How Am I?: In Which I Return to Writing

My MS turned 20 years old in April. Or my awareness of it did, at least. Who knows how long it was simmering beneath the surface, demurely nibbling at my myelin until I finally noticed? I certainly don’t. And neither do the doctors.

If there’s one thing I have learned in the past 20 years, it is that I don’t know so many things. I welcome people asking how I am doing, but I struggle to answer that simple query. 

“Still walking most of the time!” is a frequent go-to and one I deliver cheerfully even as I internally mutter “short distances… with a rollator… if it’s not too hot.”  

“No new lesions!” is another good one. So encouraging, no? It’s been years since there have been new lesions, and their absence is indeed cause for celebration. Still, “no new lesions” lands differently 20 years in when you know your lesion burden (burden!) is, well, burdensome and that you entered the slow decline of smoldering MS years ago. 

I am happy to have reached a stage of life where my mood is not dependent on the numbers on my scale, but I long for the ease of a daily ritual that tells me “here’s how you’re progressing.”

How do I measure how I’m doing now? Step count? Fall count? Tear count?

I am mostly doing okay-ish. My falls are fairly few and nearly always result from carelessness. I recently forgot that shirt removal must be done from a seated position, which led to a tangle, a head bonk, and me collapsed on the floor in the epitome of bad (half) naked. I recently bought something called a bed cane, which is advertised with words like “for elderly”. So that feels amazing. Ego hits aside, it has eased bed entry and exit, which is more win than loss.

I still don’t cook much thanks to stamina issues, as well as heat sensitivity. Occasionally I surprise myself and could likely do that more if I lowered my standards.  

I saw a dear but rarely-seen friend a few weeks ago who said, “I think you look fantastic! No different from last year.” That felt amazing.

Now that temperatures have reached 80+, I feel all 20 of my MS years as I beg my knees to bend, my feet to leave the pavement for the walk from the backdoor to the car. I whisper “This is not forever” to myself, collapsed on my bed clutching a sippy cup of ice water. I then prove it by walking slowly, successfully the forty steps to the couch to watch Below Deck.

My coach and I talked about giving myself the space to be in whatever state this is [gestures awkwardly at self], and we agreed I have three priorities for the summer: rest, rebuilding, and whatever I’ve already committed to. “And a little bit of writing!” I added at the last moment. So here I am, ready to hit publish, end my day at 4pm, and enjoy some reality tv with regret. I can rebuild tomorrow.

P.S. It’s World MS Day! Seemed like a good excuse to write again. It’s also a good excuse to mention that my Walk MS fundraising continues here.

P.P.S. I have a cat now. Her name is Petey.