|(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.