Yes some people are still wearing masks. Not many but I am one of them. This week marks the 4th anniversary since I got Covid and I have been sick ever since. A year in I developed full blown CFS and since then I had 3 or 4 partial recoveries only to relapse further each time. Last year rendered me housebound as my condition continued to deteriorate sending deeper and deeper into the chronic illness hole. And the more I tried to burrow out the further down it sent me, each new depth of hell more horrendous than the last. Bummer huh? Well don’t worry, it gets cheerier..
I tried everything under the sun to get better. And nothing worked. I was starting to give up hope of ever recovering and had become a physical, mental and emotional mess. I lived in fear of doing anything because everything caused my symptoms to flare up. It was pretty grim. And then in October I joined a program called CFS recovery which treats Long covid/M.E/CFS as a hypersensitive nervous system issue and through brain retraining they teach you how to regulate your nervous system which has essentially got stuck in survival mode. In an attempt to keep you safe your brain has signalled the body to shut down and stop you from doing anything. It is not your body attacking you. It is in fact your brain in over-protective mode. It is ultimately an act of love. Ahh, bless.
It’s a shame it’s been such a friggin ball ache as have found it utterly fascinating. And here comes the sciency bit..
Basically you have to convince your brain you are not in danger by not responding with fear and panic to the symptoms that it is actually generating. It’s a difficult thing to get your head around. No wonder it’s such a misunderstood condition. And the symptoms aren’t psychosomatic, they’re very real indeed . The nervous system is in control of most of our bodily functions and when it thinks it’s under attack it renders anything it considers non-essential inoperable. It doesn’t care if it makes your suffer, it doesn’t care if it makes you unhappy. It doesn’t care if you can’t work or see your friends. It just has one mission: to keep you alive and it does not care about anything else.
After a long period of reconditioning your brain you create new neural pathways and it eventually signals the nervous system to come out of fight or flight. This process can take anything between months and years and you have to go through multiple “progress cycles” where your symptoms flare up even more and you have to pull back activity whilst your nervous system recalibrates. It’s completely nuts how it works but it does work.
Since I joined this programme I have gone from being couchbound and unable to do even the most basic things to walking 40 minutes a day. I can socialise again and am back on public transport. I am a long way from being able to live a normal life and there will be lot of ups and downs ahead but eventually I will be fully recovered. So what will I do then?
I can now see my life as I previously lived it was completely unsustainable and I probably would’ve always crashed and burned at some point. Covid pushed me over the edge but it possibly also saved my life and that is the way I am now choosing to see it.
There are specific types of people that get disregulated nervous system disorders. They call them Type A personalities. Perfectionists. People pleasers. People that push themselves till they break. I was one of those people. I only ever stopped when I hit the wall and before that I was always running around like a blue arsed fly. It was exciting but utterly exhausting. And no, flies don’t run. They fly. Obvs.
So even though I had been desperate to return to my previous existence I can now see how unhealthy it was and I now wish for something else. I am for the first time looking forwards instead of backwards. But that is because I now have hope. Thanks to this program I can now see a life ahead of all of this. And I can now see that this will make me a more resilient person than I ever was. Chronic illness will make you weaker but it will also make you stronger.
I know it might not sound like it but I am one of the lucky ones. I found a treatment that is working but I am just one of 65 million worldwide dealing with this debilitating condition and many of them are suffering without help or hope. It was long covid awareness last week, which ironically no-one who didn’t have it would’ve noticed. We are all the forgotten casualties of a war everyone thinks is over but please spare a thought for those who are still on the battlefield, fighting to get their lives back.
It is Long Covid Awareness Day today. The first of its kind. Like hundreds of thousands of others in this country alone I have been battling with it for 3 straight years. And yes, just as the name says..it has been fucking long and it’s still not over. For some of us it is the war that just won’t end. For most people Covid is almost considered a thing of the past and have moved on but we got left behind. No fault of our own. That’s just the hand we got dealt and we are now trying to negotiate this debilitating condition that forces you to exclude almost everything from your existence.
This photograph was taken on March 15th 2020 whilst I was djing with the missus at the Ned in the City. Covid was already doing its thing and a couple of guests thought it would be funny to wear plague doctor masks. But it wasn’t a joke. The Gov were already urging people to stay at home but Boris dithered and delayed when he should have shut everything down and as a result we were still out working that weekend. On the Monday we woke up and we had it and that was that.
I used to manage a lot of things..careers, creative projects, a non-stop social life, travelling, partying, cultural events..and now I just manage my illness. I had another massive crash in Jan and fell deep back into ‘the hole’ and once again even the most basic things became impossible. Am just starting to emerge from it now and so this never ending game of snakes and ladders continues.
I am more determined than ever to find a way back to living but I have to traverse a minefield to get there..and as the condition affects your ability to cope with physical, mental and emotional tasks (yup that’s everything) it is pretty much impossible to avoid getting blown up along the way. And yet for many of us (and there are many of us…2 million plus in U.K) all this is happening behind closed doors. No-one can see what we are going through.
This awareness day is all about making us feel seen when we feel increasingly invisible. There is no treatment or support available on the NHS and so there is an added sense of abandonment and many don’t even believe it exists which just makes it even more isolating. So if you know anyone dealing with long Covid or any chronic illness that has taken them out of the game, reach out to them, remind them they are still part of the world because most of the time we feel like we aren’t.
Today is also the birthday of my dear departed friend Sid Roberson, I don’t exactly know what age you would be today other than you would be seriously fucking old…still wish you were here tho’ and the world is still a fuck lot duller without you…
So what’s with all the drawings? I thought this was a photo blog I hear you cry..
I can’t currently take pictures as don’t have the energy to be out and about and I can’t process them either because my brain can’t concentrate enough to make the multitude of decisions required to make a photograph.
So instead, whilst I have been back in the hole, I have been drawing a lot as it has been a way to vent my experience but also because it’s the one thing I can do at the moment as it completely bypasses my brain. I hold the pen. The pen moves. End of. And they say a picture is worth a 1000 words which is a massive plus for me right now as means I don’t have to write them…
p.s dear subscribers, I have a good man (thanks Rob!) working on how to make the pics appear in your email for those who still can’t see ’em. For now, you will just have to click each title post and all will reveal itself..but one day, o holy day, they will appear before you like a vision from the supreme being..
p.p. s he looks like he’s got hairy goat legs in the illustration above. There’s no significance, I just messed up the shading trying to hide some very poorly drawn legs. This is why I normally just stick to faces.
(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.
Re: drawings. After a couple of months lying on the sofa incapacitated, I discovered I could draw as it somehow by-passed by brain. I did at least one illustration a day (which some of you mighta seen on insta) and it kept me sane (ish) as it allowed me to express the shit I was going through & became my creative outlet as I was no longer able go out and take photos or write anymore.
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…
It is just short of a year since me and Mrs B got Covid and we are still suffering from it. Our bodies basically never returned to normal. Our energy levels never recovered. We are simply not the same people we were. And we have no idea when/if we will be again. And the jury is still very much out as to what exactly is going on. It’s still too new so they really just don’t know yet. It could be that it is lying dormant in our system and flares up when we get run down. It could be our auto immune system attacking our antibodies because it falsely thinks that the virus is still active. There is some consensus to suggest it might be do with a depletion of oxygen levels which causes inflammation but they still don’t know what is causing it or what might cure it. There are lots of theories but no answers at this stage. Only more questions. And you can drive yourself crazy thinking about it.
I am writing this to share my story. Not as a cry for help or to seek sympathy but so that others who are suffering (or who live with people who are) might read it and connect with what I have to say and feel less isolated in their experience. We were “lucky” that two people very close to us also developed Long Covid (L.C) at exact same time so we formed a little support group to share symptoms and to help remind ourselves that we weren’t going mad and something was actually desperately wrong.
We got it in the first wave and so we are essentially L.C Veterans but if you are one of those who got it in the 2nd wave over Xmas and are still symptomatic 2 months later and are desperately trying to work out what the fuck is going on, this is for you. They think anything from 10-30% of people will go on to develop L.C after the initial contagion which would mean anything up to half a million people in U.K might now have it to some degree which is a staggering amount.
This is also to help clarify to people who think it’s ‘just like the flu’ that it isn’t. Some people only get ‘flu like’ symptoms but that doesn’t mean it operates the same as the flu. Has anyone ever had flu for a year? No, so it’s not the same. I’m not even sure why people need it to be the same. And to be sure what it is when no-one actually knows yet seems a bizarrely committed conviction. It also bears a resemblance to Chronic Fatigue Syndrome (CFS) but again it is not the same. It’s its own disease. It’s brand new and operates unlike anything else before it. And it seems to affect everyone differently which also makes it unique.
I am also writing this as a warning to those who have not yet got the virus that it is definitely not something you want. You might think you are healthy and fit and it won’t affect you badly but L.C has struck people across the board. There is zero correlation between former health and developing long term symptoms. It’s just a lottery but this is not absolutely not a game you want to play.
I would also have, at one point, maybe written this to try to convince the disbelievers that it was real and not a hoax but if it hasn’t gone in after a year’s worth of non-stop news coverage and over a 100,000 dead (U.K) then it’s not going to so I won’t waste my breath on you.
I can only talk from our own experience in terms of how it has affected us but from talking to others & reading other’s stories there is a consistency. And that consistency is ironically its utterly erratic nature. You do not go in a straight line. You do not go from worse to better and stay on that trajectory. We had it bad for the first few months then improved for a couple of months and then have had sporadic relapses ever since which varied in degrees of severity with little rhyme or reason to how much you were affected. And you can flit from fine to frazzled and back again on a daily basis.
We eventually worked out that any sort of over-exertion could set us off. Anything that gave us an accelerated heart rate. Exercise intolerance is one of the key components of L.C. If you try to build your strength & fitness back up you invariably get punished for it. In fact if you overdo it at all you get punished for it. I got caught in a storm in November and ran up a steep hill to get out the rain and that put me down for a month. We had a 10 minute dance in the living room last Wednesday and then became instantly run down for a few days.
This is just to give you an idea of how little room for manoeuvre you have with this thing. It’s like there is this invisible barrier and you don’t know you’ve hit it until it’s too late. Now at least we are aware what sets us off and we make a decision whether to say fuck it or not. You basically have two choices with L.C – overdo it (which is almost any activity) & suffer the consequences or take it ridiculously easy and stay functional. It got so ridic as to how little could set us off we ended up making a joke of it so we could deal with it..taking the rubbish out? That’s two days in bed. Doing the laundry? A weeks’ relapse. Going to the shops? That’s a month in a coma. You get the gist. And the joke is, it actually helped. Humour always saves the day.
And you might read all that in horror but in the scheme of things we don’t actually have it too bad. We are extremely fortunate it never went to our lungs and our biggest symptom is feeling utterly wiped out a lot of the time. There are people who can’t get out of bed, who are constantly short of breath and suffering a multitude of other symptoms and who are all besides themselves with anxiety over it. One of our support group had a severe physical collapse a week or so ago and had to call an ambulance as unable to breathe properly with chronic chest pains which was obviously terrifying. But as terrifying as that sounds and was, they are one of the lucky ones as didn’t end up in hospital on a ventilator. They were able to get their breathing under control and are now in recovery. There is a possibility they got reinfected with Covid on top of Long Covid/Chronic fatigue and are now waiting on tests to try to ascertain exactly what exactly triggered such an episode after months of feeling fine and nearly a year after first contracting the virus.
At this stage any conclusions as to what is happening to us all are nothing more than supposition and as I said, you can lose your mind trying to work it out. You play detective constantly, analysing everything you have done to see if you can pinpoint what it was that made you take a turn for the worse. It makes you incredibly fearful of doing too much and even when you feel better it is sometimes worse because you still have to tip toe around to not risk setting it off again. But you just gotta get on with it. It is vital that you deal with it rather than let it define you. It’s all about managing it and not letting it break you mentally.
Maybe because we have had it for so long we have reached a level of acceptance about it which is crucial to be able to take the knocks when they come. For sanity’s sake you must reduce your expectation for improvement. If not, relapses become too demoralising and can seriously affect your mental health. Your mindset must be strong in order to cope with the back and forth. That is not to say you shouldn’t have hope for a recovery, you must, but you have to be realistic. We are a year in and it is still effectively ‘Day 1’ because I know, even though I feel reasonably okay at the mo, I could run round the block right now and that would do me in.
I think personally, we are also better equipped to deal with it because tbh we were not leading that healthy a lifestyle in the first place. We were always exhausted from our relentless lives and in recovery from big weekends so feeling sub par and wiped out is something we knew all too well and it has sort of helped us cope with L.C. I have nursed a splitting head from hangovers so many times during my adult life so it sort of prepared me for having what is pretty much a non-stop headache for the last year. We also ache like 80 year olds and every muscle in our body feels like it is permanently pulled. Again, as I suffered with a severe back condition for years so am used to high and constant levels of pain which has also helped me cope with this.
I think it is infinitely worse for the fitness lot as the drop off is much larger. What is tough for us personally is that we had a seemingly inexhaustible amount of energy. We were always on the go. Never stopped. We had a rep for it. If there was one phrase everyone uttered to us when we described what we’d been up to was “I don’t know how you do it”. Well, now we wait patiently until we can again but those energy levels might never return. And as depressing a thought as that is we are sill here. We live, we breathe. we exist. We are the lucky ones.
I should also point out that it isn’t just physical exertion that can wipe you out, its mental too. In the early days just a single phone call could make me have to lie down for a few hours to recover. There is also the dreaded ‘brain fog’ which zaps your mind into uselessness all the time. You just hit a wall and your cognitive function ceases completely. Before L.C I could always just ‘push on through’ if I was tired. But you cannot do that with this because you will be punished for it. This is my advice to those who are struggling…you have to give in to it. If your mind and body need rest give it to them. If you don’t it will only get worse. The key is to stop before you get tired so you don’t wipe out. Take lots of breaks. Give yourself massive amounts of leeway. Do not try to behave like you used to because if you push on through and wait till your wrecked you will get seriously slam dunked for it.
Until they have any genuine answers or solutions we all need to just stay calm and get through it as best we can. We are now taking a variety of supplements (happy to divulge if anyone’s interested) that we think might aid our immune systems to recover and to boost our energy levels. Maybe they are helping & maybe they aren’t. There is no real way of knowing as there are too many variables to work out what is working and in all honesty it doesn’t really matter. You have to feel like you are doing something. Regardless of what you administer as a treatment you still have to will yourself better. The mind and body are one system. They are not separates and feed off each other, the wellbeing of one affecting the other and vice versa. So to have any chance of recovery you have to believe improvements can be made. Scientists have proven that the placebo effect is present in all medicine no matter what. Belief won’t get you there alone but it is an integral component to all treatment.
The one thing that has undoubtedly helped throughout is meditation (which we do twice and day) as it makes you calmer which helps with the stress and anxiety of having an ongoing illness and it also gives you much needed energy when you have none. I cannot imagine how we would have got through it without it. We did a course at the London Meditation Centre but again, if anyone wants to know more about that please get in touch.
I am obvs hopeful we will get fully better at some point but am also realistic it might be a while. My heart goes out to everyone who is dealing with this and if anyone wants to get in touch to discuss please do. Unfortunately, if you have not been through it is difficult to understand how it feels which is why I felt it was important to flag all this shit up in the first place. If you are suffering and your immediates are telling you it’s all in your head, politely tell them to go fuck themselves and go and talk to people who are able to relate to what you are telling them.
I will leave those who are suffering with a positive..as this is the global number one health topic at this moment in time and for the foreseeable future there is consequently going to be a relentless amount of research being conducted by the medical world and this is cause for hope. Give ’em a bit of time and they’ll no doubt get to the bottom of it and hopefully be able to prescribe something that will be able to tackle it. Hang in there people, help is on the way…and in the meantime you must learn to help yourself. Learn how to function in dysfunction. Learn how to not lose your shit over it. Learn how to beat it by not giving in to it. Laugh in its face. Don’t forget, you are a human being. You are powerful, resilient and extremely adaptable. You will not be beaten by it. End of.
P.s Please share to anyone you know who is dealing with this.
