“I am now the person
who is alert to every twinge
or mark anywhere on me.
I am getting to know this person.
This is not me
This is me”
Michael Rosen, Going Home
I never thought that I would be writing this today. Firstly, I never thought that this disease would last this long. Secondly, I tend not to be too keen on sharing personal stuff online, and I was reluctant to continue my post from last August about my experiences with Long Covid. I have decided to write this blog post because it seems like there’s still a lack of information about Long Covid out there, and that adding to the growing number of people telling their story may help to make this more real for people, and help increase the visibility of the disease. This post will be shorter and offer less detail than the first post, but I hope it will still help people to understand a bit more what life is like for long haulers.
March 17 is my Corona symptom anniversary. I was infected between the 9th and 11th of March 2020, I had very minor symptoms that started in March 14 , but by March 17 it was clear that me and my wife that were sick. As mentioned before, she also has Long Covid, but our symptoms tend to be quite different, and almost never coincide. She’s better, but also suffering from relapses.
It may be a good time to explain what exactly is Long Covid. This is an umbrella term to design a range of symptoms that are suffered by people who had a covid infection, either tested or suspected. It tends to affect mostly people who had a mild version of the disease, and it is mostly found in younger and healthier people.
There is no scientific consensus on what is happening with long haulers, or how many of us are there, but by now the phenomenon is evidently real. The most widely circulated number right now is that 10% of all infected have some sort of long-term effects from the covid infection. The range of symptoms is staggering: fatigue, persistent fever, brain fog, gastrointestinal problems, hair loss, neuropathy, muscle pain, swollen joints, unexplained rashes, neuralgia, and palpitations. Some reports of organ damage to the lungs, kidneys, heart, and liver have been reported. The most common symptoms are fatigue, gastrointestinal, and the brain fog.
There are three possible causes:
- Persistent viral reservoir.
- Viral fragments/remnants of the RNA protein driving inflammation.
- Autoimmune response induced by the infection.
There’s growing evidence to support each of these, so it could be possible that all three are true, which explains the range of symptoms people have, but also the fact that some of us never experience some of the symptoms that others do. I never really had a fever other than a couple of days during the initial two weeks, while others had fevers for months. I also had GI symptoms only during the second week of the disease, while many still have them.
Living with Long Covid
When I last wrote about my experience, I was approaching the six month mark. Things had improved, but I was worried that I may have some sort of organ damage. I wasn’t getting any answers in the UK, and while the NHS has been fantastic in many ways, I got the impression that the system was not setup to take Long Covid seriously, at least back then. So we decided to risk a trip to France to take advantage of a superior health system at the testing level. We managed to get a full range of tests, from blood to CT scans and X-rays, and we were delighted to find that neither of us had any noticeable organ damage.
I can’t tell you the relief I felt when I saw my CT scans and the doctor declared them to be normal, my biggest fear was always some form of damage that would reduce my quality of life considerably. But I was still not well, although things had been slowly improving. September saw a marked improvement in all fronts, I was regaining strength and fitness, the dreaded brain fog had started receding, and I started feeling like my brain was coming back online. The bone-crunching fatigue started to dissipate as well, and it is now entirely gone. The most horrible thing during August and September was actually cosmetic, I started losing hair during my showers in big huge clumps, the first time I saw a big bunch of hair in my hand I almost screamed. Thankfully this has stopped, but I’m not sure if it’s ever growing back.
At this same time I started to experience the most persistent symptoms, mild dysautonomia and facial neuropathy. The dysautonomia has affected me mostly with positional pain, dizziness, and sometimes a difficulty to regulate my body heat, I get extremely cold in one leg, or in my chest, or one hand, and nothing else is wrong. I’m not sure if what’s happening to my face is neuropathy, but I have no other term to describe it. Whenever I get a relapse, I get a very slight numb sensation in parts of my face, particularly the left lip and the eye, and my eye gets very red, in a few instances it feels like my cheek is swollen, but not much. This is not serious in the grand scheme of things, but it is extremely annoying and upsetting.
Since October I’ve had two major relapses, and quite a few minor ones. In October I had a return of the cough for about three weeks, and then I had a pretty bad relapse in early November when I seriously thought about going back to the ER, I had serious chest pain and dizziness, but I only went in for some tests, which again came out fine. This was the last very bad spell of fatigue, followed by a sense of dread and unease, what some people call it an “impending sense of doom“, your body knows that there’s something wrong, you become anxious and agitated, the body is in fight mode. Things improved quickly, but I had what felt like inflamed lymph nodes in my left armpit by the end of the month.
December was a really good month for the most part, with improved strength and fitness, and the very last day of full fatigue.I still had a few relapses, mostly chest pain and cold sweats, and a few night terrors, which seem to be common during the relapse. During those three months my brain fog had receded, but my brain still felt like it was missing something, I had no wish or desire to read or write anything, all I could manage was Twitter. I had some neuropathy in my right arm at the end of December.
Since January things have continued to improve, with a few small relapses. The main symptom is an annoying migrating pain, a return of the facial neuropathy, and a bit of brain fog from time to time, as well as facial inflammation. Recently I have been experiencing joint pain in my right hand, and a few night terrors. Going to bed with chest pain triggers a bit of anxiety, your body is telling you to do something instead of going to sleep. I still get those from time to time.
However, the relapses feel less virulent than before, and I really feel better for the most part. The annoying chest pain still worries me, but everything else appears to be getting better, but then again, I have been saying that since August. For the most part it’s true, I’m more active, but most importantly, my brain feels like it’s back to normal. I can teach, I can write, and I feel like writing, for large spells it felt like I would never be able to regain full use of my brain. The most upsetting thing about the disease during June and July was that I had a feeling that my brain was operating at half capacity.
I don’t know what the future holds, but I have some mixed feelings. I feel like this year has aged me 10 years, and while slowly regaining fitness, some of the possible lasting effects are still scary. There are reports in the long hauler community that the vaccines are really improving people’s lives, and it seems like many of the symptoms do go away after vaccination. We will see.
The good thing to come out of all of this is that I am truly happy to be alive. Long Covid affects people differently, and there are some truly horror stories out there. Strangely, I feel like my mental health has seriously improved this year, I feel different in many ways, more determined to get healthy again, and also more willing to enjoy every day. This may sound like soppy sentimental talk, but having been presented with such a lengthy disease really focuses your life. I was happy before covid, but I can honestly say that I feel happier, calmer, more content. I enjoy little things more, I treat myself more, you never know what tomorrow will bring.
I keep thinking of the very last day that I felt healthy, March 16 2020. It was a good day, we went for a walk, I said hello to the neighbour’s cat, and enjoyed a beautiful sunset. Then Covid happened, and kept happening. And it hasn’t stopped. So now I enjoy life whenever I can, the good days are better than they were before.
I’d like to leave you with another thought. This disease is real. One of the most difficult things during this year was to convince friends and family that we were sick. We had all sorts of dismissals, thankfully quite rare. It’s all anxiety. It’s in our head. Just exercise and it will go away. I never wanted to be sick, I’m actually the opposite, the guy that will not go to the hospital even with a broken bone until three days after (true story). So next time you hear a story about someone with Long Covid, lend them a sympathetic ear, it makes all the difference in the world.
ETA: I’ve been made aware that it may look like I’m dismissing anxiety. Nothing can be further from the truth, I’ve been an anxious person most of my adult life, so I know how crippling it can be. What I meant to say is that people have tried to diminish the physical element of the illness. The anxiety is real.