I entered my 7th month of fighting Post Viral Covid this week.

-SEPTEMBER 24TH, 2020

I entered my 7th month of fighting Post Viral Covid this week. It has been a “good” week, so I thought I would share my progress. Any long hauler, or individual with a chronic illness, I gather, knows that “good” is so very relative. Unfortunately, it does not mean a substantial change in my baseline symptoms…and my neurological symptoms have been worse, but I have not had a relapse for 5 days so far. Long haulers identify the triggered worsening and reappearance of old Covid and Post Covid symptoms, from a long list of symptoms including fever, chills, and severe body aches. 5 days is a record for the last couple of months. In addition, my daily high temperature has lowered to the lower 99s. Much lower and I will not even consider it elevated anymore, but, this week, it is usually low enough not to bring body aches or cause me to feel feverish all day, which as you can imagine is an improvement. On the down side, my body seems to compensate with increased nerve, skin, and joint pain, but that is another story and I am usually more mobile with pain than fever anyway.

My average daily heart rate also lowered and is not tachycardic as often. This week was after a particularly bad four to five days last weekend for my POTS (Postural Orthostatic Tachycardia Syndrome) symptoms, including extreme lightheartedness, faintness, nausea, shakiness, etc., when not lying down and less extreme when resting horizontally. So I got this set of POTS symptoms to dissipate, to a noticeable degree, by this Monday (September 21st). I still have orthostatic intolerance and tachycardia when my dysautonomia is triggered, but it is a problem after standing or sitting for too long or getting warm, not incessantly.

The really exciting part is I seem to have MADE these improvements happen and I think I can keep using the same methods or use them again after I relapse. I might feel like I am starting all over, but really only am taking a step or two backward for the time it takes to suffer the relapse.

At the end of July, I began using the principles of graded exercise protocols, but modified to the equipment on hand (my body) and what my body preferred (gentle walks). Not a lot of the POTS patients, who the original protocols were made for, had as many additional syndromes and symptoms, or were as sick, as Post Covid fighters, so Mount Sinai Post Covid Care warned us the protocols might not be good places to start without modification.

The suggested first step was to be a breathing therapy program, but I got impatient waiting for this therapy that I did not yet even understand. I know I may need further supervision with more advanced physical therapy since it is such a balancing act. Post Covid fighters are always so close to overdoing physical or mental activity with post exertional malaise causing relapse. I liken the balancing act to walking on a tight rope woven of fatigue, pain, and dozens of debilitating and unknown symptoms. You have to try to walk across the rope, balancing, but if you are not careful, push yourself too hard, and fall off, you start over, losing weeks or months of progress while you start over at the beginning of the tightrope course. Even for those who think they got the hang of the rope, they can start thinking they can carry some of their old burdens and walk the tightrope…and that is when they fall off. The end, of course, is the end of the illness, but it is not in sight and you will not know it when you have found it. Either way the rope seems to stretch on indefinitely, when at the beginning we could always see the end just a little bit further. Another two weeks and the fever would be gone. Another two weeks and I would feel better. I may feel forever stuck in the middle with no visible end and little support beyond that of my family, conventional and Long Hauler, and the balance and skill I find within myself, but others are still crawling on the rope. Clinging. Hoping they will be able to stand and walk soon.

In August, I noticed improvements in my temperature and heart rate after a couple of weeks of short geriatric walks and occupied days full of frequent rests. Throughout those days, as soon as my body or mind gave me warning signals, I was careful to recognize the need to lie down. It took a couple of weeks with those short walks and those I had to undertake even when my body told me it needed to rest as long as I did not go into full relapse.

On my symptom spreadsheet for August (a subject for later discussion), the difference was not even that noticeable. It is more a matter of how long my temperature stayed low before peaking and a breaking of the daily pattern my dysfunctional temperature had followed stubbornly for five months. My temperature was in the low to mid-99’s for most of these specific days, only peaking to previous high numbers for short periods of the afternoon or evening instead of most of the afternoon and evening or daytime. This felt like an improvement compared to living most days with a temperature of mid to high 99s or 100s up to 100.9, especially for someone whose natural temperature is 2-3 degrees lower.

Long haulers with fevers and/or elevated temperatures for months are drained and depleted. We have all the body aches, feverishness, chills or sweats (depending on the person) to go with them. My autonomic nervous system is dysfunctional and has lost its ability to regulate temperature, among many other body system dysfunctions. So my temperature does not do what it is supposed to and my body does not react to temperature the way it is supposed to as well.

Unfortunately, it was that point in August, here in California, when the first triple digit heat wave happened, a thunderstorm, and fire season began in earnest. I had relapse after relapse since then with no way to break the cycles until last week because the air was too unhealthy and too hot to restart my walks for more than a day or two when I was not also on the worst days relapsing.

Last week, I was able to restart my walks and in less than a week my temperatures and average heart rate both lowered to their current relatively low numbers. I was careful not to trigger any Dysautonomia triggers and rest plenty. In addition, I incorporated breathing therapy, and my own brand of therapy, musical instrument study.

I did finally start the breathwork therapy that Dr. Putrino spoke about ages ago. Stasis Performance works with the Mount Sinai Post Covid Care patients for breathing therapy. I knew he said it was the first step for long haulers before graded exercise protocols, but I did not know it was specifically supposed to help regulate the autonomic nervous system in Long Haulers. So it was with surprise that I learned the point was not just to strengthen lungs after Covid, but to train the lungs to breathe a certain way that strengthens the parasympathetic autonomic nervous system which will in turn help balance and strengthen the more dysfunctional sympathetic nervous system. I do understand how this sounds, but the director of Mount Sinai Post Covid Care, Dr. Putrino, has been more knowledgeable about Post Viral Covid than any other doctor from any other institution and Mount Sinai’s theories have only become more applicable and accepted. I’ve come to trust Dr. Putrino’s theories in the generous spirit they were given.

Interestingly, when I do specific breathing cadences at night, from Stasis Performance, I keep activating full body nerve sensations. They are similar to the extremely uncomfortable, not exactly pain sensations I experienced when I had a home sleep evaluation and I had the device on my head attached with electrodes. It seemed to plug into my system of nerves and felt like my body was wired with tortuous electricity. It is worse than pain even if it is not exactly pain. I feel internal buzzing and vibration throughout my body that increases in intensity and turns into external tremors. That sensation is similar and and often coincides with peripheral neuropathy nerve pain, like burning skin and needle pricks and more, so I know it is my nerves. I am happy to know that the breathwork therapy is in fact affecting my autonomic nervous system, but it is unusual. I cannot actually stand the sensation so I actually have to get up move around and take what nerve pain medicine I have (CBD tincture) before I can continue. Then I fall right to sleep. If I try to hold out, the sensation will win. It can last for long periods in the night and used to delay sleep.

I have no idea if this is a thing, but I am calling it one. I started teaching my sons to play the recorder and penny whistle at the end of the summer. Well, it is a stressful year and the boys come and go while they get adjusted to an unusual school year and lingering post covid symptoms, but I continued to teach myself both instruments. Ever play an instrument with full body and hand tremors or when you are battling short term memory deficits? I think it is good for my brain, my manual dexterity, my lungs, and I am positive music is good for the soul, uplifting us and giving our wordless thoughts wings like a prayer.❤️