I just recently passed the three-month mark of feeling “weird” from this Multiple Sclerosis relapse: my first in exactly ten years.
It’s interesting to look back now and retrace the myriad ways this annoying little f#@%er wormed it’s way into my life. It started in mid-January. At first, I wasn’t quite sure it was even much to worry about. It was only a bother during my commute. When I walked between the Transbay Bus Terminal and my local stop in downtown San Francisco – about half a mile – I lost sensation in my feet.
I mean, no biggie for someone with MS.
But after a week or so of this “no biggie,” I started losing sensation from the knees down. My “high-water mark” (as I’ve coined it in the past) was rising.
Then one day I ran several blocks to catch the bus and, when I finally stopped, I had no sensation in my legs at all. I could barely stand. I stumbled onto the bus and dropped down in the seat next to Trent. I started to cry. Something was definitely wrong.
Over the course of that bus ride home, my legs gradually started to “wake up” but, as they did, I was in terrible pain. When we reached home in Oakland, 40 minutes later, I had to limp off the bus and hobble home the last couple blocks on Trent’s arm.
The next day, I took BART to Adobe’s employee shuttle, scared to take a step. I stayed pinned to my desk all day.
My walking got worse after that. Every now and then I tested my limits, but it seemed I’d reached some sort of plateau: 500 feet or so, and I could go no further.
So I changed my commute pattern. I stopped walking more than a couple blocks at a time. I took the bus to the train to the shuttle every day. Or I carpooled. I did my absolute least favorite thing:
I slowed down.
I pushed myself on our February European vacation. I hurt every day, and I gave Trent’s arm a workout, but he never complained.
I slept. A lot.
I refused to go to the hospital. I refused steroid therapy. My doctor, surprisingly, supported my decision, on the condition that I continued to be mindful and rest.
And I did. I took it seriously.
And then I started to feel a little better… Maybe? Or just different. By March it seemed my walking had started to improve. But then other things started to go wrong… Severe nerve pain in my left leg and foot; a feeling of sudden weakness or “absence” in the leg. Then entirely new symptoms appeared – scary things I’d never experienced before.
Difficulty breathing and swallowing.
Loss of vision in my right eye.
They all improved when I rested, and got worse when I was tired or overworked (two things I almost always am, in perpetuity).
A set of MRIs came back bad, not surprisingly. Significant new lesion activity on the brain, and some on the spine. Active disease progression. I got a little depressed, but more annoyed at the setback and the copious decisions to make around changing medications.
I do not like setbacks.
At the doctor’s command, I stopped my injections to clear my system of immunosuppressants and get ready to take a stronger (more toxic) drug.
I’m still not on the new drug. Sometimes I wake up in the morning and think about what’s happening up there in my brain; think about the scar tissue just piling up, and piling up. All the nerve fibers fraying out, the lights flickering and going out forever…
But today, I feel better.
It’s almost May now. A few times in the last few weeks I’ve thought I might feel better, and I tested my limits, and I paid the price. But today, I know I feel better.
I made it through the whole day in just about as “normal” a state as I’ve been in since my diagnosis (what seems like a lifetime ago now). And – I can see out of my right eye. Finally! That’s been the most troublesome issue plaguing me these last couple weeks, and the one that almost had the power to drag me down.
I looked at my computer screen all day without wanting to chuck it across the office.
I’m not in any pain today. No weirdness, no wonkiness… Nothing left to do but go home and relax.
I did it. I made it to and through one day of “normal.”
I don’t know that they’re all going to be like this yet, but I see the light at the end of this tunnel.
I’m going toward it now, to whatever happens next.