It's time for another long haul covid update at ca 11 months. (For my "covid diaries," see here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here, here; here; here; here; and here). It's pretty clear now that my situation has deteriorated since the late Summer, but before I get to that first some of the decent news:
1. The ENT (ear nose throat) specialist came up with a plausible plan to tackle the after-after-effects of a swimmer's ear (which was interfering with my sleep patterns), which in combination with chronic sinusitis and a malfunctioning Eustachian tube was causing irritation when I am horizontal. I think the new meds are working. But it's not gone yet.
2. Since the break, I have now taught two sessions of my course without collapsing half way and feeling almost normal in doing so. (We'll see what the students say on the evals later.) It's really joyous to be in the class-room.
3. At the suggestion of my better half, after a week of no painkillers at all, I now (largely) only take pain-killers when the headaches prevent me from sleeping. Otherwise I rest in bed. The good news is that the permanent headache and nausea have ended. (Her hypothesis was that I was suffering side effects from the painkillers.) The bad news is I do spend a lot of time in bed feeling crappy.
4. On the not too crappy days, I walk about 8km/day. (Some of you may have noticed my new hobby: pictures that make me peaceful.)
Okay, that exhaust the glass is half full part. Here's a lot of the mediocre news:
A. The morning after the seminar, I start having a headache in my sleep. I woke up with throbbing headache and nauseau. And that headache can last up to 36-48 hrs. (That is now!)
B. All multiperson social interactions trigger what I call head fatigue and headaches. (One on one, especially casual conversation is not so bad.) Zoom is even worse.
C. I avoid cycling because it too gives me a weird head fatigue and headache. (Most of my walks I do with noise canceling headphones on--but wouldn't dare to bike like that.)
D. My occupational physician has decided that I am in no position to increase my workload next semester. So, I will remain half-time. Even though I agree, this depresses me greatly because the undergrad teaching brings the best out in me. (We're now deciding whether I should teach the large tried and tested lecture course on history of political theory or a new course on feminist theory.)
E. I have been referred to an ergo-therapist/occupational therapist. Unfortunately, they have long wait lists, but it looks like I can start in a few weeks with someone near my home.
F. I had such an unpleasant interaction with my (Dutch) neurologist, that I wrote a pointed email the next day which led to a new appointment later in the month. Short version: intake was done by a medical student. By the time the neurologist showed up, I has such a headache and fatigue that all i wanted was the meeting to end. He thought all my symptoms were due to post-viral effects (so no stroke or tumor--good news!) But what I found astonishing was that the physician claimed (a) I was clearly improving, and (b) that I would make full recovery. The next morning I wrote the email from my work address (and signed 'prof') and name-dropped my better half and a comment that most patient complaints are due to miscommunication. I got a response within 30 seconds, and a new appointment in a few weeks.:)
G. As a comparison, I am supposed to see a neurologist in February in London in the NHS. For various reasons that's bad timing. Trying to change that meeting earlier in the week involved four phone calls--several transfers, and a voice message that may or may not get a response!
H. Meanwhile thanks to sleuthing of my better half, I am now exploring experimental medical trajectories, especially low dose naltrexone in a private clinic in London. My Dutch and UK GPs will give me their view on this treatment this week. The Long Haul clinic in London have promised me feedback next week--I am especially interested in what they have to to say. My occupational physician thinks it worth a try.
I. Because of the class prep/grading, my serious headaches and the effort to obtain more specialized medical care are so exhausting, I am not doing much of any academic writing or even refereeing. (I try to do a few blogs each week, so as not to get too down.) But the headaches make it hard to find space/time for it.
J. Starting in January my work status will change subtly because there will be an effort to start preparing a possible social security file. (After two years of illness I would get kicked into social security system.) This means that the university has to make a good faith effort to create 'fitting' work for me. That will be interesting, but more about that next year.
K. On Sunday, my sister took me to the unveiling of the stone of (recall) Arthur Wijnschenk. I was sick after. But it felt important to show support for his sister and her family. More selfishly, I wanted a moment to mark my own loss. I was sad I could barely interact with a lot of old friends, but I made some small talk in the edges of the event. My sister found a bench under a tree near the grave, so I could stay for the whole ceremony.
That wraps it up. It's fascinating to see physicians avoid giving you care because they know they can't help you (leaving aside the subtle pressures of rationing operating in the background). Because covid started with lung problems, a lot of the chronic care is oriented toward lungs/breathing, and this generates odd passive aggressiveness among rehab facilities--the emails to me and my occupational physician are really quite striking. (My heart and lungs seem fine.)
I get a lot out of the mutual support of others who are struggling with long haul. That's basically a few chat messages per week checking in. Because of these posts of mine I have also become a resource for new, long haulers. I hate to tell them I don't have any magic cures.
A few years ago I did a series of posts on Elizabeth Barnes' The Minority Body (recall here; here; here); and here). For me, the take home message was that all living is living within one's constraints. The adjustment process to my new constraints is frustrating, and generates lots of fantasies of sabbatical-like research escapism (especially because I can read and write pretty much normally again). And I don't especially like it (recall) when philosophizing is a source of escapism. But it could be worse.
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