When social distancing first kicked in I was on a call with my usually globetrottting but newly homebound colleagues who were bemoaning the fact that they were sitting all day. A particularly sensitive one of these lovely humans wrote soon after to check in, worried about how those comments might land on someone that has no choice but to sit most of the day. I gave it some thought and realized that, while I did briefly want to sing “Cry Me a River,” I was primarily interested in the fact that the whole world was getting a taste of what it’s like to have MS.
You cancel plans you were looking forward to because you can’t leave the house.
Sure, there aren’t government decrees insisting that people with MS stay indoors, but, believe me, my body is harsher than any mayor. I don’t leave the house because I can’t. Literally. Due to fatigue. Due to my legs being little bitches. Due to it being 80+ degrees. Due to depression. You get the picture.
You spend hours wondering is this cough due to COVID . . . or is it just a cough?
MS symptoms are a Pupu Plattter of weirdness. Spasticity, gait issues, bladder/bowel problems, and sexual dysfunction are all clearly MS-related for me. Fatigue? MS likely plays a big role but so does not exercising enough and eating poorly. And my short term memory issues that scare the hell out of me? That could be MS or just the fact that I don’t focus well or pay enough attention.
You don’t know how long this will last.
MS, like a diamond, is forever, but its individual symptoms’ lengths vary. I had double vision ten years ago that seriously affected my day-to-day to life and had to stumble through without an end–or two–in sight. It was mercifully finite. Lower back tension and pain that settled in two and a half years ago have been my constant companions ever since. Now that I’ve reached the progressive stage of illness, I have to make peace with the fact that things aren’t going to improve much. Good news: you don’t have this problem.
You feel isolated from friends and family.
I am #blessed that this is not an issue for me. All of my friends and family have been crazy supportive since my first pre-diagnosis tingle. If MS Twitter* is to be believed, this is not the norm.
You find new ways of doing things.
You’re moving your weekly coffee date online, adding ad hoc teacher duties to your routine, and cutting yourself and your family some slack. I’m sitting down (or, UGH, asking for help) to cook dinner, working Pilates into my schedule, and cutting myself some slack. Your new ways of doing things are constantly evolving as your circumstances change and you figure out what works. Mine, too.
You are on a roller coaster of emotions.
Some days what works is lying on the floor crying, And that’s okay, so long as you get up eventually. Some days you are a goddamned rock star with one hand ready to unmute yourself for a meaningful contribution to a Zoom meeting while the other is cutting Shrinky Dinks.** Some days are hopeful. Some days are not. But you (and I) press on because there is far more good in the world than shit, even in these particularly shitty times.
*A thing! Really
**I saw this happen last week.