TW: medical/illness chat, baby chat
It’s taken a lot for me to type this out. Now that I have regained some very hard won normality, its become very difficult to revisit what was undoubtedly the most difficult year of my life. I think a brief chronological rundown is the easiest way to explain what happened to me.
On the last few days of March 2020, I came down with what felt like a nasty stomach bug. Within only a couple of days, I felt like something was very wrong. Phoning my GP and describing my symptoms left them confident that it was covid. At this time, the news was in the thick of the three-symptom narrative, so I was doubtful. I had no cough, no high fever (my covid infections have always given me persistent low grade fevers, more on that later), and no loss of smell or taste. Naturally, the other people in my life were doubtful too.
However, within a few days, it became clear that this was very much a new virus that my body was not coping with. The gastric issues worsened to the point that I was frightened to eat. I fell into a rapid and alarming depressive state. My whole body ached and I could only speak for a few minutes at a time. And then came the worst symptom - waves of horrible burning sensations that started at the crown of my head and travelled down my spine and arms. It was inescapable and utterly horrifying.
Add in pressure on my chest like a lead weight, which most people in my life attributed to anxiety (spoiler, it mostly wasn’t) and alarming spells of numbness and tingling in my extremities and spine, and I was on the phone to 111 almost daily. There was absolutely nothing they could do, other than reassure me that as long as I could breathe, I was fine. I most assuredly was not fine.
Around this time, I had a very frightening incident where I felt something go snap in my forehead. As I didn’t collapse and die, nobody was too concerned, but it was not my favourite thing to experience, and after that I stopped sleeping.
My youngest was 9 months old and still breastfeeding. She was restless and needy, and it became apparent that my milk was not as good as it had been. When I pumped for bottles, it was grey. Skipping a number of horrific weeks - on 14th May I had been awake for a number of days and nights consecutively and I had to stop feeding her cold turkey, so as to start taking zopliclone to help me sleep. I do not recommend, but I was not in a good place.
At this point, the burning was subsiding but I was still weak, struggling to eat and having lots of issues with my nervous system, as well as bruising and rashes. I was given CBT and sertraline for my depression, which helped, but the root cause of the damage done by covid remained.
At this point, I will skip ahead and summarise, because in April 2024 we are past four years of living with the aftershocks. In that time, I underwent treatment with my local long covid clinic, who were very helpful and got me a diagnosis of dysautonomia - the dysfunction of the automatic nervous system. The amazing lead doctor at the clinic fought for a referral to the expert consultant treating long covid patients in my area, and through him I received a diagnosis of Mast Cell Activation Syndrome (MCAS). I am on a very complex medication-based treatment for this, and it has definitely helped. To be clear, the MCAS was directly caused by the covid infection - my initial infection in 2020 has left me chronically ill.
Since that first infection, I have had three further positive covid tests - for the most part, these were more typical covid infections, but they have caused setbacks in my management of my symptoms. Now, in 2024, I am only just in a position to start rebuilding my fitness, carefully.
My enduring symptoms are brain fog and allergy symptoms, for the most part, and a flare up results in chest pain, muscle pain, rashes, joint pain, gastro issues and burning sensations. Most of these are MCAS related. I am still under private consultant care and I take a cabinet full of meds daily. But in the scheme of long covid recovery, I can tentatively be thankful that I am doing pretty well.
This experience has left me with some health anxiety - mostly because being told by doctors “we just don’t know, yet,” for multiple years, as well as the endless rotation of headlines about the horrors covid may have done to our bodies, can take a mental toll. I avoid reading about the research, and my extremely supportive husband does the googling and keeping an eye on the advancements. I hope to one day be able to truly put it all behind me.
If you’ve read this far, thank you - and if any of this sounds familiar, please do reach out.