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| (Photo credit: circulating) |
But what if you already understood that your prospects were bleak? Would you want to know precisely how bleak, or would that serve no useful purpose? Unfortunately, I'm not given a choice, because my crystal ball shows up once or twice a year, and when it does I am powerless to look away.
I don't get very ill, very often. But once or twice a year I'll come down with a fever that usually lasts 24 to 48 hours, and it knocks the crap out of me. That’s because when my body temperature rises my MS symptoms are exacerbated.
I've learned that my condition when I have a fever foreshadows my condition at normal body temperature after another six months or a year of MS progression. Frankly, I'd rather not know. The news is never good.
In fact, I was visited upon this past week by my crystal ball, due to a chest cold. I learned just how much more difficult simple tasks like eating, dressing, and transferring from my wheelchair will be in the coming months. It was a fairly unsettling preview.
I hesitate to burden you with this somewhat gloomy post, but I think it's important to remind everyone just what a crappy disease MS is. If you've read this blog for very long, you know that I'm a relatively upbeat and well-adjusted guy. I think I'm handling my challenges well. So don't worry, none of that has changed. I'm just being straight with you.
You may have heard prominent neurologists or pharmaceutical reps say that “it’s a great time to have MS,” or that “MS is a highly treatable disease.” This may be the case for some people with MS, but it isn't the case for those of us with advanced, progressive MS (except for better wheelchairs and easier internet navigation tools). We have no treatment. We have no cure. MS just sucks more and more every passing year. We cannot, as a patient population or as a society, be satisfied with the pace of medical research on MS.
A strange thing happened when my fever retreated last week. I didn’t so much lament my uncertain future as I celebrated my return to my current “normal,” which I have a renewed appreciation for.
I’m not exactly sure how we’ll get through each day a year from now, but I’m confident we’ll figure something out.
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You like me are getting to that point where you wake every morning & have to ask your body, "What parts work today?" At least your crystal ball gives you time enough to figure out how to transfer without using legs. Keep on living the good life!
ReplyDeleteKK
I, like you, don't always want to see the future -- too scary. But the thoughts do creep in and the questioning begins, "How can I handle all this?" Reading your blog -- which is upbeat and positive -- shows me that we learn to adjust to each new situation, and somehow we find a way to go on. Thanks, Mitch -- glad you're feeling better.
ReplyDeletePeace,
Muff
I think all of your posts are so valuable. If I progress to a similar condition your posts will help me deal with it better, even if just a little. So thank you.
ReplyDeleteI have RRMS but I was just thinking yesterday how I can see my overall leg strength reducing slowly over the years before my diagnosis. Who knows if that will continue?
I'm feeling pretty good right now and even though I think of myself as the person who wants to know, I can feel myself not wanting to think about it. There's a fine line between appreciation of today and denial of the future.
Actually Mitch, I would like to see the future. That way I would be sure to prepare properly for it, and also do some of the things that I won't be able to do later. My husband likes to live with his head in the sand, but I don't. Knowledge is power - and, in this case, motivation.
ReplyDeleteI'm glad you returned to your current normal. That's always nice.
It's not all bad...10 steps back and 1 step forward. Last night, for the first time in weeks I was able to empty my bladder in the middle of the night without needing to wake Kim to help me get out of or back into bed. I had begun to think that would never happen again. 1 step forward once in a while is nice.
ReplyDelete