorated to EDSS7 and if it continues on this present course, I'll be at the EDSS stage 9 in 2 years time - where I will be bedridden. And to think some people with MS's biggest fear is spending their latter years in a wheelchair. I'll be 40 in 2 years.
None of the above will include the impact new drugs will have on us MSers over the next few years, and Gilenya is a new drug, so lets hope it changes the course that I am on. I really need it to. It's more or less a life or death situation I am in now.
If anyone is interested to see how they are doing in comparison to approximately 28,000 North American people with MS:
http://multiple-sclerosis-research.blogspot.co.uk/2013/03/predicting-ms-explained.html?m=1
Blogger doesn't create hyperlinks, so you will have to copy and paste the URL into your browser bar. I do, however, suggest you DON'T look. I genuinely wished I hadn't. Whatever happened to my old mantra that 'ignorance is bliss'?
Happy weekend.
Dan
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