I’m writing this in bed.
For about two months this summer I felt great. My MS symptoms had receded and it felt absolutely magical. Believe it or not, this actually happened after a session where I earnestly told my therapist that I didn’t want MS anymore. I felt foolish to say that. It’s not like I have a choice. But the next thing I know, it felt like I didn’t, in fact, have MS anymore. Was it the power of the mind? I really wondered.
We talked about it during my next session. It was amazing. The relentless nerve pain was gone. I didn’t experience fatigue anymore. I wasn’t always cold, I actually felt warm to the touch! I was even able to start drinking wine again! And my energy was back. I was active and could just keep going.
Was I imagining these problems before? Or was I ignoring them now, to my possible detriment?
I couldn’t find any evidence that anything was wrong. I was taking care of myself, eating well, exercising a lot, and continuing to sleep long nights. My mom said it must be the medication that’s finally working. I eventually realized that this was the remission part of relapsing-remitting MS.
And two months later I’m in bed writing this. My feet are under the blanket but they are like popsicles. I feel cold everywhere. The burning pain in my leg has returned, as well as the allodynia that’s making my skin extra sensitive, especially to rough clothing.
I feel weak and unsteady. When I walk, it’s hard to describe but the only way that seems close is I feel like an old man. Every work day this week was an exercise in managing energy, resulting in being brain-tired, unable to do more until the next day.
I’ve started lying down at lunch time. It’s mostly to avoid the dizziness, but I sometimes doze off. Today I slept for 90 minutes, only to wake realizing I had work to do.
And now I’m in bed at 8 PM on a Friday night.
So now I must accept that the remission was short-lived and I find myself wondering whether I caused this. Just like I asked what I did to make it all go away, now I can’t help but look for something that changed to make it all come back. Was it something I ate? Did I push myself too hard? Is it work?
In the grand scheme of things, having MS is for me still a recent experience. I was only diagnosed 1 1/2 year ago. Every person experiences MS differently, as I’ve learned listening to the lovely people at my MS support group. I am still learning how MS affects me and what the waves are. It’s my first remission and relapse, after all.
That doesn’t mean I have to like it. Not tonight anyway.