Finally Managed: an Update

Recall the last very bad flu you came down with. Add a head cold, stomach bug, and brain swelling to the mix. Now imagine that week you were sick went on instead for 156 weeks with no end in sight. What if someone, after all that time, said you could begin to get better soon. But the arduous steps you had to take to get better only made you much, much worse. So now the bare simplest effort—even just trying to type up a little update for friends and family—within seconds made your brain burn horribly like an overworked muscle and sent your body into an agony of symptoms that took hours or days to calm.

So, that’s basically how I’m doing…

The doctor says the unexpected exertion of relocating to a new apartment has set my frail body back excessively, and I may just need more time for the first course of medication in the months-long treatment protocol to work. This tracks, since attending a friend’s wedding at the end of last summer laid me out for 6 weeks, even though I spent most of the trip resting in bed and made only a brief appearance at the reception. In contrast to that excursion, our move was a stress-filled, grueling logistical nightmare involving 4 people, 6 separate locations, a forced parting with most of our belongings, and a rigorous cleaning process to decontaminate what remained—and it was so much the worse given the state of my health going in (and coming out).

There is also some evidence in my blood work that I might have an “occult” (hidden) infection, so we will need to track that down before I can improve. Apparently, this is actually a fairly common scenario with CIRS, a fact that does not provide much comfort, as the end result is nevertheless a longer, more unpredictable recovery time. And there is also the somewhat devastating realization that we don’t actually have every part of the answer after all to the unsettling question of what is fully wrong with me.

I’ve endured 3 years of all this, the last four months of which have been various iterations of straight up unmitigated hell, all much more extreme than anything I’ve gone through to date. I do know things could always be worse, and they unhappily are for many people in this world. I know for good and certain there is plenty in my life to be grateful for, and I genuinely am. But I also know the wheels are finally starting to come off this ride. I’m losing my grip. It is hard to cope.

You guys, this is pretty awful…