Life, Sleep, Meds: updates on my Long COVID, ME/CFS, MCAS and immune deficiency

A story of sleep and sleeplessness, new treatments and gadgets, pros and cons of weed and more... on the illumination of Fitbit and learning some new things for the first time in a while.

Image description: The face of a peacefully-sleeping cat laying on white bedding is centered under a white comforter. The cat has a collar with a bell, with one tan cheek and one grey cheek and a white muzzle with a touch of black on the lower side of its nose. The fur right over its eyes is tan then changes to gray as it disappears under the covers. Photo by Kate Stone Matheson on Unsplash, though it also looks like my cat Vivian.

It’s 5 am and I’ve been awake for a while. Used to experience this more frequently, till I got the miracle of a CPAP machine — the sleep medicine doctor’s theory is that even though I only have minor sleep apnea, it was still waking me up in micro-bursts multiple times an hour, and when that happened around 2-3 am, I would feel my chronic pain or other symptoms and it would jar me awake.

I would then often stay awake till about 6 am, when I’d fall back asleep if I could, or get up if I couldn’t.

Other times — like this morning — I would feel hungry during those awakenings, and realize I had not taken enough food in during the day (especially carbs) and was feeling symptoms from that. Especially if I was, which I am, feeling a lot of stress.

But I’d learned that those hours could be both peaceful and productive for me. While I do resent that productivity word, it’s true that these hours were when I would most frequently do “my own” writing, as opposed to the hours of emailing, drafting, meeting, and so on that I would do during more traditional working hours.

And the peacefulness was due not only to the quiet - which I’m experiencing now, with one cat on the chair to my left, and the other on the sofa to my right… It also came from the vast privileges of my life, where I work from home with a relatively flexible structure, often being able to re-arrange things to rest a bit more later in the day, with sympathetic co-workers who were either accepting of my disabilities and/or disabled themselves.

Today when I woke up, I was both hungry and anxious. Again, I recognize my privileges in this time, as a white person with some financial resources who can usually be well enough to work and now is temporarily able to get unemployment while in grad school.

But in addition to the general awfulness of this time two months into the second Trump administration/federal coup in the US, I have multiple related vulnerabilities and stressors as an aging, disabled transgender person in an all-trans household, including an adolescent, in a city whose mayor is complicit with the federal coup. Plus I’m in a mediation process with a family member, another (an elder) was just unexpectedly in the hospital, I’m taking on some contract work (while going to school full time) which involves unusual amounts of travel during the flu outbreak and ongoing COVID pandemic, and other things I can’t safely talk about online.

So I’m awake… And here’s something I wrote a while back about sleep that I wanted to share, with embedded updates since the time I drafted it last year:

The Illumination of Fitbit

I’m enrolled in the big NIH long COVID study. It’s called the RECOVER Initiative. Which is not a particularly great name, given that so few people with Long COVID recovery fully. 

Word has it that those who started the RECOVER Initiative figured most people would indeed recover. And thus the study was designed to measure lots of variables in people to try to distinguish what made recovery more likely…

That’s what happens when you give $1.2 billion to the wrong researchers, rather than to the few brave souls who have been digging away in the trenches of infection-associated chronic condition research - the Chronic Lyme researchers, the ME/CFS researchers, the dysautonomia experts -- who could have told them that recovery in the RECOVER cohort was not going to be frequent, full or predictable.

But anyway, the RECOVER Initiative wrote to me a while back, and asked if I wanted to get a free Fitbit that I could wear on my wrist to share data on my biometrics. I looked up the price of the gadget - it usually costs $200 - so I said yes, why not. 

This would be the third wearable data-mining equipment I’ve gotten as a person with Long COVID who is also involved in research advocacy.

Earlier in the pandemic, I tried out a Garmin wristwatch that would go into a larger study based on this pilot. And later, I helped to test a symptom tracking app called Visible that integrates heart rate data through a Polar-brand sensor the size of a thick quarter that strapped on my bicep.

I didn’t like the Garmin — it kept cheerleading for exercise, and its notion of a Body Battery that rated me each day bore little resemblance to how I actually felt.

I lost the Polar gadget. Then found it, then lost it again. The central premise — tracking my heart rate variability to try to understand my “energy envelope” and likelihood of fatigue or post-exertional malaise -- didn’t really seem to add to my understanding of my personal ebbs and flows. I may give it another go, but I’ve given away the device to another person with Long COVID.

This Sense 2 Fitbit does one different thing that has caught my attention - it tells me how much I’m getting different phases of sleep.

I’ve had a whole lot less gaslighting than most people with complex chronic conditions but the internalized gaslighting is a beast.  Seeing my nights laid out like this is intense and, well, affirming.

I’m grateful as fuck for whatever combination of circumstances, luck and privilege has allowed me to live for decades (or my whole life maybe?) with an immune system that is in some ways too active and in others not enough, carrying around a bunch of chronic viruses I can’t shake, that have led to a half dozen diagnoses by now without any of them being severe.

Updates — since I first wrote this, I’ve (finally) been diagnosed with selective IgA deficiency. It only takes a blood test, but no one had ever given it to me, even though my lifelong medical history — frequent infections, autoimmune conditions, worsening as I aged — is completely in keeping with the half of people with this condition who are symptomatic. And I wasn’t purposefully given a test to look for this - I was given a celiac disease test and the IgA test was bundled in because it can make the celiac test inaccurate if one has this condition.

That’s similar to the CPAP machine actually - despite having fatigue since my mid-20s and relatively good care access, it wasn’t till I was in my mid-50s and in care for Long COVID that the heroic cardiologist Dr. Susan Polizzi suggested I get a sleep study.

The CPAP machine that now helps me breathe at night has been one of the singular most effective treatments I have ever experienced.

Can someone clone Dr. Polizzi and Dr. Lee Hinnant? They are two of the few providers giving excellent care to so many people with Long COVID and other infection-associated chronic conditions in NYC (though Hinnant’s practice doesn’t take Medicaid and I have heard she is not taking new patients who say they are seeking Long COVID care.)

My atypical presentations

I’ve got “atypically mild presentation” of several conditions, including a rare autoimmune condition called neuromyelitis optica spectrum disorder (NMOSD), known for rapidly and often irreversibly blinding and paralyzing people. Sure, I’ve got feet that are numb from nerve damage and my poop is weird and some other stuff, but I went off the immunosuppressive treatment after a few years, fearing I’d be more vulnerable in a pandemic (this was years before COVID) or an outbreak of drug-resistant pathogens. And after a few years of still going to the neurologist, he said I could stop coming - I’m officially in remission from this rather scary diagnosis.

About 25% of people with ME/CFS are fully bedbound, and many can’t work full time. I’ve likely had it for decades, and got officially diagnosed in 2017. While I have fatigue 100% of the time to some degree - except for a few blissful periods of a few days to a few weeks where the weight lifted for brief remissions -- I can work (from home, and occasionally not), and I can parent my kid as a co-parent who has her with me half the time.

I’ve even had years where I can be a gym goer, to some degree, though that feels like ages ago. Currently, I do therapeutic Iyengar yoga from Samamkaya Backcare Collective 3-5 times a week over Zoom. Check out their FREE ADAPTIVE YOGA class for people with disabilities and chronic conditions. DO NOT TAKE THIS TO MEAN THAT EVERYONE WITH LONG COVID OR ME/CFS CAN EXERCISE - post-exertional malaise means many will get very sick and perhaps have irreversible harm from emotional, mental or physical exertion or exercise - as I have in the past.

And now there’s the Long COVID… Around this time of day with this level of stress, It’s hard to find words. They get stuck inside my throat but it’s my brain that can’t fully formulate them. I feel the shape of them, but there is a shut down on the conveyor belt process that gets them out of my mouth.

Thanks to Long COVID, I also have mass cell activation syndrome (MCAS) and react to food most times I eat, especially towards the end of the day. It’s like a temporary cold or flu that mostly subsides within an hour or two. When I’m less strict on the low-histamine eating — like I’ve been lately — I have more problems / annoyances like a pernicious, invisible patch of itchy skin on my left arm (which then spread to both sides, sigh) and GI problems like nasty acid reflux. But I’m grateful to not be facing the anaphylactic shock or other severe consequences of MCAS that COVID has triggered as a lasting problem for so many people.

There’s more, but you get the idea - I’ve got mild to moderate manifestations of what many have much more severely. And most all of it is in the category of unmeasurable, subjective, complicated, so I can start to doubt myself as far as the cause and effect of all this, even as I swallow upwards of 45 pills a day to seek to reduce short term symptoms and longer term consequences.

Some more updates: Dr. Purvi Parikh has helped me start omalizumab (brand name Xolair), for off-label use for mast cell activation syndrome (MCAS). It’s a injectable biologic treatment (i.e. usually expensive) that stops IgE from binding to mast cells. This plus the 10 or so other things I take for MCAS haven’t fully eliminated it, but it has really helped that awful itching, at least for about 2 weeks into the 4 week period between shots. I’m now seeing if my insurance will approve me getting it more frequently - I read that I may be able to get it every three weeks instead of every four. For now, I’ve been able to get a copay card from the company that brings down the cost.

And thanks to Dr. Polizzi, I have also started Repatha, another injectable biologic I’ll be taking every two weeks to try to bring down my high cholesterol that hasn’t been fully responding to statins — welcome to aging with multiple chronic conditions. This one isn’t covered by my insurance but again, for now at least, the company has a patient assistance program where I just paid $45 for six shots.

This brings my number of injectable treatments, including gender care, compounded supplements, and these biologics, to six. I’m incredibly lucky to have all this, and also… damn.

My sleep, illuminated.

So the sleep charts that reveal themselves to me shortly after I awake are a major advance in illuminating my understanding of myself. Even as I type this, I warmly imagine the graphs with their peaks and valleys, verifying my fatigue and exhaustion. 

I take very little time to fall asleep, and spend very little time awake during the night -- especially now that I have a CPAP machine keeping my breath steady so I don’t wake up, feel my chronic pain, and spend the next few hours alert like I used to.

But I get hardly any deep sleep most nights -- and that’s the stuff that makes us feel rested. It’s called “unrefreshing sleep.” And that’s what it feels like. I also can see that my heart rate variability is very low. And this can be a marker of heart fitness and adaptable stress response, and potentially linked to fatigue or susceptibility to post-exertional malaise.

The strap of the Fitbit gave me a rash, alas. I wasn’t sure how long I could keep this up. But for the first time in ages I was inspired to look for correlations, to illuminate the factors that made it possible two, three times in the last 3, 4 weeks to get over an hour of deep sleep. 

When I first started tracking, it seemed like I had more deep sleep and more REM sleep when I had sex and slept with a partner. But then I realized that I like to get high during those times — and it seems more related to the weed than the company. So I’ve started experimenting with different blends of sleepy edibles.

CBD alone doesn’t seem to do anything at all as far as increasing my sleep ratios. But a blend of THC, CBD and CBN (available in various enticing flavors from the myriad of dispensaries in 2024 NYC) does seem to make a rather significant difference. I also have to look for blends that have terpines that don’t trigger my allergies - this is less likely with the sleepy ones it seems but it’s still happened a few times. Make sure to read the update below on this though!

I got a different strap online that doesn’t trigger my skin, and I’m still tracking. It’s not curing me by any means, but I do think the cumulative effect of more nights with more deep and REM sleep is doing me good.

I don’t remember my dreams as much. That part I miss. But while I’m still fatigued, I’m often less tired. And that’s damn helpful.

Final updates: I started feeling queasy every day, and throwing up frequently. I was able to control the nausea and vomiting with daily ondansetron, which is an incredibly effective anti-nausea med that also seems to have helped my digestion as far as having more regular poop for the first time in… decades? But it’s not a good idea to take it long term, so a GI doctor put me on a proton pump inhibitor (PPI) — which ALSO is not great to take long term but we were hoping it would resolve the problem.

It didn’t.

When I titrated off the PPI, the nausea returned. And that’s when I realized - maybe it was the edibles. I’d been taking them regularly at bedtime for months. I believe I was having a relatively mild or early phase of cannabis hyperemesis syndrome. where weed users start vomiting whenever they use it (how sad!). Now that I’ve stopped the nightly edibles, the queasiness isn’t as bad, and I can still use weed in small amounts - but I’m still taking ondansetron a few times a week and need to figure out what to do. And note - despite my excellent access to care, I had to connect the dots on this one myself…

The strap and the Fitbit itself still irritate my skin sometimes, so I don’t wear it during the day all the time. It is more likely to irritate when I’m further out from the Xolair injection and/or eating food that I tend to react to, like gluten and dairy. In fact, I was itchy yesterday and put the Fitbit on its charger instead of wearing it - and I forgot to put it on at bedtime so I don’t have sleep data that could help shed light on the causes or consequences of this bout of insomnia. But I already know it’s probably because I’m hungry, in pain, and under extra stress.

And now that I’m not taking the edibles, I’m remembering more of my dreams. I’ve been keeping a dream diary, almost every day, since New Year’s Eve. I’m not sure why I’m doing it, but it seems to help me. More on this soon.