I feel like its finally time that I write my ‘recovery’ post — although I feel like this is something you can never really recover from in the sense that it kind of scars you for life. Bear with me on this as its going to be long and I’m going to go into a lot of detail as I feel its important that people can pick out what is relevant to them.
As of writing this 29th November 2023 I would say I am around 95% recovered in my long covid journey and I hope that gives you a lot of hope.
So, let’s begin. Its February 2020 and I had just been exploring London for the day with a friend and decided to get the tube back to the station at around 5pm. Huge mistake as obviously this is rush hour and we were packed into the carts like sardines. A few days later, I then get what I would say was the worst sore throat of my life. Nothing would shift this and subsequently went to my GP and had to get some antibiotics. I should also mention at this point that I am Type One Diabetic and have been since I was fourteen. I couldn’t get my blood sugar to drop so resorted to antibiotics to clear things up quicker — and it worked. At this point Coronavirus was floating around in the news and we were all concerned about what this would entail. About three weeks later I went on to develop a cough and the only reason I recall this is because I had written this in a journal and said how awful I had felt — this is important for later. We were then put into the first lockdown.
A few months pass and during this time I felt odd. I was mentally thriving. I felt like I was back on summer holidays from school again. I was going on long walks with the dog and partaking in the many hobbies I had put off for lack of time. However, I felt different physically. I had this strange dizziness that would come and go, my head felt cloudy and when I would be shopping in the supermarket with my mum, nothing seemed real and I’d have to lean on the trolley for support as I felt like I was going to faint. Weird. And stupidly I ignored these symptoms as I have always been somebody who brushes things off and because it wasn’t permanently happening, I didn’t think too deeply into it. Then I had the first ‘episode’ we’ll call it, where I was abruptly woken up from my sleep in a cold sweat, my stomach was making the most insane noises and pain and I ran to the bathroom where suddenly my vision went green and blurry I went extremely hot and cold and I then proceeded to vomit — I then crawled along to my parents bedroom and started asking for help and I can recall myself saying ‘I think I’m having a panic attack’ — which at this point I’d never had before but something about it felt like my body was severely anxious. Anyway, cut to the morning, the stomach pain was still there and I decided to blame this on a dodgy burger I had eaten the night before and swore myself off of burgers for the foreseeable.
Cut now to late October 2020 Covid hits our household and surprisingly I felt pretty normal. I’d say I’ve had worse colds, my only gripe was the lack of taste and smell, so I couldn’t enjoy any of my dinners as they tasted like I was chewing on cardboard (sorry Dad). The following week everyone recovers but I’m still lacking my sense of taste and smell. I feel weird but drag myself into work since we had just reopened the same week that we didn’t have to self-isolate anymore. A week or so passes at work and I then have another ‘episode’ like I did in the summer. I call in sick from work for the following day but then come back in and as soon as I got to work, I had chest pains, I could barely stand up and I was just feeling awful. I went back home and booked a GP appointment and he took my blood to test for the generic diabetes issues i.e. kidney and thyroid which both came back normal. At this point I don’t correlate any of these issues with having Covid, I’d always just had an illness and recovered from it so it didn’t even cross my mind that it was all connected. We then went back into another lockdown. From this point on I was spiralling. I started to get worse and worse. I couldn’t sleep, I had no appetite and when I would have a bath, I couldn’t lay down as I physically didn’t have the energy to pull myself back up again. I was constantly shaking and my legs felt so weak I could barely stand up. I was scared to sleep with my bedroom door closed in case something happened to me in the night and nobody could hear me or get to me.
We went up to A&E a total of four times. The first time I was told I had heartburn and was given omeprazole. The next two times I was on a drip in the waiting room as the NHS was on its knees at this point and there were no beds. They constantly checked me for ketones (where your body doesn’t have enough insulin to allow your blood sugar into your cells leading to a build-up of blood sugars) which I was showing, I found this odd as I didn’t have an active infection and I also had well controlled blood sugar. I felt like they were kind of implying that I had done this to myself — one of the doctors told me that I should exercise to get rid of my diabetes and that I was overweight which, at this point, I was losing weight pretty quickly and at 58kg and 174cm I didn’t have this weight to lose. The final time I was taken into triage and stayed overnight — they were throwing around the word gastroparesis and then gave me anti-nausea tablets. My diabetes clinic nurse came to see me and she said she didn’t think it was gastroparesis and she wanted to test me for Celiac and Addison’s disease (where your body stops producing cortisol). The Addison’s disease blood test (which was taken at night when cortisol levels are at their lowest) came back with lowish cortisol and I was given steroids to take just in case whilst we waited for a Synacthen test (where they inject you with a stress hormone to see how much cortisol you produce) to show whether or not this could be my answer.
At this stage it’s a few weeks into the new year and the day after the Synacthen test I had another ‘episode’. At this point whilst waiting for answers I was still exploring other avenues and got my GP to run a full stool sample test to see if I had H.Pylori or anything of that nature just to rule it out. My symptoms were still spiralling and I was getting worse mentally and I was crying all day every day, to the point where my hair started growing in with no colour from the stress. This will be hard for friends and family to read but I must be honest and say I was extremely suicidal. To the point where I was borderline psychotic. I would look at myself in the mirror and I didn’t recognise myself. What the hell is happening to me? I was just praying and begging to God that he would end my suffering and he would let me die. I was trying my hardest to hold on but nothing was going anywhere. My synacthen test came back and it was normal, my cortisol was even on the high end. I stopped the steroids; I was weirdly disappointed as I just wanted an answer.
My diet at this time was bad. I had cut out so much food for fear of them giving me symptoms. I ate no sugar at all, I cut out all gluten and dairy and every dinner I ate was plain. Fish or chicken and potato with veg. Every day. For months. No seasoning or sauces or anything. At this point I was eating purely for sustenance and I had no joy out of it. I had no appetite and would look at the clock and eat when it got to the right time. I made smoothies from spinach blueberries and mandarins just to try and get some vitamins in me. Eating was a chore as my entire digestive system was completely haywire, constantly glugging and making weird noises. I had severe heartburn like pains and cramping constantly and I had to sleep sitting up. At this point I was so frail that I could only make it from my bed to the sofa and I would wait until the very last minute to go upstairs to use the bathroom because my legs were so weak.
I had an appointment in my diabetes clinic (which I cried all the way through) and my endocrinologist took a list of my symptoms and narrowed it down to what he thought might be happening to me. He prescribed me a low dose of Amitriptyline to help me sleep and a low dose of Propranolol for my high heart rate. I got home and took the Amitriptyline and it was my first full night’s sleep in months. Before this I was sleeping maybe 4 broken hours a night at the most. I would look at the clock and be counting the minutes. I had always been a great sleeper before this so it was completely new territory for me. The night after I had yet another ‘episode’. What the fuck? Why does this keep happening? After this, things stagnated for a while, I was still bad but at least I was sleeping now. One night lying in bed my heart rate shot up to 177bpm. This was the first time I had to use propranolol and it seemed to work enough so I could sleep. Thank God.
I started taking probiotics and a variety of different vitamins as I definitely wasn’t getting any from my diet. My GP referred me to a gastroenterologist but the NHS waiting list was backlogged so I went for a private consultation where I explained all of my symptoms and I was told that I should stop eating onions. £150 on a consultation to be told to stop eating onions. Ludicrous. He also said from my previous stool samples that there was no sign of IBD so at least that was another thing to rule out. My dietician from the diabetes clinic called me and said all my samples came back clear and that I needed to start broadening my diet as I was not getting a lot of nutrition so I started trying to eat more protein and went back to eating dairy.
To go along with all of my other symptoms another awful one was feeling like I was hypoglycaemic constantly. I was shaking all the time like I would with low blood sugar but when checking it was normal. This was stressing me out more because this wasn’t something I could ignore, I had to keep checking my blood sugar just to make sure I wasn’t low and my fingers were being bruised to shreds. I started to google the mechanisms of hypoglycaemia and it turns out that when your blood sugar drops, your body secretes adrenaline. Was the feeling that I was feeling constant adrenaline? The more research I did the more I realised that this could be the cause of all of my symptoms, however I had never had anxiety or panic before. I’d always been a nervous child but for reasonable things like exams or appointments, never just out of the blue. My GP even tested me for an adrenal tumour which thankfully came back negative.
When researching I came across Long Covid. Holy shit. My Mum had mentioned this to me whilst trying to find a cause for everything but I had brushed it off as this was happening in the summer before I got covid? Right? Wrong. I went back to my journal and looked at the dates, because as I have written at the start of this, I had severe tonsilitis which kind of overshadowed the other illness I had caught. I had completely forgotten that I had an illness a few weeks after I had tonsillitis, which now looking back, clearly that was Covid. I got an appointment with my GP immediately and they agreed that we have finally got to the end of the digging and that I have Long Covid. The answer though? Time. And potentially the vaccine could help me. That’s all they could offer me for advice. I booked in for the vaccine and had a flu like reaction to it but was back to my baseline in a few days.
I scanned the internet constantly for answers on Long Covid and came across a page on Reddit that was full of people going through long covid which I proceeded to doom scroll on for weeks and made my mental health worse. Am I seriously stuck like this? A lot of people were understandably very negative and it was clasping onto me as well. I decided to take myself off of the internet and started to take the route of trying to calm my body down to lower my adrenaline and cortisol levels.
At this point lockdown had ended and I had to go back to work. At work I was completely zombified. I would be hunched over the counter and regular customers that I had built up rapport with previously, I could barely look at. I had to keep running off of the shop floor to calm myself down and breathe through the symptoms. As awful as this was for me, I didn’t realise at the time this was a good thing as it gave me a slight distraction from constantly thinking about being unwell. Still, I couldn’t watch anything that would make me feel any sort of emotion. If I put anything on the tv it had to be boring, as anything that would spike my adrenaline made my symptoms amplify on a massive scale. In this time, I also had a 24hr heart rate monitor and the results came back high and I was told to stay on the propranolol as long as I felt I needed it.
My Mum bought me a book called Claire Weekes: Self help for your nerves. I want to preface this by saying that this is not anxiety and I don’t want anybody reading this to think that Long Covid is something as ‘simple’ as curing an anxiety disorder. However, the book had the right idea. She was straight to the point and said that your body was misfiring nerve signals which was causing more adrenaline which in turn is causing this multitude of symptoms. I had also read a post on Reddit from somebody who had recovered from MERS and she talked about being stuck in fight or flight after her infection. I followed her post religiously — I bought the supplements she had suggested (ashwagandha and magnesium) and started eating more fruits and vegetables and keeping my diet completely clean. She also suggested meditating so I downloaded the Headspace app and got into a routine of doing 20 minutes morning and night. My first session meditating I laughed. This is so stupid. But as I continued doing it, I started to see progress.
Months pass and I’m still meditating and I’m having better days. Until my cat who I’ve had for over half of my life gets ill and I have to go into the vets alone put him down. I don’t think I’ve ever experienced a pain like that before in my life. The night after I was a complete wreck and not sure I stopped crying to even breathe. The next night I then had an ‘episode’ again. What the fuck? I thought I was over this by now. I then looked back at all of the times this happened previously and tried to find a correlation between them all. Every time this had happened, I had been through something that had put stress on my body. The first two times it was a covid infection, the third time it was from my synacthen test, the fourth from crying so much at my hospital appointment and the fifth from my childhood pet dying. Every time this happened, my body had gone through a severe bout of stress. From this moment on I shut my feelings off to everything negative. I didn’t interact with anyone who would bring my vibration down even further. I started to watch funny videos to retrain my brain that it was safe to laugh and that I was safe to turn off my fight or flight mechanism.
Over time I got better and better and eventually was able to take on more hours at work. I was able to test the waters and eat the nice things that I wanted to again. I was able to take my dog out for a walk which I never thought I’d ever be able to do again at the beginning of this journey. I took up learning how to crochet and would play a podcast in the background to take my mind off of things for a few hours. I was finally able to tidy my bedroom again, I was able to go out for the day with my friend. I was finally getting somewhere with this. I’m not going to lie and say this didn’t take long because it did. It took months and months to get to this point but I did it and now I’m here and able to tell my story.
I’m still masking in public obviously. I have had people cough in my face when I walk past them in the streets. I have people shout at me and sneer when I pass by them. At work customers question me and try to mock me, and when I respond that I’m chronically ill they become sheepish. I’ve become pretty good at confrontation now I can control my emotions and don’t mind calling someone a c*nt when they deserve it. I think people have lost their kindness towards others and a lot of people have been sucked in to the media saying covid isn’t a big deal when it is. I only read today that it’s a 1 in 10 chance of getting long covid and this increases with each infection. Obviously, I was unlucky and got it the first time around. I’m obviously not glad to have had long covid but I’m glad that I’ve learned this lesson so early in my life. I am grateful for everything. If I’m out with my dog and he gets mud all over my trousers, who cares? I get caught in the pouring rain on my way home with no umbrella, so what?
To round this off and briefly summarise, here is a list of my symptoms that I can remember:
Extreme Anxiety and Panic — Headaches — Nausea — Heat Intolerance — Internal Vibrations — Fatigue — High Heart Rate — No Appetite — Digestive Issues — Dizziness — Shaking — Insomnia — Chest Pains — Leg Weakness — Low Mood
And here are the things that I think helped me the most:
Meditating — This is key. You must calm down your nervous system. I would imagine as I breathed in a wave of light passing over my body and as I breathed out it would recede into me as if it was healing me and it taught my brain to stay calm.
Eating well — I would eat brown bread toast for breakfast in the mornings, followed by a selection of around 4–5 of these: banana, blueberries, pomegranate, strawberries, mangos, apples, boiled eggs, nuts, cucumber, celery and babybel or yoghurt for lunch. I would then have plain fish or chicken with mash potato, carrots and broccoli in the winter and in the summer, I was eating lettuce, cucumber, tomatoes, beetroot topped with either ham, chicken or prawns for my dinner. On the really bad days I would have a bowl of porridge for dinner (which I am now sick of the sight of). Now I can eat whatever I want to, I think you just need to do this to set yourself back to baseline.
Supplements / Medication — Obviously I am not a doctor so please do your research before taking these supplements. I took L-Theanine at the start of this journey as I read that it’s meant to help lift your mood and relieve stress. I then stopped this and went on to ashwagandha and magnesium which I took at night to help me sleep once I’d weaned myself off of the amitriptyline. I took Propranolol for my high heart rate. I took CBD oil for a while but not sure if this did anything and is quite expensive. I took a Probiotic every day and still continue to take this. I also took a multivitamin, B Complex and vitamin D. I took iron to raise my ferritin levels to over 100.
Laughter — I think its really important to make yourself laugh every day as this is showing your brain that its safe and it can stop reacting like it is in danger and helps to turn the switch off.
I would like to preface that I know this won’t work for everybody but if you have the same or some of the symptoms I have I think this could be beneficial to you. I am 95% recovered and the 5% is when I get a few niggles of symptoms before my period, which I’m sure is just hormonal and I’m now hyperaware of my body so I notice it more. I did breathwork, I tried cold showers and it was awful but kind of thrilling, I read the book The Way Out by Alan Gordon and Alon Ziv and to be honest it did help me in some way so might be worth looking into although obviously I don’t believe this is all in your head.
I put off writing this for so long in fear of reliving it and jinxing myself or something but I hope you have found some comfort in this. I couldn’t even leave the house at the beginning of this and today I got back from a walk alone with the dog which I never would have dreamed of back then. Nobody knew I was going through this unless they were close to me. I continued to post on Instagram when I had good days and when I had bad ones, I avoided my phone like the plague, so sorry if you’re finding out about it this way. But it’s also a good reminder that not everything you see on social media is real. But I’m okay now and if you’re suffering the same thing then just know that one day you will be okay too.
