Daily Archives: June 10, 2023

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Long Covid and framing

Long Covid is being framed as the immune system going nuts and there are all sorts of ideas about what it is doing and why. And it may be that more than one of them is correct. But the assumptions that I am hearing are that we have to “fix” it. A disease model.

Since I have been through four rounds of pneumonia, and two other rounds that were probably also flares, I have a different feeling. I think that Covid-19 is a really nasty virus and that the immune system is CORRECT to be on high alert and upset.

But wait, you say, we are just supposed to put up with it?

No, that is not what I am saying. Treat infection. I wouldn’t be here if it weren’t for penicillin and clindamycin, not to mention that we know that tuberculosis is airborne and infectious. I would most probably have died as an infant if we did not know what we did about tuberculosis. However, rather than thinking of my immune system as broken now, I am thinking of it as being hyperalert. Perhaps having PTSD. What it is really saying is, “Do not get another infection.”

How does it say this? In my case, relatively mild chronic fatigue. Also, slower healing each round, this time taking two full years to get back to a chronic fatigue baseline. I am still feeling very lucky to not have a hypoxia and permanent oxygen baseline. I am also feeling lucky that my fast twitch muscles work again. But I have about half of what I would consider my “normal” energy. But don’t we all judge that “normal” from our peak energies in our teens and twenties? One friend says, “Welcome to your sixties!” when I complain that each time it takes more work and is slower rebuilding muscle.

Am I an outlier? I don’t think so. I think I am the canary in the coal mine, warning of what can come. I think that ANYONE can get a version of this, resulting from too much stress, infection or a combination of the two.

I don’t think we have to develop medicines to tweak the immune system. I think we have to change our CULTURE in the United States. We have to learn to value the parasympathetic state, not just the sympathetic fight or flight, aggressive, go go go, peak performance state. I think we are driving ourselves nuts and setting ourselves and our children up for illness and damage and a highly unhappy immune system.

So my approach to my version of PANS or Long Covid is to work on the parasympathetic state. Listen to my body. Rest. Think about what I want to do and then plan half of it. Be realistic about my energy level. Because if I can convince my immune system that I will take care of myself as best I can, and rest daily, and not be crazy, it will stand down. It will calm down. It doesn’t need drugs as much as rest, good food, good friends, and some work but not too much.

In a high sympathetic nervous system state, the immune system works less well. It is hyperalert too. People are more likely to develop auto-immune diseases, with Hashimoto’s thyroiditis being the most common. People are more likely to get infections too. We have to learn to value and support the parasympathetic nervous system.

The start is rest. If that sounds awful, the next step is breathing. Five seconds in, five seconds out, count and use a timer. Start with a couple minutes and work up to twenty. Pay attention to how your body feels at twenty minutes. It may feel unfamiliar. It’s also hard to keep paying attention to that five seconds in, five seconds out, even if you count. I start thinking about my grocery list or food or a friend I want to call and I have been doing this for YEARS. When you realize that you are not counting, return again.

I am a minimalist on pills, any pills. Supplements, vitamins, prescription. None of the pills grow on trees so I don’t distinguish between “natural” and um, what, “unnatural”? I think of it as “less tested” and “more tested”. As an allopathic physician, I prescribe when necessary and I get rid of pills whenever I can. It is better to take a daily walk and eat healthy food. And maybe take a nap too.

So this is where I start. I attended a whole program on LDN this week, low dose naltrexone. It is being used for fibromyalgia pain and for Long Covid and ME/CFS fatigue and brain fog. It has a very reassuring safety profile, pharmaceutical companies don’t want to fund research because it is old and relatively cheap, and we don’t know how long to put people on it, or what it does long term. More detail soon.

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One thing I am doing for health and joy is dancing. I try to dance at the Bishop Hotel every Tuesday, because it makes me so happy. The music makes me happy too and my friends.

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More fours

I am at Lake Matinenda, enjoying time alone. I think, well, I should really go spend time with my family, so I get up and go to the cabin. There is no one around, just the remains of breakfast. I eat and then lie on a bunk and read. Again I think, I could spend time with family. I will do the dishes, too. I hope I can do something enjoyable with my family.

I go in the other room and my sister is there, flanked by my cousins, X and Y. My sister raises her eyes to me and I know that I have walked into drama. X and Y are looking at me, as if I am to blame or need to do something. “I guess I had better fill you in,” says my sister. I wish I was not in the room. “Our friend, Ella, got pregnant and had a baby.”

So what? I think. “Who?”

“You remember Ella! She can’t take care of it. You need to take the baby while she is getting well.”

“Ella.” I say. I vaguely remember an Ella. There is a black puppy wandering around the room. Why the hell would anyone add a puppy to this? We are at the lake in Ontario and it’s a monumental pain to try to take an animal across the border.

“The puppy too,” says my sister. My cousins are looking at me expectantly.

I am calm, but I think, no. This is not my baby, I barely remember Ella, and I do not want a puppy. I don’t say anything, just wear my most calm face. My sister cannot read me any more because I now have boundaries. That still feels weird.

Later I am holding the puppy. The others have fallen asleep. I get up to return to my tent. I pat the puppy and let it go in the cabin as I leave. I think it will wake them, but it is not my puppy. I hope they can sleep some.

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This is another dream of fours. If the people are all parts of me, what do they represent?

My sister represents drama. She draws people in to help her with drama. I have been drawn in but I don’t want to anymore. I will not take the baby or the puppy.

X is an academic and seems to be channeling the absent minded professor. We are trying to sell a piece of land and after a year he tells me he doesn’t know how. He has a PhD. I say, “Didn’t you buy your house?” I wonder if his wife does all the non-PhD related work. Ugh.

Y is a grade school teacher and loves tea and roses and flowers. Sweet sweet sweet on the outside. But this history is of triangulation and believing my sister’s stories about me without ever checking. The dark side.

I leave the cabin to go to my tent. I will not join this drama, not try to talk sense into my sister, not engage with my silly role-playing cousins. And at the same time, I am letting go of the part of myself that likes the drama, that tries to rescue, that is the mix of sweet and dark, that chooses to not know. The cousins and my sister are all aspects of myself, that I am gently letting go. Quietly.

This is a healing dream.

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Dreams have layers of meaning.

I am still thinking about the puppy.

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Mica

I found this rock on Marrowstone Island, last week. All of the rocks are bright in the sun, especially right after the tide washes over them, but this one stands out.

The surface has layers and layers of mica. Apparently there are 57 different mica minerals, here, so I am not enough of an expert to know which it is. I can see the layers of flakes of mica. This is a beautiful rock.

For the Ragtag Daily Prompt: grasp.