Going public with Long Covid

I’m 62 years old and a woman. After living sixteen months now with Long Covid, I have decided to add my story to my website in the hope that it contributes something of value. First up, this is not a recovery story. It is a story of what it takes to live with Long Covid.

I caught Covid in March 2023. An Omicron variant, I imagine. I had a weird sore throat that lasted for two weeks, the virus heading north into my sinuses. I seemed to bounce back okay and thought nothing of it. I started to notice weird symptoms in May and June. I couldn’t handle the sun or the heat. I would go dizzy and feel strange. I continued as normal, keeping fit working out at home. Then, on 4 August that year, I was getting up off the floor after a half hour workout – 2 kilos weights, squats etc, followed by some stretches – when something felt like it had exploded in my head and I went violently dizzy. I felt as though I was overheating. I crawled to a spot under the air conditioning and turned it on full. I began to cool down but the dizziness wouldn’t stop. I worried that I had had a stroke so I called an ambulance. At the hospital, I was briefly examined (with no tests) and told it was heat stress and to go home and rest. I only realised it was not heat stress when I was still dizzy and foggy in my head many days later. Plus, I had fatigue. I also noticed that the symptoms were a lot like those I endured after the Covid vaccines. I even wondered if it was possible to relapse from a vaccine. But no. It was Long Covid.

The brain fog and dizziness and fatigue and migraines and energy crashes went on for months. Simple domestic tasks were an ordeal. I became very heat intolerant and had to run the air con 24/7. I was living in a hot climate and I could scarcely leave my little upstairs flat. I sold that flat and moved to somewhere a lot cooler.

The cooler weather made a difference. By now I was taking low dose aspirin. I also rested and rested and rested. I found resting helped a lot. Plus sleep. Loads and loads of sleep. Every day was the same as the last, a long and tedious marathon. Unpacking the groceries delivered to the door was a major ordeal that had to be done in stages. Cleaning the home was an all-day activity. I tried to pace and often failed and paid the price.

I began reading up on Long Covid, seeing if I could find any other ways I could help myself. After reading scores of research papers, I was as sure as I could be that I was looking at thrombo-inflammation, and that it was most likely caused by viral persistence. That my immune system was going nuts one way and another.

I didn’t get far into my research before I caught Covid for the second time between Christmas and New Year 2024. It manifested as a very bad head cold. I was infectious for about ten days. I bounced back okay but I knew I still had Long Covid 1 and needed to be careful. I found myself turning down invitations to go out. I couldn’t walk far without feeling dizzy. And then at the end of March, Long Covid 2 made itself known to me and I went downhill again with fatigue and dizziness and brain fog and energy crashes.

By then, I had seen a doctor for some blood tests. My C-reactive protein was elevated but not alarmingly so, as was my erythrocyte sedimentation rate. Both show inflammation. Negative for Rheumatoid Arthritis. I compared my results to those I found in a study of other Long Covid sufferers and they matched.

The doctor was no help. He told me to go home, lead a normal life and forget about it. I do wonder if he even believed me.

After a few months of rest and self care, the fatigue and dizziness and crashing eased somewhat, but a new wave of pain took centre stage. Sharp pain in my tendons and muscles, especially in my butt and upper legs. Tender fascia. Migraines, and whole body aches as though I have the flu. Pain in my spine. There one day, gone the next. Pain in a tooth. I went to the dentist. All was fine.

Now, sixteen months in, I look for signs of recovery. I know I am a lot better than I was, but that might be because I am managing it. With the exception of brain fog, every symptom will and does resurface.

There is also something that I would call the Long Covid mood, a sort of internal ambience, a dullness of being, an absence of enthusiasm, that for me is not depression, not even pessimism, but a mild psychological bleakness, the sort of state of mind that comes with perpetual struggle. I have read that Serotonin levels are reduced in Long Covid sufferers. Maybe that explains it.

I think my muscles have atrophied. I have tried to exercise and stretch but my body really doesn’t like it. I can walk one kilometre – I used to walk 10, fast – and I mean 500 metres there and 500 metres back at a moderate pace. I can do that maybe twice a week. That is all. I have learned to listen to my body. I try to pace. I avoid pushing myself because I have post-exertional malaise or PEM. It can come on quickly, or one or even two days later. Sometimes it is hard to pinpoint the trigger. PEM equals the reappearance of all the usual symptoms in varying degrees of intensity and duration. The more active I am, the worse the PEM backlash. It can set me back weeks. I have decided that triggering PEM is a very bad idea. After all, if I have symptoms, then what damage is being done inside my body? Consequently, I go deaf when someone mentions graded exercise.

I go deaf when anyone not suffering from Long Covid (or ME/CFS/fibromyalgia) offers me advice.

And I am not giving any health advice to anyone. But out of interest, here’s what I take every day: Two litres of filtered water. Low dose aspirin to help with microclots. An antihistamine as I am allergic to house dust anyway and it’s recommended. Top quality coenzyme Q10 for mitochondria and heart. Vitamin D, Vitamins B, live yogurt (although I know keffir is better), Magnesium in case it helps my muscles, and CBD oil which has completely cleared my brain fog. Also olives and olive oil. I stick to a healthy diet, as healthy as I am able to make it. I do my best to avoid anti-inflammatories but I will take a paracetamol occasionally, to take the edge off. I am still toying with Nattokinase as quite a few have said it helps.

I am not able to forget that I have Long Covid. I have no idea if I am going to recover or at what point my body decides it has reached a new status quo. I do know that improvements in my health are progressing at the speed of a glacier. I might have a couple of good weeks and think I’m doing fine, and then I go downhill again. I know if I push myself, I get worse. Everything I do has a price.

I am learning from my own experience that catching Covid a second time has meant a second round of Long Covid on top of the first, and I am as sure as I can be that the ‘recovery’ clock has reset to zero. Maybe the new Covid strain has parked up in a reservoir or two somewhere in the body, playing a game of dare with the old strain, maybe. My poor body! When the immune system is out of whack, when for whatever reason it doesn’t work like it’s supposed to, it feels like you are being beaten up on the inside and there is scarcely a thing you can do to fix it.

I want to end on a note of hope. I’m a novelist and I have found that the one activity I can pursue with relative ease is being creative. I don’t know why it is that my creative brain is pretty much unaffected by Long Covid, whereas if I have to concentrate on anything, do stuff like admin or problem solving or do anything mentally that is stressful, I quickly go downhill and I can stay that way for days or weeks. Being creative is relaxing and soothing. If I didn’t write, then maybe I would draw or get out the colouring pencils. Anything I can pick up and put down that is not strenuous and puts me in the zone. I mention this here in case it helps. They do say that activating the parasympathetic nervous system can help. But I am not going to claim that it is a cure. It is very easy to mistake cause for coincidence.

I stand in solidarity with the worldwide community of Long Covid sufferers as well as those with ME/CFS/fibromyalgia.