Finding new joy in life
Things change. We must change with them.
Hello friends,
Thank you for being patient with me as I slog along under this fatigue. Before MS, I didn't know I could be this tired. Once, as a teenager, I stayed up for nearly 36 hours. I worked as a summer camp counselor, and we did an annual fundraiser for the American Heart Association, a 24-hour swimathon. The campers participated during the day, but the counselors stayed overnight to complete the 24 hours. By the end of the following camp day, my eyes refused to stay open. I kept nodding off while my co-counselors did all the work. When I got home that afternoon, I collapsed into my bed and didn't wake up until the next morning. Even then, I was not as exhausted as I am now.
MS fatigue is like a 50-pound blanket draped over me at all times. Every activity tires me. Sometimes I sit down to brush my teeth because standing for that long is too much. I do the dishes in small chunks because the hot water makes me overheat before I'm done. I often sit under a fan for a few minutes to cool off and catch my breath afterward.
It's not just physical, either. Worse fatigue means worse cognitive fog (or cog fog, as we like to call it). My brain finds it difficult to complete even simple tasks. Sometimes I don't eat, even when I'm hungry, because I can't decide what to eat. It's such a basic function, but my neurons struggle with the choice. Occasionally I can't even decide what to do at any given moment, and I end up staring into space for a while.
The fatigue isn't always this bad, but it's a handful right now. I finally started my new meds, though. I injected my first dose the other day, and so far, no side effects! No site reactions either, which is a relief. I don't mind jabbing myself, but I can't deal with itchy, red welts that burn and swell to the size of a baseball for half an hour after each injection—I'm looking at you, Copaxone.
I hope this new medication, Kesimpta, will get rid of the Crap Gap that makes my fatigue worse. My neurologist has had a few patients switch for the same reason, and she said they all saw improvements.
Since my diagnosis in 2018, "quality of life" has become a common phrase in my repertoire. I spend more time outdoors, sometimes just sitting and enjoying nature. I care for my plants and my fish. I keep my house warm and inviting. My brain turned to swiss cheese, and my body slowed down, so I slowed my life down with it. And honestly? I'm more content than I've been in a long time.
My summer camp did those swimathons for the American Heart Association because several campers (who later became counselors, like me) had heart problems. One of them, my friend Shara, had a heart transplant as a child. Her new heart lasted about 15 years, which is typical for pediatric heart transplants. When she was 18 or 19, she got a new heart. We went to the beach that summer with our campers, and she showed off her new scar to everyone. A few months later, she was back in the hospital, her body rejecting her new heart. She never left the hospital.
I was 16 when we buried Shara. I had my first panic attack at her funeral. My arms tingled, my vision receded, and I sat down in the cemetery grass to find my breath. At Jewish funerals, it's common for mourners to pour a shovelful of earth into the grave. We scoop up the dirt with the shovel upside down. Burying a loved one isn't meant to be easy. I'll never forget the sound of grave dirt thudding onto the hollow pine box.
When I reached my own 19th birthday, I couldn't help but think of Shara. Now, at 30, I realize how truly young she was, how young we both were. I may be chronically ill, but I still have so much to live for. My life is different than it used to be, but it's no less beautiful.
That's it for this week, but keep an eye out next week for the first installment of the Sad Poets Society. The first one will be available to everyone, but after that, it's going behind the paywall. I'll have more info on that during the week.
Until then,
Yardena
I loved this share.