The ever-present rediscovery of self
Hello friends,
Sorry I haven't written for a couple of weeks. I oscillated between huge bursts of productivity and seemingly endless pits of exhaustion. The productivity felt so good that I pushed myself too hard. My body responded by telling me to sit the fuck down for a bit.
When I was first diagnosed with MS, I tried several different pharmaceutical stimulants to fight my fatigue. The first gave me insomnia. Not helpful. The second made me feel like I'd been shot out of a canon. My whole body jittered, and my heart pounded a million miles an hour. Too helpful. The third didn't do much of anything at first, but after a few weeks, I realized how tense I was. My jaw was perpetually locked up, and I felt like I was running on pure anxiety. It didn't help that, at that time, the pandemic was raging through Italy and emerging in the United States.
At that point, I'd been using medical marijuana mainly for pain management. But a couple of weeks ago, I tried a new strain that gave me an energy boost without a caffeine overdose feeling. The first day I used it, I worked in the garden for hours. I pruned shrubs that had become trees and rediscovered earth buried beneath decomposing leaves. My body was covered in dirt and sweat and scratches, but my mind was clear. I hadn't had such a fulfilling day since before my diagnosis.
The next day, though, my body was not happy. I slept till late morning, incapable of opening my eyes. My leg throbbed. I spent most of my day lying on the couch feeling sorry for myself. Is it really so much to ask for two good days in a row?
I spent the next few days alternatively getting shit done or wrapped up in a blanket watching Netflix. But as time went on, I learned to balance what I felt like I could do with what I was actually capable of doing. Previously, I took full advantage of every good day because I didn't know when the next one would come. But with this new strain, my trusty Blue Zkittles, good days showed up more often. I didn't have to push myself so hard. Now I'm figuring out ways to do just enough, and I'm learning to be ok with that.
It's difficult, almost painful at times, to stop working when I feel like soldiering on. When I stop, though, I'm more aware of my leg throbbing and my toes pulsing with neuropathic fire. Other times, cog fog will take over my brain, forcing a shutdown. Even though my body feels fine, my brain feels like mush. Both experiences are frustrating but in distinct ways. They require different approaches. But I'm always observing myself, constantly relearning what my body needs. That symptom, the ever-present rediscovery of self, isn't talked about enough. You won't find it on a list of ways MS changes you. Yet it's one of the tallest hurdles to overcome. Sometimes you fly over with ease. Other times you slam your shin into the bar and fall flat on your face. Regardless of the outcome, the hurdle resets each day, and you must jump it all over again.
Metaphors aside, living with MS is fucking hard. Living with depression and anxiety and OCD is fucking hard. Living in the time of COVID is fucking hard. But it's still living. It's fucking hard, but it's fucking beautiful too. Here in Florida, the weather has shifted to full spring mode. Pollen blankets the world in soft yellow, but the sun and the breeze are invigorating. So I'm going to sit outside, smoke a cigar, and watch NASCAR. I hope your day is equally as leisurely.
See you next week,
Yardena