disabled life

Anecdotal evidence first iteration: life in an immunocompromised status

I have always been ridiculously healthy. I have always been the person that never gets sick. I have always been the person who is never absent from work.

And then I was put on a DMT (disease modifying therapy) that kicks my immune system in the teeth and tells it to stay down, back down, turn off, quit doing the thing.

People say this means more sick more often and for longer.

I wondered what this meant.

Since I started my therapy in the midst of COVID, for a while nothing happened. We were all masking. No one was getting sick. Not even immunocompromised me.

Then this fall, it happened. My students coming to school sick (just like the old days), unmasked and coughing all over me. Strep going around like wildfire. Flu everywhere. Pink eye, if you can believe it, and I cannot remember the last time a bunch of my learners got pink eye. Children bleary and snotty and barky with chest deep coughs.

I got sick with not COVID, not flu, not strep. (I was tested for those.) My partner got sick as well.

Here’s the difference:

He felt run down and congested for three days.

I was sick for eleven days. For two of those days I did nothing but lay down and try to sleep, incapable of anything useful. For four of them I felt really awful, worse than I can remember feeling in ages and ages. The recovery was sloooooow.

That’s the difference between an immune system that works and one that doesn’t. And now I know.

(I still did not miss work, by the way. The two corpse days were over the weekend).

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The measuring tool is inadequate to the task

I find it quizzical when my neurologist queries me about my cognition. How am I supposed to use my broken brain to check whether my brain is working? Shouldn’t you tell me? Am I talking in full sentences?

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