I’ll begin with these useful articles, just the more relevant ones I’ve seen, and a couple of support groups if you need them.
Article 1: Long haulers are redefining Covid-19
Article 2: A Supercomputer Analyzed Covid-19 – and an Interesting New Theory Has Emerged; A closer look at the Bradykinin hypothesis
But I’m not here to educate you on ever-changing-currently-still-learning scientists on C19. Read them if you’re interested, or come back and read them afterwards. I’m here to talk about my own experience of Corona, Covid, the virus etc. No, it’s not ‘just another flu’.
I am not writing this for sympathy, kindness, pity or help. I’m VERY blessed, and very lucky indeed, I have a loving family, great home, lots of support. I’m a psychotherapist and so constantly observing and learning from my own experiences. I’m treating it as a harsh learning experience. I understood chronic illness, chronic fatigue, intellectually both professionally and personally (others). But I did not have a felt sense of the experience, and though naturally I’d really rather not have, it’s actually been helpful to really ‘know’ how my clients/family/friends who suffer these things actually feel. I’ve been able to continue to work, due to some amazing support. I have gratitude up the wazoo, because frankly? I’m still here to tell the tale. That’s a WIN in my book.
I’m writing this out, so that there’s a written record of it. So that it might help others who have felt like they’re losing the plot, who are questioning and doubting themselves. I’m not doubting any more. This is my experience. I now know there are many, many others going through the same things. Covid Long Haulers support groups are prolific and enormous. Yes, it’s a thing. Don’t doubt yourself. Even the local town doctors are now recognising and taking it in their stride that ‘yes, it’s a thing’.
OK here goes.
My C19 experience began on March 13th 2020 (I believe, since of course no testing was happening outside of the hospital intensive care wards back then). I was driving home, North from Southampton and stopped at a services needing fuel. As I left the services, literally driving back onto the M1, I simply knew I was getting sick. Never mind your 7 to 14 days incubation period; I knew the moment it hit my body. By the following day I was in bed, sick and feeling dreadful.
I have pre-existing COPD (chronic obstructive pulmonary disorder aka lungs are fubar from years of smoking), Diabetes type 2 (my pancreas was damaged during a surgery), and a heart condition (arrhythmia due to an electrical fault). Nice big ticks on the ‘at risk’ boxes. However…
I did not particularly suffer the typical chronic cough everyone talks about. I DID feel more ill than I have felt in a long time. My body ached and literally hurt all over like a horrible flu, aching muscles and bones. It began with the sore throat/back of nose, penetrating and revolting. I could barely lift a finger, and spent time either at my desk in the upstairs office when I absolutely had to be (I’m stubborn as heck), and in bed every other minute. I shielded from the household to try to protect the others. I stayed in the spare room and my office only (didn’t come downstairs for weeks). I bought bulk buy disinfectant wipes and wiped the toilet and bathroom every use myself. The others brought me food, placed it on the affectionately named ‘plague shelf’ at the bedroom entrance, where I’d fetch it, eat what I could, and return it. They’d remove the crockery and wash their hands devotedly. They were thankfully, all safe (or asymptomatic).
I fought to avoid hospital admission. I was scared. But I’m not actually daft, if I’d really struggled to breathe, I’d have gone in. Despite how ill I felt, I’ve suffered and survived (in the past) pneumonia, pleurisy and bronchitis galore; I’m damn good at that business. I took ALL the things, self medicated to the hilt, took the GP prescribed emergency pack at home, stayed in bed and rested (not that I could do much else to be fair). So I avoided hospital and to this day thank my lucky stars.
NHS therefore class my experience of C19 as ‘mild’.
I was in bed for two weeks. I cancelled some work (I work from home, online), struggled through others, and carried on. The fever was dreadful, sweats and brain fog, crazy dreams and surreal moments. My body hurt, did I mention that? A lot.
I started to feel better, was briefly ecstatic, then within days would feel truly dreadful again, the sore throat would come back, the body collapse again. This ‘false recovery’ was a pattern for several more weeks. After 4 weeks we figured I must be ‘over’ the actual virus or at least technically safe, so I came out of shielding from the family. Those first hugs? Literal gold.
Except… my ‘good days’ (where I felt I was improving) were interspersed with ‘oh no, wrong again, I feel awful’. It just… didn’t …end.
It’s now September, that’s SIX MONTHS. So I’m going to list my ongoing struggles and symptoms here so you know that this is what a long hauler’s life can look like. With no knowledge or understanding of how long this might continue, or when it might end, that’s with a positive hopeful assumption clinging on that it will. Hopefully the science and treatment will catch up.
- I am in pain. Every day. Literally every bit of my body hurts, from my fingers to my toes. Muscles, joints, eyeballs. Some days I can walk around seemingly physically fit and able, others I can barely lift my arms. But always it hurts, everywhere. Today’s a day I’m struggling to walk. It varies.
- The fatigue is out of this world. It hits like a brick wall, and I’m ‘done’, I can’t do anything, literally. It’s like every last morsel of energy dribbles out of my toes and it’s all gone, blank, stuck, immovable. It’s also daily, constant, and I’ve learned – as chronic fatigue sufferers have to – to pace myself (mostly). To ‘ration out’ all efforts, all movements, all commitments. It’s a constant negotiation, every single thing I do. My thinking goes in circles like this; ouch this hurts, I need to move, how much effort and pain is it going to cost me to move, is it worth just staying this way for awhile longer until I can’t… until eventually I do have to move, then I’m stuck again in the same loop. The standing ‘joke’ I’ve been using is “If I fart, I need a two hour nap”… but it’s not terribly funny in reality.
- My eyeballs ache and sometimes hurt, like I got hit by a tennis ball in the eye (I remember that as a kid, and it fits). I get constant disturbance of vision. I used to get migraines, so I recognise it, but this isn’t migrainous because the head pain doesn’t arrive, it’s just the random disturbances of vision. Flickering, blank spots, random colours etc. However it does give me consistent headaches.
- I’ve had vertigo on and off, something I’ve never suffered before. I assumed it was just a bodily response to fear of heights or something. But no. Having ones own body suddenly and without warning, uncontrollably lurching into a wall (and unable to stop the lurch in that direction until it actually passes) when you least expect it, is quite shocking. Not to mention a few head bumps along the way.
- Often when I lay down the room is spinning, as if I had way too many drinks (I don’t) and have to stay super still just clinging on until it passes. Jerky, repeated, like a washing machine round and round. It just won’t stop… but eventually it does.
- I cannot bend down to picks things up, if I do, I get so dizzy I fall/almost fall over. The others are often lurching to catch me when that happens.
- Dizziness, randomly, from nothing and out of nowhere.
- Pins and needles. Now I thought I knew what those were, but these are on another level, they actually hurt. They come any time, anywhere on the body, for no apparent reason. Lately they’re mostly concentrated on my last two fingers and arm for some reason. All these things change and change again, over time.
- Paracosmia. Great word isn’t it? False smells. I randomly smell a ghastly chemical, petrol or paraffin like smell, nobody else can smell it, it hits me wherever and whenever it likes, can last minutes or hours. Thanks to my good ole GP a steroid nasal spray seems to be getting rid of that. Good, it was ghastly.
- I get brain fog. I always thought that was an odd expression, and never really knew what it meant. I guessed ‘fuzzy brain’ or ‘sleepy brain’… but no, once you’ve had it, you know what it actually feels like. It’s like someone pressed pause on your thinking ability and you can’t will it away and just go back to thinking. Like a short circuit. Dots don’t join the dots. Thankfully this is less frequent than other symptoms, or I think I’d have given up the ghost. I’d certainly not have been able to continue working. My ‘memory issues’ (I already had some) have got much worse.
- My digestive system wasn’t brilliant anyway (lifelong IBS), but the magnitude of symptoms in that department are now frankly ridiculous. Never a dull day, one way or t’other.
- Shortness of breath. Yeah. I was doing brilliantly with my COPD, rarely ever used ‘puffers’ any more. Now? My body is a limp noodle and any exertion – apart from resulting in total ‘crash’ of fatigue and a more hurty body – means I’m puffing and panting just walking to the kitchen and back.
- Muscle wastage, from lack of physical anything for 6 months. I even had an actual bedsore in the first few weeks.
- Cystitis, repeatedly, something else I’ve not suffered for many years.
- Red blood cell count – high. Didn’t mean much to me, but apparently it means my body is overworking at fighting, both for oxygen, and fighting off inflammation, germs, etc.
- My heart rate – high, which has always been pretty good (60-70) …has been consistently between 80 and 120 bpm ever since C19. Sat still, on waking, before sleep, no matter what. It hits 120 after a slow and steady shower and dress in the morning.
- Greater frequency of my heart arrhythmias.
- I was right, I’d forgotten tinnitus. Random, shocking and intense.
- …I can’t think of anything else right now, but I’m leaving this here, because I know I’ll remember something else in the next couple of days if/when it happens.
So yes. Long hauler. It’s a thing. It sucks arse. Not much else to say really… except, if you know someone who is telling you they’re still suffering weeks or months after C19? Believe them. Please.
Footnote 1: I’m still 100% grateful for my life, that I’m still here to tell the tale despite unlucky comorbidity, and that I’ve got frankly incredible support, a good home, friends and family, and for that? I’m genuinely the luckiest guy in town. I say again, I’m not writing this for sympathy, but as a matter of record for myself, and to maybe help someone else.
Footnote 2: I was not tested, because I avoided hospital admission and they were not testing anyone who wasn’t actually admitted in respiratory distress, in mid March. My GP, 111, and on another call the practice nurse all said yes, I have it. That’s good enough for me. I haven’t bothered with the antibodies test as 1. I know I’m medically rubbish at making antibodies (I’ve had chickenpox three times) and 2. the test have been shown to frankly prove very little; lots of positive tested C19 cases have come back negative for antibodies, and those tests are still at this point not reliable.