This past week, I started two new treatments: on the advice of the UCLH long haul clinic (in London), I started a nightly round of Famotidine. It's mostly used to treat acid indigestion (and related ailments). And when my Dutch pharmacist dispensed to me, she started to explain its use to that end. She was surprised I was prescribed it to treat my long covid. (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; and here). My Dutch GP, who is kept abreast of my treatment plans at UCLH long haul clinic by me thanks to a wonderful patient centered app the UCLH hospital used, commented that she thought the evidence was rather thin for the effectiveness of Famotidine in long haul. Since I had presumably looked at the very same studies as she had, I had to agree. When the physician at UCLH had suggested Famotidine to me, she said they were doing new trials -- I had been excluded from these because of a too recent booster -- and claimed they were finding that Famotidine was improving cognitive functioning by 20% or so. While a part of me was supremely curious about the measurement of that number, at over fourteen months of illness, I took a modest amount of hope over no hope of improvement. The underlying idea was that my immune system was generating some kind of inflammation. I wondered whether the anti-histamine of Famotidine might help control the effects of my chronic sinusitis.
In response to my very kind Dutch GP, I pointed out that the referral she had just written at behest of my occupational physician to start treatment with a 'neuro-psychologist' specializing in long covid, was for a treatment that had no known clinical efficacy for long covid. For, I was under the impression I was being referred for cognitive behavior therapy (CBT). My view was this was unlikely to help my particular symptoms, but I decided it was worth a try since (i) it might benefit me in other ways, and (ii) it was a good idea to be a cooperative patient of my occupational physician (who so far had been a reliable ally). After my intake meeting with the 'neuro-psychologist' a few weeks ago, I was a bit puzzled because she warned me that my treatment might last for one or two years; I always assumed CBT was favored by society because it was relatively brief (and so cheap). But this past week, I realized that CBT would be a minor part of my treatment--one might call it a façade for insurance purposes, but to do so would get someone in trouble.
The underlying idea of Dutch occupational physicians is that long covid is primarily the effect of a stress system that is out of control. And this, in turn, is an effect of pre-existing conditions or life-style of those hit by long covid. (Since the Dutch university system is chronically underfunded and burn out a systemic problem in it, we should be hit by massive wave of long covid!) So, it's best tackled by a range of low key interventions like teaching patients how to medidate (via an app offered for free by a Dutch medical insurance company) and to re-acclimatize the brain to filtering out various noises. While undoubtedly earnestly felt by those who propagate it -- and a nice cover for complete unwillingness to research long covid by Dutch medical researchers --, it often comes across as victim blaming. (I first learned about it from a fellow long hauler, a high school friend, who is one of the most successful people in the Dutch art scene now, who was not amused.) My neuro-psychologist makes a great show not to blame me -- in fact she repeatedly praises me for life-style changes made during the first year of the pandemic --, but points out my problem is the effect of the accumulated stress of many years showing. I have decided that the best thing about learning mindfulness is to be steeled against this kind of talk, and that after all the British won WWI with a terrible theory of airplane flight (go read David Bloor's classic).
Anyway, my treatment is fairly straightforward: I have to meditate three times a day. One of these times should be after a ten minute period in which I try to work/read with some kind of noise or music in the background. This is to start getting my brain used to filtering out noises. In addition, I am not allowed to wear my noise canceling head-sets while walking about town. (We compromised that before my three remaining lectures I can do it.) I am also trying to reduce cortisol production, so I should avoid exercise that leaves me drained. (Luckily my kind of mellow lap swimming is permitted.) At my own initiative -- surely successful entrepreneurism improves well-being --, I have started to drink black teas, especially Lapsang Souchong, which has the best name and odor in Tea-land. Daily, I thank the heavens that my sense of smell is fine.
In reflecting on existing sources of stress, it occurred to me that that the possibility of an accidental nuclear war and, more prosaically, my uncertainty over my job future might not be trivial. But after meditating on it, I was also reminded of the hard work I had to put in to get some medical reimbursements -- the blood tests I discussed in my last covid diary still hasn't been paid yet -- and to get my university to pay up in various ways. At some point someone in HR decided that given European jurisprudence, the university was required to pay my vacation days in full. (Since I went on partial disability, they had been paying me in pro-rated fashion.) But unaccountably they decided they only had to do so in 2022 and not in 2021. Some correspondence with my chair and various people in HR ensued. I decided to consult my union and read up on the European and Dutch jurisprudence. Somewhat fascinatingly, vacation is treated as a human right in European labor law now, and so employers have to pay out vacation days in full. The union lawyer told me that Dutch jurisprudence had been settled on this quite a while now, and that their practice is to demand full pay-out once an employee can't continue in their job. I wrote a fine letter to HR, and eventually my chair informed that my asking for reasons had apparently caused a change in policy. (I should expect some modest back-pay in a month or two.)
Because I strictly control how many bureaucratic battles I fight per week, I have left the insurance claim for next week. I also have another bone to pick with the university because they refused to commit to paying any balance between what my insurer will cover for the neuro-psychologist and what she will charge. (They cover 100%, but that's 100% of the rate they want to cover.) I was surprised the university was unwilling to do so because the money involved would be modest, and we often pay for all kinds of coaching, mediation, and training (including stress management). And since the neuro-psychologist was prescribed by their own occupational physician, I thought my case would be strong. But I decided to wait with a new letter to HR until it's clear to me how much extra money we're talking about.
That's a let of set-up for the main business of this 'diary.' I have taught ten sessions now of my huge lecture course. I still have trouble falling asleep and sleeping after the lecture, but out of ten sessions, I have had real headaches only four times the next day. Most of the weirdness in my head is gone by the next afternoon. Since all restrictions have been lifted, the auditorium is now filled with students. They kindly wear masks on my behalf on the first three rows, and they send me super sweet messages of encouraged and gratitude. In turn, I adore performing my act for them, and while a part of me is horrified that I have become a figure of entertainment, I soak up the applause after each lecture. I'll be curious to see the evals, but I think it's probably the best cycle of the lecture course I have taught; because I don't try to entertain myself (and so avoid most of the improv shtick that confuses students), I follow the outline of my slides carefully--I have never received so much recurring feedback on how clear I am. If I wrote a private diary, I would have had an entry by now on how I became an analytic philosopher through long covid. Anyway, the good news is I am clearly much better than a few months ago, and I can imagine teaching more even with my current limitations.
I decided to go to London last week-end and visit my family who I had not seen for a month. Nobody had told my teenage son (who is decidedly taller than his mom now and only an inch smaller than I am), and the surprise and joy on his face when I opened the door was followed by a fantastic bear hug. While it was a sweet visit, I learned that I am still fairly easily drained by non-stop interactions. By 'drained,' I mean I get my characteristic head-fatigue (from the nose up) and the start of a headache. So, I withdrew a few times into the bedroom and simply laid on the bed. That helped. At night I slept deeply and calmly alongside my better half.
Yesterday, I started the experiment with ten minutes of concentration alongside background noise. I went to my favorite espresso bar, and decided to read a book outside. Next to me was a guy talking loudly through his earbuds while I was trying to read a paper I was supposed to referee. I have to admit the guy's talk drove me batty. I lasted about eight minutes, and the nausea only dissipated after a half hour amble in the part. Even there the city's noises are never distant. With my noise canceling headsets therapeutically left at home, I already miss the quiet.
Meghan O'Rourke is quite good on giving folks the chronic crip's eyeview:
https://www.npr.org/2022/02/28/1083536095/long-covid-chronic-illness-searching-for-answers
Posted by: dmf | 03/15/2022 at 04:02 PM