MyLife inside the Long Covid Hell Hole and how I got out (ish)

(please note: this will take you around 15 mins to read which might seem long but had to pack a lot in so hopefully you’ll stick with it..or just look at the disturbing drawings if you’re in a hurry…you’ll get the gist.

So feel like I should explain why exactly I slipped off the face of the earth for most of last year but I also need to unravel the experience for myself. So I had at the start of May 2021, what can only be described as a total system collapse. Both my brain and my body simultaneously ceased to function. What did that leave me with you might ask? Not a whole lot. Without warning I was suddenly unable to do anything at all.

Well, to be fair, I’d had some warning. I’d been suffering with Long Covid (L.C) since March 2020 and in the 6 months leading up to that moment I had been through a series of major relapses but didn’t realise that each time I was getting pushed further and further back until one day I fell into a very deep dark hole from which I could not escape.

Obviously it wasn’t an actual hole, I didn’t fall in the sewer or anything, I had developed full blown Chronic Fatigue Syndrome (CFS or M.E as it also known) which is basically a post viral condition which can develop when your body fails to successfully defeat an invading virus. My nervous system essentially shut down, battered from a long, drawn out war with Covid from which it was not triumphant. Clearly a poor loser.

What research has now shown is that if Covid is not beaten in the initial stages it spreads throughout your entire body and fucks shit up wherever it goes. It’s like getting in dodgy builders who go in and wreck the place. It attacks all your organs, joints & muscles, creating inflammation and micro blood clots which, in turn, prevents oxygen getting to where it needs to get to and all of this creates the multitude of symptoms that people are now suffering from.

The most common symptom is chronic fatigue. For every day I had maybe around 15 minutes of energy which I had to somehow stretch across a 24hr period. Basically impossible. If I tried to do something, however menial, I would have a ‘wipeout’ after and pass out. Make some toast, half hour to recover. Wash my hair. 2 hours to recover. Walk to the end of my street (its a very short street)…3 hrs to recover. When I had spent my daily allocation I was like an electrical device who’s plug had been pulled. I just stopped working.

For me, on top of the debilitating fatigue, came a permanent headache, shortness of breath, dizziness and thick impenetrable brain fog. My mind just didn’t work anymore. Zero ability to focus or concentrate even for a moment. I couldn’t read one line of an article without being instantly exhausted. Even talking to people on the phone for more than 10 minutes was more than my fogged-up-fucked-up brain could handle. The black mist would descend and that would be that. I would then be barely able to string a sentence together and struggled to find even the most basic words. This, for the record, is from someone who previously could’ve talked the hind legs, front legs, eyes, nose and ears off a donkey and suddenly I’m as punchy as a duffed up old boxer who’s taken one too many hits to the head.

When speech is hard and instantly exhausting , you seriously consider the merit of what you are about to say and if it is worth it. Consequently every observation, every joke, every bit of banter, every gripe. none of them make it past your lips. Why? Cos it turns out most things aren’t worth saying, who knew?

And so I joined the millions upon millions of sufferers around the world, who had previously been fully functional human beings with active lives, who were now trapped, both inside their homes and inside their bodies, forced to watch helplessly as their existence ground to a halt. We all becameThe Unfunctionals, who let’s be honest, would be a pretty shit bunch of Superheroes. Superskills: None. Basic skills: None. (see Minimal Man below)

When you get CFS, you effectively stop producing mitochondria which provide the energy for all your cells. Try running an engine with barely a drop of petrol. As a result you have a massively reduced capacity for activity and even the most basic of functions become ridiculously hard. If i moved too fast it was a problem, just turning around at a normal velocity would send my head spinning. Even if i just scrolled on my phone too rapidly or sat up a bit quick I would get vertigo. So I had to learn to do everything in virtual slow motion.

I could walk very short distances but only if I did the old person shuffle. It would take me half an hour to do a distance that would have taken me 5 minutes before. For someone that had always done everything at full pelt it was hard adjusting to living at a snail’s pace. And if I accidentally did something at normal speed I would crash shortly after. (not actually crash obvs, I certainly wasn’t going fast enough to collide with anything)

If I spoke too loudly it was a problem, very tough for someone who can only be politely described as having ‘a voice that carries’. If I got wound up about something, a frequent occurrence in my normal state, it wrecked havoc on me. And if I got my heart rate up or tried anything physical it would have dire consequences. It was as if this illness had been tailor made to fuck with me as much as possible. And so I had to give in to it. I had to succumb. I had no choice.

All I could do all day was lie on the sofa and stare into space feeling horrendous and utterly drained. It was basically like having the worst hangover of your life every single day, only minus the fun bit that got you there in the first place. I spent most of my time in the foetal position ironically wishing I’d never been born.

And so I waited. And waited. And waited. Just like the people queuing in the photos this week. (ah, now it makes sense you say…finally!) All the shots were actually taken just before my life was put on permanent pause. The world moved on but I didn’t. For the first time in my life I had to watch from the sidelines, no longer an active participant. I was alive but I wasn’t living.

Days, weeks and months passed with no let up. I would have occasional fleeting moments of feeling vaguely ok but they would disintegrate minutes later from the slightest activity and I would then be laid up again feeling utterly shite. I got through these endless days of nothingness by listening to music as it was literally the only thing I could do. I especially would like to thank Mr Fine Wine, Diddy Wah, Terry Brown’s Studio 1 Spotify playlist and the soundtrack to “Can you ever forgive me?”, all of which I listened to daily and they kept my spirits up. Music saves the day once again.

When all you do is nothing, you become nothing. You start to lose the essence of who you are. I couldn’t be me because everything that defined me I was unable to do. You start to mourn the person you were, the one you fear will never return. I couldn’t even be the same personality because that took more energy than I had. Too chatty, too animated, too enthusiastic and too angry by far. I had to let that version of me go and just hoped that one day he would return down the line. I had to instead create another persona, one that was happy being at home all the time, that didn’t get excited about anything, didn’t get worked up, didn’t try to be funny. I had to deliberately dial myself down to survive. Life with a limiter and restraining bolts attached.

As a person I used to have a relentless amount of energy, almost too much. And now I was running a deficit. If I exceeded my daily energy budget, which was most of the time as I had so little to play with, it would take me days, even weeks to recuperate. The human equivalent of an old phone battery that takes ages to charge and then lasts about 15 minutes before dying. In my previous life I used to smoke a ton of weed every evening to take the edge off so I wouldn’t be climbing the walls. I was actively de-energising myself on a daily basis & it never really dawned on me that our own energy is not only finite, but a very precious commodity not to be squandered. I won’t take that for granted again.

Even though my fatigue was all encompassing the worst bit for me however was losing my cognitive ability. I have never had a particularly strong body (I’m a thinker not a fighter yeah) but I had a decent brain. It was very fast and very active and then all of a sudden, all my brain cells went on strike. Where an abundance of thoughts and ideas used to zip around my head there was now barely a spark. Having had an overly busy mind all my life it was , in all honesty, almost a relief to have it quiet in there for once but it was also relatively scary.

This last year has been brutal to say the least and have endured an ever-flowing stream of shite I never thought I would’ve been able to cope with. And then just when I thought I ‘d hit rock bottom I found there was further levels of hideousness I could fall to. Because I was immobile for so long I developed a frozen shoulder which gave me intense and unrelenting pain. And then the exercises I was given to help it caused the rest of my back & neck to seize up and then I couldn’t stand up, sit up or lie down (yep, that’s all of ’em) without being in agony. And so my physio bound me in zinc tape to hold me together and it caused a 1 in a 1000 allergic reaction and burnt a hole clean through several layers of my skin..I mean, come on! WTF do you want from me??

And yet somehow the shittier things got the more resolve I developed, the more resilient I became, the more determined I was to get better. And so the old saying ‘what doesn’t kill you makes you stronger’ was, it turns out, true. I am also a really obstinate bastard and refused to accept that this was now gonna be lot in life. Fuck that.

And so I did anything and everything I could to get better. Anytime I was recommended whatever by whoever under the vague promise it might help I got on it. There was also no real proof out there at the time what would actually improve the condition as they still didn’t know what was causing it so I just tried the lot. No matter what. I simply put my scepticism to one side and just got stuck in. What did I have to lose? I was desperate.

Here are just some of the things I tried..

Acupuncture

kato diet

low histamine diet

breathing exercises

cold showers

fasting

earthing

vagus nerve stimulation

himalayan sea salt nasal pipe

hyperthalmic oxygen chamber

Infra red heat therapy

Industrial quantities of ginger and tumeric

Nervous system reset through cranial stimulation

Hallucinogenic Toad poison inhalation

Yes you read the last one right. I did smoke crystallised poison from the hallucinogenic bufo alavares toad out of a glass pipe. I shit you not. Did it help? Umm, for me, not really. I just dribbled a lot and saw some mad kaleidoscopic shit but it has helped people I know. On top of all that I popped every single vitamin, supplement & herbal concoction under the sun. (Macca powder/mushroom complex/Magnesium/NAC/L-carnite/Mitoq/ION gut/Inflaquell) to name just a few. Did any of it help? It’s so difficult to say. You’re taking so much at once it’s virtually impossible to know what is working and what is not so you just keep going with everything just in case.

To be honest if someone had said eat fermented prawn penis (do they have penises? No idea) or wipe my face in otter excrement I probably would’ve given it a whirl. And yet it was only after I saw a cranial osteopath called Frederick Roscop that my condition improved . I don’t know what the fuck he did but he got me off the floor and my slow road to recovery began. I also signed up with a nutritional clinic (Optimum) that specialises in CFS and they got my body functioning again with a specific supplement and nutrition programme. And then I was recommended a cranio sacral therapist called Katie Scott (thanks Ruth!) who sufficiently calmed my nervous system down from its permanent stress state to allow it to have the capacity to start healing itself. Again, don’t ask me how it works, have no idea, but it was a key component to me getting better.

The main reason I had to go down the ‘alternative route’ is because the NHS weren’t really offering anything at all. Well actually, no they were but it was utterly utterly pointless as I was to find out. After much persistence I was finally referred to a Long Covid clinic in July and my first appointment came through almost six months later on December 22nd! When I eventually went there it was a joke. Just one big tick boxing exercise. I was assessed by four different consultants (doctor/psychologist/physiotherapist/behavioural therapist) and it involved me explaining to each one my symptoms and experience. And that was basically it.

The Doctor just took notes. No explanation. No advise. No treatment program. The psychologist suggested I should go on a mindfulness course even though I told him I already meditated and the physio said I should take up swimming even though i had literally just explained to her that exercise made my symptoms worse. The behavioural therapist then gave me a test to establish how severe my brain fog was and proceeded to help me with the answers. Since I attended the only follow up I have had is a letter from the doctor to confirm that I have Long Covid. No shit! Cheers for that. Oh and I also got sent a link to a breathing video tutorial which is actually for asthma and was made in the 70s. It was like a bad comedy sketch but I wasn’t really laughing.

It’s not entirely the NHS’s fault. There is still no consensus on any treatment that has been 100% proven to work but if I had just been patiently waiting for that appointment I would have no doubt been pushed over the brink of despair afterwards it as it offered nothing but disappointment.

I am really not telling you all this for sympathy but to highlight the plight of those now suffering with L.C and also with CFS. Both have been misdiagnosed as a psychological disorder by doctors who dismissed them before even attempting to understand them. They gaslighted their patients and made them feel it was all in their head which only added to their suffering & misery. Shame on those who did. I feel so sorry for those poor fuckers who suffered with CFS/ME for decades who, only now, are being finally listened to because of the mass global event that is L.C

For weeks during the peak of this last wave there was an average of more than 100,000 new Covid cases a day in U.K which means that every single day 20,000 people might go on to develop L.C (the stat is around 1 in 5 people). Each of those 20,000, will then have their world turned upside down through no fault of their own. There is no rhyme or reason to who gets affected and who doesn’t. It’s a DNA dice roll. Some pre-disposed genetic trait you could never have known was there. It has nothing to do with health or age as people of all fitness levels and generations get it. If you are one of the unlucky ones your entire life will be upended and it can last from 6 weeks to almost 2 years and counting. I am still counting.

And despite L.C affecting a gargantuan amount of people worldwide, possibly up to 100 million, we are still only a minority in our respective countries. And as the majority aren’t really affected life goes on. As long as the boat is kept afloat in the storm we have to accept we’re gonna lose a few overboard. (can’t beat a nautical analogy). Fair enough. That’s the way human societies have always work. When did they ever really give a shit about the minority? Truth is 80% of you will be totally fine. 20% will experience a living hell. Caught in the Covid crossfire. Collateral damage. Soz and all that.

And as it’s only happening to a small fraction of those who get it, governments around the world are still not including it as part of the official Covid narrative, despite the now heavily documented evidence that there is way more to this virus than the initial infection. This is simply because if they did, they would have to admit it’s potentially more dangerous and debilitating than they are currently stating. And they would also be liable. To date L.C is still not officially recognised and you still can’t get disability benefit for it despite it being utterly disabling.

And the U.K government, who have just lifted all restrictions despite the ongoing Omicron shitshow, clearly do not give two fucks how many people this happens to and who’s life they throw into abject misery. And they probably bank of the fact that, as a community, we won’t kick up much of a fuss because it’s tough to fight for your rights when you are exhausted most of the time.

In the last month or so I have massively picked up. I definitely got a boost from the umm booster shot which I think gave my body the tools to get rid of any remnants of the virus that was still lurking inside me and yet, although I am considerably better, I still can’t do a whole lot. I am out of the swamp but not out of the woods. I still have a very limited amount of energy, I still have a pretty much permanent headache and my joints and muscles still ache like an old person’s so I am still in prison to an extent…I’ve just been transferred to a nicer one with a slightly bigger cell, outdoor access and visiting rights.

But I can actually do stuff again as oppose to nothing so that is obviously a huge improvement. I got my brain back which I am delighted about but I really have to pace myself and not overdo it. So I do roughly 20minutes on, 20 minutes off. If I do two consecutive things, I still get wiped out. So now I have to stop-watch the shit out of my life. It’s beyond a drag but it does allow me to be vaguely functional although my previous existence still currently eludes me.

I am not quite fit enough yet to go back to work full time and do all the things I used to do. Socialising for too long is still a problem and it’s almost impossible to make plans with anyone as I never know quite how I am going to feel. I’m kind of in a holding bay, in between the hell I have just left and the heaven that is normal life. And no, I never thought I would ever say normal life is heaven but compared to where I have come from it is a veritable paradise, a place I never want to leave again.

This is not for the feint-hearted. You have to be mentally strong to endure the endless knockbacks and lack of progress. You go to some very dark places indeed as hope is slowly whittled away by the passage of time. The toughest thing is that you never know how far down the tunnel you are as you do not go in a forward direction. It’s a lot of back n forth. The virus gaslights you because you think you are getting better and then you suddenly plummit and then you berate yourself for deluding yourself you were improving. It’s crazy making shit.

But I was lucky. I didn’t have to go through it on my own. I can only imagine how tough that is. I had the love and support of a beautiful caring woman as well as my family and friends but many will not be so fortunate. If you go onto any of the L.C support groups online you will find a melting pot of misery from those suffering in isolation or with families/partners who don’t understand and it is heartbreaking to read their stories.

If you want to get a genuine insight into the scale and severity of those affected by L.C go to this website called “The hidden voices of Long Covid” by Jasmine Hayer who is a relentless campaigner for L.C and despite being severely debilitated by it, she is still doing everything she can to get our stories heard and to further research. She was fuelled by the indifference of doctors who felt the need to dismiss her extreme symptoms as anxiety because nothing was showing up in the regular tests and who refused to accept that this was something utterly new which required new methods of detection and treatment. Her resilience and persistence also really kept me going as she was enduring way worse than me, as are so many other Long Haulers and I wish everyone who is suffering with this total fucker of an illness all the strength in the world.

And so that is my sorry saga. As I have done this blog for almost a decade and this is the first time I have ever had to stop, it seemed only fitting I give you an explanation as to why. I am also sharing this so I can hopefully close this chapter and move on. I really don ‘t want to be defined by this illness any longer. I have to believe there is life beyond it. I also wanted to show the reality of living with Long Covid and how it can destroy everything you are and everything you do. I did not lose my life to it but my life was taken from me and now I have to try and claw it back.

Not being able to continue my work was possibly the hardest thing for me. I think it was Ingmar Bergman who said that “if i do not create I do not exist” and I’m with Ingmar. My entire adult life I’ve always worked on multiple creative projects. They have always given me focus and purpose and I am lost without them. I hope now that I can continue doing this but if i disappear again at least you know what happened…

Is there a moral to this story? I don’t believe in fate or that I somehow manifested it and I really don’t think I deserved it although I did have a truckload of fun in the last 20 years so maybe this was payback? Seems harsh. I actually think it was just chaos in action. I was trundling along, like every other poor fucker that got hit with this thing, and then we all just got side-swiped. No different to a fly buzzing around before getting swatted. I would like to say that this experience has given me perspective and taught me to appreciate things but I was already of the opinion that life was beautiful, fragile, finite and fleeting and every second should be soaked up and savoured so I didn’t really need the life lesson but I guess there’s no harm to be reminded of that…