I interrupt my usual Summer blogging break with a new entry in my Covid Diaries. (For my official "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; here; here; here; here; here, here; here; here, here; here; here; and here). And, as is depressingly familiar, the situation is a mixed bag.
First, the interesting news is that earlier this week I saw a clinical neuro-psychologist through a referral from the NHS long covid clinic. Curiously enough, when my Dutch GP and Dutch occupational physician tried to refer me to one a year ago (!), my Dutch neurologist and the wider group of the occupational physician blocked it! It's against protocol in the Netherlands, where long covid is treated by occupational therapists (unless there are serious lung or heart symptoms). So after the covid induced migraine was diagnosed by my UK neurologist, my Dutch neurologist admitted it had never occurred to him as a possible diagnosis. This was a bit bitter for me because during my first visit with him I had an intolerable headache which he somehow kept discounting. (Mind you I am a male academic with lots of cultural capital in the Netherlands.)
As an aside, I am not entirely convinced I have a real migraine because, as I have noted before, my symptoms are very well managed by anti-inflammatories (basically extra strength Aleve--this is not available over the counter in the UK), and in my view the triptans are less effective against them. I return to this below.
The clinical neuro-psychologist is a young lad, who called me 'Professor' when he looked for me in the corridor outside of his office. (I was not used to that in this context so it took me a while to realize he was calling me.) I later learned he is also getting a PhD in cognitive science with a specialization on frontal lobe functioning. (I hope I have not outed him.) He had a two-volume copy of William James The Principles of Psychology on his shelves which immediately endeared him to me. Anyway, after the 110 minutes (!) of testing, he could reassure me there is nothing wrong with my frontal lobe or any of my cognitive functioning. However, I do have rather striking attention issues; so, once the information comes in I process it okay, but certain kinds of information (white middle aged male faces, long digits of numbers, and domestic images) are often screened out. Whereas words and geometric objects go in just fine--so I should still manage okay with the Principia!
On the whole the results are not surprising (although I found my inability to manipulate medium length strings of digits really disconcerting) because they chime in with the reasons why I was interested in this referral in the first place. As an aside, I did wonder if I would do better with women's faces. But then I remembered a disconcerting conversation with one of my lecture course students this past Spring, where after polite small talk in the hall way where she studied next to my office (in which I asked her name, who her favorite theorist we discuss is, etc.), I suddenly had the good sense to ask, 'we have had this conversation before, right?' And she said, it's the fourth time.
The really good news lurking here is that the patterns he found are very dissimilar to what they find in early stages of Alzheimer, dementia or stroke. (On the way home I did wonder what I would do with my life if there were signs of the first two.) Anyway, he didn't know what kind of label to put onto me (I think he is leaving that to the neurologist), except to say that I have a weird kind of attention deficit now (but nothing like ADHD he emphasized). Not unlike the neurologist, he emphasized that they seem my symptoms a lot in in the NHS long haul clinic. In addition, he was pleased to note that once in my cognitive functioning is okay, "superb" even. He and I both regretted there is no pre-Covid baseline to compare me with.
Second, earlier in the month we had a long family holiday on Paros. There I learned that I am still incredibly hyper-sensitive to sound and that social interactions (which exhaust me) have to be planned very carefully. It seems nearly every restaurant plays some background music, and even the kite-surf shack (where my family spent a lot of time without me) on the beach, which does not have running water or a kitchen, does have music playing. I was reminded of my graduate school dog park friend, Matthew Crawford's second book, The World Beyond Your Head: On Becoming an Individual in an Age of Distraction. In it he points out that in modern life we're surrounded by music and images that try to attract us or distract us, and that the airport lounges of the very wealthy are very quiet. (But I bet these, too, have a soft background music that barely register unless you are me.) Our public or communal spaces are not allowed to be still.
That's to say, the first week of holiday was a bit of a struggle to find the right balance for the three of us. Somewhat annoyingly, whereas during most of my long covid swimming has been a source of enduring pleasure, on holiday I noticed that I found it exhausting (which had also been true ahead of our trip). The really annoying thing of long covid is that my symptoms keep switching slowly after every three or four months or so (more below). Anyway, I do swim most mornings just to stay active. Even played some pick-up basketball with my son in the (rather warm) Greek evenings, which felt like a precious moment I would not have expected a year ago, but still wasn't wholly pleasant (because my head felt so strange).
Luckily, extra strength Aleve (500mg naproxen) is available and cheap over the counter in Greece, so I stacked up on it.:) And the really good news is that most of my symptoms (weird head fatigue, headaches) are very well managed with anti-inflammatories. I haven't had a real headache day in months. Sometimes I am very aware my body and even my head registers I was socially too active, but because of the Aleve I don't have any pain. So, on the whole I am much better than, say, six months ago because I really suffer less.
The bad news is that I have clearly stagnated; I continue to be hypersensitive to sound if there is more than one source in the area and all my social activities, including with my family, have to be carefully planned. This puts considerable hardship on my family, even on days where I think things are going okay. I have also noticed since I returned from holiday that when I spent hours on end in the library, my head starts to feel fatigued; this has never happened to me before not even during long covid (much to the bewilderment of my occupational therapists who all assume that anything work related must be stressful and exhausting). So, I take more breaks now. (The British Library is actually well designed for that.)
As a total aside, this year I submitted two co-authored papers that originated in my pre-covid days but where completion had to be postponed due to my illness. The first got rejected with decent reports (ref 1 fair; ref 2 a bit silly) and the second a major revise & resubmit, and while neither is tremendous news, it did make me feel almost like a normal academic again. This week I also completed a long draft of my review of Neil Levy's Bad Beliefs (which you should read his book that is, well also my review!:)).
I should close, but one pet-peeve. There is increasing evidence that weight loss helps manage long covid symptoms. And so lots of folk send me press releases on this and nudge me to 'consider losing weight.' Now, ever since I probably had a mini stroke/TIA a decade ago, I pay attention to my weight. And it is very clear that because of long covid I have gained weight; not just because I probably exercise less and eat more from stress/emotional need, but also because when I do 'diet' (basically a low carb diet), I don't lose weight as quickly as I used to. It's pretty annoying to be told 'consider doing X' while you are 'doing X.' (Beccy Lucas has a hilarious sketch on that if you are into that kind of thing.)
Anyway, while I dislike the social norm that we must exude optimism, I do feel very blessed that I have a forthcoming Fall (unpaid) research leave. I feel grateful my family found a way to make it work for them, and lucky that the folks at Duke and Arizona are willing to host me (with some funding). Recently I bought my ticket and found housing, and it's suddenly starting to feel very real. Anyway, with that I return to my customary Summer blogging break.
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