I am taking my customary end of year blogging break, again. And I hope to return to near-daily blogging in January.
I have enjoyed and appreciated all the well wishes, my dear readers. (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; here; here; and here). It's a strange feature of my current disability that it is easier and more relaxing for me to write a blog post than to have a minor conversation in a café or restaurant. Social interactions are exhausting, and if there is ambient noise or more than one interlocuter, I am likely to have headaches and bad sleep (and a kind of 'soft'-brain fog--in which my thoughts slow down and my phenomenal experience is not as rich as it ordinarily would be). Unfortunately, the side-effect of such interactions is reduced time and energy for blogging, and other writing. (Basically I have been unable to do research while I taught my small Fall course.)
My occupational therapist has convinced me to try to limit social interactions to no more than thirty minutes. And to plan plenty of rest between them. Her theory being that longer interactions just drain me of all energy. 'Energy' is the explanatory concept, the goal, and the ground of everything the occupational therapist says to me. (In Dutch, the occupational therapist is an 'ergo-therapist,' and in conversation with her, I have to prevent myself from using random passages from Aristotle's Ethics.) She basically compares my brain to a car battery that due to my current activity pattern is incapable of fully recharging and, so, fails to retrain itself post trauma. (She alternates comparing my brain to one that has suffered considerable trauma and one that is suffering from burn-out.)
As I have noted before (recall), the occupational therapist has induced a number of behavioral changes all of which amount to avoidance of multi-tasking, doing a better job of relaxing when I should be relaxing, and to give myself a chance to 'build up energy.' Luckily, I don't have to teach for about eight weeks, and I will also try to do more exercise along the way.
The most recent meeting with the occupational therapist annoyed me greatly. Basically, all the new exercises (and 'home-work') involve planning exercises. These are chapter 2 of the exercise-book I was given. It took me a while to figure out why I found it annoying. (The occupational therapist is a funny and empathic person.) But after some reflection, I realized it was because I felt I with my particular symptoms wasn't being treated, but rather I was a number being put through a pre-existing training program. Undoubtedly, the training program is useful, but while i have some cognitive impairments, inability to plan my life is not one of them.
As I said it took me a while to figure out my irritation. What triggered it was her considerable surprise that reading and writing is relaxing for me. Her surprise didn't bother, but the lack of adjustment of the training program does. In particular, she sent me a number of videos (which her patients appreciate greatly) even though I had explained to her earlier that zooms and videos are especially draining. Paying attention to another's reasoned argument or explication basically sets me back a day; whereas reading is a piece of cake.
All of this is in the category, minor troubles relative to the sorrows of humankind. But since I have been sick for a year now, and the pattern has recurred with several other health care providers (go read the covid diaries), I am more attuned to it. Basically nobody knows what my underlying problem really is, and nobody is willing to spend public money to do the kind of invasive testing to figure it out. The testing itself is unlikely to produce conclusive evidence of what's wrong with me, and it is unlikely it will produce a suggestion of how to treat me. And since hospital visits actually set me back days on end, the medical system sensibly hopes my body will cure itself eventually rather than drag me in for lots of tests.
Since this gets repeated with most folk like me -- i.e., long haulers without clear lung and/or heart problems --, we're also disappearing from the system. Nobody is counting how many of us there are, and how much work is being lost. Basically, GPs and and occupational physicians keep track of their own patients, and they know I am not alone; and they share best practices in whatsapp groups. Often we read the same pre-prints when I come to them with experimental treatments. Interestingly enough, the London covid clinic prescribed me heavy dosage of melatonin, and then my UK GP refused to prescribe it except in very small dosage. (This is actually funny because in Holland melatonin is an over the counter drug, but my Dutch GP expressed surprise that this would work at all for long haul.)
My Dutch neurologist told me he rarely sees patients with long haul. (Meanwhile, the waiting list for the neurologist in the London long haul clinic is over a half year now.) Since in the Dutch system, the costs of the first two years of (partial) medical leave are born by the employer and employee (I have have a pay cut alongside my reduction in work hours and responsibilities). And that means that the government will only start noticing us in the Spring of 2022, when the first generation of long haulers will be pushed partially into social security. And since the employer is initially responsible for finding fitting work for the employee, the government will only notice those who are completely disabled or those working for very small companies. So, the numbers, if any, won't start adding up until later in 2022 and 2023.
If I could handle social interactions, this would be the moment I would try to mobilize a Dutch patient group for long haulers. But the very idea of trying to fight the system, and to coordinate many despairing and angry patients, is not 'energy enhancing.' And so I hope that by planning well and conserving energy, I recover sufficiently so that I can keep a version of my job by the end of next year. The system, of course, finds my defeatist response very welcome.
I have come to describe myself as cognitively 'disabled' and 'impaired' (or 'handicapped'). I know that sounds final, and I don't believe it's final. But I have also noticed that 'sickness' doesn't convey my situation and what I need. I need others to accommodate themselves to my limits, and it means that I have to police these limits in a way that I am not used to at all. (It reminds me a bit of when I had to keep visitors away from my partner and son when he was new-born.) And I am also discerning that I have to police my own activities most. Obviously, this risks a spiral of social isolation; I am no fun to be around because I can't do much or engage in much. Yesterday, when I was in the office, I literally had to keep well-wishing and well-meaning colleagues from entering my office because I needed time to recover. And it is very difficult to be a partner and dad, when you have to do it in twenty-five minute installments.
The reason I use 'disability' is because when people encounter me they can't see anything wrong with me. And while I don't fit some of the stereotypes of cognitive disability either, at least with cognitive impairments, we're used to them not being wholly visible in one's countenance. (Sometimes people notice I am tired or green/gray.)
As I noted recently, I have also been diagnosed with partial hearing loss. This has nothing do with covid, it seems, and is potentially reversible. But it occurred to me that one reason why social interactions are so exhausting is that because of the hearing problems I have to work harder at hearing and processing what people say. (This is a good place for your favorite joke about ignoring what others say!) One day, I'll write a paper about intersectional disability.:)
In January, I'll do a post on how all of this has changed my approach to teaching. But I have gone on long enough, and I need some time away from the screen. It is the way.
the only time one hears about personalized healthcare that isn't targeted at the very wealthy is when someone is hyping genetic engineering. I went to see a physical therapist once because I had fallen 3 times that year due to inner-ear problems and when she finished her testing routine she told me I was in no danger of falling...
peace in the coming year, dirk
https://one-year-later.com/2021/12/09/structural-gaslighting/
Posted by: dmf | 12/09/2021 at 11:55 PM
Eric, just read this for the first time. I have been off of Facebook for a while hoping fruitlessly to get more done. Not happening. upsetting to hear that your problems were continuing. Hope things are better since then. Remember that the covid shutdown of so much that is normal is probably also adding to your problems, just as many of us are also having psychological and sometimes physical problems from that context. Exercize does help me.
Ask your therapist if she could just listen to you rather than giving you unwanted advice, or maybe look for a different kind of therapist.
Best hopes for things to keep improving ❤️Barb and Bill
Posted by: Barbara WimsTt | 01/31/2022 at 01:43 AM