Over the past five months I’ve been schooled on a number of (mostly) ALS-related health issues. Here I share what I’ve experienced and what I’ve learned, for the benefit of others living with ALS who come across this blog. Spoiler alert — this story has a lot of more-or-less happy endings.
Fatigue is very common with ALS, as our muscles are working a lot harder in their weakened state. Sometime in late June or early July, I started experiencing deep, chronic fatigue. I was bone tired, I needed a nap a day, and never felt rested. This was a big drop off from my normal energy levels. And this went on all the way into September. At first we thought it was COVID-19, but I tested negative twice. Then I thought it’s a new phase of ALS, my “new normal,” which was very discouraging. Others asked if I was depressed – in the midst of COVID everyone was feeling blue, so maybe the tiredness was a symptom of mild depression. I also wondered if it was in part caused by the stress I’d gone through in June, when I got caught in the middle of a nasty spat in the ALS community over a house bill (HR7071) proposing to fund expanded access to experimental therapies. Or maybe it was a combination of all of those.
Whatever the case, the fatigue was debilitating. Psychologically it was the worst I’d felt since I first got the diagnosis.
But it turned out to be (we now think) something else entirely – a low grade blood infection that became a full-blown medical emergency in late September. Once the blood infection was cleared up, my energy levels returned to normal and the fatigue problem, thankfully, was gone. The lesson for me was not to assume every health issue I experience is somehow linked to ALS progression.