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Written for all those suffering with invisible illnesses.
LONG COVID MAN
Don’t fight the mental battle alone
I’ve put section 7 first because it’s the part that really matters.
Long Covid is as much a mental battle as it is a physical one. What many people also don’t realise, is that Covid can trigger underlying health conditions. I have no shame in saying that there were times in the last year that I felt suicidal. Exhaustion, seizures, chronic migraine and extreme anxiety dragged me to a darker place than I’d ever been before. It never got to the stage where I attempted self-harm. But, there was a time where I couldn’t stand on train platforms for the fear I might jump in front of one. The scariest thing of all, though, is that no one would know. There are many people out there in far poorer health than me with long Covid, and reports of Covid related suicides are becoming increasingly frequent. If you know anyone suffering with it, or any debilitating physical or mental health condition, reach out to them.
I had always been a member of the ‘you can basically laugh off anything’ school of thought when it came to mental health. That can be a helpful attitude for the minor things in life. But, when something serious comes along, the wheels come off. If you’re struggling, speak to a friend or parent. If you don’t want to discuss it with them, speak to a therapist or your GP. Health conditions don’t just make you ill, they turn your entire life upside down. You do not need to do it alone. And if you don’t want to tell people you’re going to therapy, you don’t have to.
Here is a list of things that might help if you’re struggling, or if you know someone who is.
Doing something is always better than doing nothing. Find ways to pass the time that aren’t Netflix and get out the house every day.
When you want to lock yourself away from the world, do the opposite.
If people don’t reach out to you, reach out to them. They always answer.
Social Media can be amazing and horrific in equal measure. Use it in the right way. If you’re addicted, delete it for 10 days.
You will drift from some people; that’s fine. Close friends are more important now anyway.
Lots of people won’t understand what you’re going through. A sober, 1 on 1 conversation might help them.
Do NOT feel embarrassed or guilty for ‘dragging down the mood.’
There will always be certain things you can’t talk about with certain people. You can talk to someone else about them. Therapy is better than alcohol and drugs.
Listen to music that makes you happy. And sing if you want to. Really loud.
Do what’s right for you and no one else.
You do not realise how vital you are. A long-term illness is extremely isolating, so check in regularly.
“How are you?” is NOT enough. Ask questions like; “How are you coping mentally? Is there anything you want to get off your chest? When can I come and see you?”
It’s likely that an ill person won’t feel well or comfortable enough to go to big events with lots of people. Make the effort to go and see them on their own or in smaller groups.
How it started
The backdrop for this story is that I moved to Madrid to work as an English teacher on December 9th 2020. I caught Covid 4 days in, and still haven’t recovered. This is an abbreviated version of what happened.
Walking for a coffee on a Sunday morning, I suddenly felt like my head was spinning. The ground beneath my feet started to move, and I had an overwhelming sense I was about to pass out. I struggled back home to bed, but the feeling of dizziness was going nowhere. The next day, I had to travel to Zaragoza for a training week. This week consisted of wave after wave of this sensation, increasing breathlessness, hypersensitivity to light, constant exhaustion and an extraordinarily volatile bowel. Oh, and I lost my luggage on the way there. I had picked up the wrong suitcase and, instead of my possessions, now had a bag containing a Spanish man’s dirty laundry.
On arriving back to Madrid, and resigned to never seeing my possessions again, my flatmates and I rummaged through the bag to see if it contained anything worth keeping. A bottle of Issey Miyake aftershave was found and I was urged to smell it, but I smelt nothing. We even sprayed it directly up my nose. Still nothing. My flatmates barricaded themselves in their respective rooms and I went for a Covid test. As expected, ‘Positivo.’
The worst night of my life, probably
So, I commenced my festive isolation in my box room, from 18th-28th December. My entire flat apart from one girl had left for Christmas, leaving me stuck in my room so that I didn’t infect her. My breathlessness, dizziness and sensitivity to light grew worse as the days progressed. If you haven’t experienced Covid fatigue and breathlessness, this is what it’s like: Imagine you have just walked up a steep hill. The extent to which you currently feel out of breath will remain for weeks. Now, here’s a rucksack containing bricks to carry. You will also feel like you are carrying this around. The harder you try to breath, the worse it gets. (One year on the fatigue and breathlessness is slowly improving, it just takes a long time.)
As the days progressed, more and more bizarre symptoms came to the fore. As I was falling asleep on the 26th, excruciating pins and needles appeared in my left foot. The sensation then travelled up my legs, which started to spasm uncontrollably. This wave of electricity would light up my whole body, causing it to tense up, and then finish with an intense electric shock in my ears. At the time, I had no idea what these were, and assumed they were some kind of anxiety attack. I would later find out that they were seizures.
Another uncomfortable sensation then reared its ugly head. The one when you’re asleep and you feel like you’re falling, then suddenly jerk awake. This started happening every time I lay down, even when I was awake. The jerks increased in frequency until they were happening every 5 minutes. I had totally lost control of my body. All I wanted to do was sleep, but getting there was nigh on impossible.
This quest for sleep wasn’t helped by the sounds emanating from the room next door. The other girl I lived with, who I barely knew, was making the most of the sexually liberating ‘free flat’. To make matters worse, our rooms were next to each other, and arranged so that we were headboard to headboard. And so, on Boxing day night I lay, struggling to breath, feeling like I was falling, having seizure after seizure listening to the crashing and clanging of the promiscuous percussion ensemble next door.
I was taken to hospital in an ambulance on the 27th but was discharged the same day after a lung X-ray showed no signs of pneumonia. Unfortunately, they were looking in the wrong place. They also slapped me with another 10 days isolation.
I only recently found out what was actually happening that night. Tests revealed that Covid had attacked my Vestibular system, the part of your inner ear that helps to control your balance. Alongside this, the nerve pain in my feet and legs along with the electric shock feeling in my head were localised seizures. The attack on my balance system was triggering an anxiety response (the falling jerk), and sending my brain into overdrive. This, in turn, was provoking a previously undetected brain haemorrhage, causing the seizures. Or something along those lines.
Into the scanner
Not wanting to lose my new job, I forced myself to work for 4 months in my condition. The constant dizziness, electric shock sensations, brain fog and exhaustion continued. As many of my symptoms were neurological, I was eventually referred for an MRI of my brain. If you haven’t had an MRI before, I wouldn’t recommend them. You essentially lie perfectly still in a loud, thin tube for 25 minutes. If you move, it lasts longer. After I had lain in the machine for 45 minutes, I was finally pulled out.
‘Have you ever had a large knock on the head?’ the radiologist asked me.
‘Well, yes, a couple of years ago I had an accident’. I replied.
“Right…well I’ll send the results to your neurologist, have a nice day”.
A little suspicious, I left the hospital and returned to work. Later that week, whilst walking into a lesson, I saw a message from my doctor:
“Dear Mr Bishop, unfortunately, the brain MRI came with signs of an acute passed haemorrhage. I will forward these results…”
Don’t fall through a roof
Rewind to Summer 2018. Remember, the one with the world cup and Dr Alex on Love Island. After taking a wrong turn walking home from a night out, a friend of mine (who shall remain nameless) decided we should clamber over a row of garages with iron corrugated rooves to the road we were supposed to be on. Moronically, we all decided to follow.
The next 10 seconds changed my life.
Halfway across, the section of the roof I was on collapsed. I fell 9ft, landing on the centre of my back, whacking the back of my head on the concrete floor.
My memory does not exist beyond this point, but I am told that I got up straight away and was acting normally. My friends rang 111 and checked on me throughout the night and I woke up the following day with a headache, agonising back pain and struggling to move. A spinal X-ray at A&E that afternoon showed no signs of a break, but a head scan was not done. Perhaps I downplayed the knock to my head to the doctor I saw, but I honestly cannot remember now. After months of no improvement in the back pain, I went for an MRI that identified crush fractures in my vertebrae. I live with chronic back pain now, which I have learned to deal with. I also counted myself incredibly lucky to get away with such minor injuries. It’s not until now that I’ve begun to understand the effect it had on me both psychologically and neurologically.
Epilepsy – isn’t that the flashy light thing?
Back to Spain then, and I now found myself sat in hospital waiting for another brain MRI, followed by a 24-hour epilepsy test. The MRI showed that the haemorrhage was in fact old, most likely from the roof incident 2 years prior. ‘Good news’, apparently. Old brain injuries, though, can be triggered years later by stress or illness leading to people developing a wide array of neurological conditions.
An epilepsy test is called an EEG. 32 electrodes are essentially superglued to your head and your brain activity is monitored for 24 hours. First, you’re made to do cognitive tasks (maths and reading) to see if your brain activity is being stimulated as it should be. Then, they test for photosensitive epilepsy. Most people think of epilepsy as ‘the flashy light thing’, where seizures are triggered by high frequency light. This, however, only accounts for 3% of epilepsy sufferers. This type of epilepsy must be identified or ruled out. So, to try and trigger a seizure, an LED strobe light is put in your face, and you’re made to stare into it while it flashes faster and faster. For ages. It’s horrific. But I passed! Thank God!
My celebrations were short-lived.
I slept overnight in the hospital with the 32 electrodes still glued to my head and in the morning was diagnosed with focal frontopolar epilepsy, triggered by Covid. (This means epilepsy in 1 part of your brain, where the haemorrhage is.) I had never really considered it, but all the strange things happening to my body had been seizures. 5 and a half months after I had arrived, it was time to leave Spain.
I’m still coming to terms with my epilepsy diagnosis. It’s a long-term condition that you must adjust to, which may or may not go away in time. As things stand, 1 year on, I’m still trying to find an anti-epileptic drug that works for me. The seizures are milder than they once were, but they’re certainly still happening. I normally have 1 every night as I’m falling asleep, and am woken by 1 or 2 of them in the morning. They neatly bookend my day. My legs rarely spasm now, it’s just the nerve pain and electric shock sensations in my ears. On the occasions I do something to provoke them, like exceeding my 2 drink limit or overexerting myself, they get worse. I can no longer drive, so I have to cycle everywhere, but I may get my license back eventually. The attack on my balance system has left me with balance issues and a permanent migraine which, hopefully, should improve over time.
Never give up
The months since returning from Spain have been the most mentally challenging of my life. Despite all the things that happened, it took me until October 2021 to cry. I’m not sure that’s normal. It’s definitely not healthy. My attitude until then had been to try and stay as positive as possible and look to see the funny side in everything. But the trauma of what had happened was consuming me, and I had to speak about it to someone. Mental strength is not hiding away, it’s allowing yourself to be vulnerable and not be embarrassed. My struggles with anxiety as I have lost my balance left me wanting to lock myself away. The further I drifted from the world, the worse I felt. So, I think mental strength isn’t just allowing yourself to be vulnerable. It’s being brave enough to do the things that feel terrifying. It’s always worth it.
Although I’ve not yet physically recovered from what Covid did to me, I now have a much healthier mindset to help me get through it. If you or your friends are facing the issues I’ve mentioned, or any mental or physical health conditions, I hope my list of recommendations helps.
Or if you want to contact me, DM me.
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My Covid Disaster: About
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