I used to say that I have lived with MS most of my adult life. But now, if I add together the 15 years of disease activity before diagnosis with the time since diagnosis, I’ve lived with MS for well over half of my life — not just the adult part. Now that I am in what would commonly be called midlife, however, I’m finding that both me and my disease are sort of, well … stuck.
After Diagnosis, I Quickly Went From Relapsing to Progressive MS
Early in my disease — before diagnosis — I experienced classic come-and-go bouts of varying symptoms. None of them ever stayed much longer than a few weeks or months before fading away. Some I sought medical attention for. Those were either misdiagnosed or offered nothing but conundrum for the doctors I consulted. Then, again in quite classic form, “the big one” came, and there was no denying, no misdiagnosing, no explaining away. That was when I heard the words, “You have multiple sclerosis.” Both the words and the disease grabbed hold of me tightly and didn’t let go. After a number of exacerbations in rapid succession (6 in 18 months), my medical team and I saw a change in how my disease was acting. It was determined that I’d likely had the disease for at least 15 years and was probably in a secondary-progressive phase of the disease (SPMS). There were no medications for SPMS at the time. A long course of what was considered one of the most potent drugs at the time (and one which has some pretty significant side effects) was our treatment of choice — really the only choice. That drug has a lifetime limit, which I stretched but met after about three and a half years.
My Disease Hasn’t Burnt Out, but I Sometimes Feel That Way
So here I am now, in my middle fifties. My disease isn’t aggressively exacerbating, nor have I reached what some clinicians call “burnt-out MS,” though it must be said that I can feel pretty burnt out over the whole thing. I get on with life, but it’s a life dragging around the weight of my collected lesion load. I’m too young to feel the way I do and too old to pretend that I’m not. Now words like “gray matter disease,” black holes, and brain atrophy are the boogeymen that hide themselves in the periphery of my consciousness. They are the fears that haunt the moments between waking and sleep. It is thoughts of these possibilities (cum probabilities) that await me, either around my next bend in the road or over my current horizon.
At Some Point, You No Longer Get Better
I remember well an older man I had the great good privilege of knowing. He had lived with a chronic autoimmune disease for over 50 years himself. Like all of us, he got on with life and expected to get better when things flared or when one illness or another settled in for a short stay. Then, one day, he didn’t get better. It wasn’t his old, chronic companion which caused his ill health, but rather one more nefarious that created knock-on problems due to his longtime condition. While he never spoke of it, I could see a confusion in him as he struggled to understand why his body was no longer answering the bell when called to fight his corner. He didn’t surrender, but it wouldn’t be said that he “battled” either. He was sort of, well … stuck. His was an acute onset of this “not getting better.” I — and many of our readers who have transitioned from relapsing MS to progressive — have lived for many years now not getting better, but slowly getting worse. It’s not natural, but we’ve somehow grown accustomed (though not comfortable) with it. It’s remembering the confusion of my late friend that reminds me that we are experiencing a life lived in advance of our age. One where we’re retired by society too early, relegated to the sidelines too soon, and we’re waiting in between diagnosis, progression, and whatever is next. And sometimes that feels, well … stuck. Wishing you and your family the best of health. Cheers, Trevis
