Some of you might know (because they know me in real life) or remember from my German blog, that I suffer from multiple sclerosis (MS). If you speak German you might want to read a post I wrote about it 2,5 years ago. Anyone else might just want to read the wikipedia article, in English (or German) for more information on that disease..
I had the first attack in 1997, but wasn’t diagnosed with MS until January 2000. In the beginning I had attacks with a variety of symptoms about once or twice a year. The last one was in Apri 2006, which was probably the heaviest I had so far. But still not that bad, compared to how fast this disease can progress and how much more severe symptoms and lasting deficiencies I could have had experienced. And I had a 2,5 year break, which was nice as well.
So far every attack symptoms like muscle weakness, loss of sensation in hands/arms or even worse parasthesia (when my arms felt severly sunburnt), resolved after a while. After more than 10 years I only “suffer” from a very mild loss of sensation in my right hand. All in all I’ve been rather lucky. The funny thing is, that I usually am not at all the “glass half full” person, but with this disease I am. Maybe it’s my way of coping :-)
Anyway, earlier this week I realized that my right arm felt a bit heavier than usual, but I thought it was just due to too much work in front of the computer and using the mouse. I also felt some light twitching in my cheek every once in a while, but I put that down to a low level of magnesium or something. I even put down the swooshing in my right ear (like I experienced it during my inner ear infection in January) to that.
During the last few day I obviously was to busy at work and with local politics and a grad school seminar that I didn’t pay much more attention to anything my body might have tried to tell me. But yesterday afternoon I washed my hands and looked at myself in the bathroom mirror and realized I looked strange. To be more exact my mouth looked crooked. I paused for a moment to take a closer look and to examine how exactly that felt like. And I realized my cheek felt weird, a bit like recovering from a local anasthesia at the dentist. And then I did a simple test, which I have to do at the regular neuro check-up: To bare my teeth = grin as wide as I can. Which gave me the final proof that the right side of my face is partially paralysed at the moment. It probably sounds worse than it is, because I can move my muscles and all, it just feels very strange. And the crooked mouth definitely looks strange too.
So, this morning I already sent a mail to my co-worker to call in sick for the next week and to give him a lot of instructions, because there is an important meeting on tuesday, which I organized and was responsible for and now he has to take over. I already cancel some green party assignments and meeting for the next week and I have to do that with a few other things as well.
Tomorrow morning I will spent hours at my neuro practice (emergency without appointment always takes a couple of hours) and I keep my fingers crossed that I can still get the corticosteroid IVs at the practice, like I used to for several years. But I remember that at some check-up the doc told me that he can’t/won’t do that anymore because of health politics/finances. It’s complicated to explain in German and even more so in English and maybe the whole situation has changed again already. There are so many changes in the German health system that I can’t keep track of every one of them.
If he doesn’t offer the IVs at his practice I have to be admitted to the hospital and I hope the hospital still offers to do that out-patient like the used to do it on weekends anyway, even when I got the IVs at my neuro’s practice from Monday – Friday. I usually get IVs for 5 days and it usually helps pretty soon. I’ll keep my fingers crossed.
So my next post probably will either be a “Goodbye for 5 days” or “Whining about coriticosteroids side-effects”. The side-effects something I’m already dreading. I sleep just fine (which is uncommon) but I still am rather agitated and most important lose my ability to taste. Everything I will eat or drink will taste like metal, as soon as the first 200 mg (1000 mg each IV) of corticosteriod have reached my bloodstream. That’s so icky. I should really eat a lot of yummy things today to make up for next week!
I should and will take it slow next week and I’m so happy I just discovered a new TV Show: “Raising the Bar”. I watched the first two episodes last night and really enjoyed it, so I might continue with that this afternoon. And there are still so many books to read. I’m even pretty motivated to read the grad school stuff again. I spent the last two days on a compulsary seminar for the “Sustainable mobility” course and it was really great and reminded me once again why I choose “Enviromental studies” for my postgraduate education. I should really make good use of that motivation especially as I’ll probably won’t do much more during the next week. 10 years of MS attacks and treatment at least taught me to just let go of some things and responsibilities during a attack and recovery time. So I’ll try to not think about work too much but do things I want to to instead. Which includes a lot of rest and TV and reading and letting myself get pampered and pitied from my family. I think I will start with that even today :-)