My Long Word on My Long Covid…
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.