This blog is in timesoup. I can’t write straight forwardly about long covid like a diary would be, because the experience of long covid itself is not a linear or sequential matter. There is also a need to use what’s newly discovered about long covid to look back and understand what happened. I’m tackling a topic that is in opposition to neat narrative making, and thus unruly when trying to write in away that is easy to follow and understand. I also couldn’t write this from the beginning anyway. I’m now 8 months late to a timely articulation of my experience, as I’ve been stuck inside of this long covid condition…which has arrived on top of my existing condition called ME/CFS…which is the one that now everyone is talking about because long covid looks like it. But what happens if you already had ME/CFS first and then got long covid? – a shaken mess of a socio-medical narrative, plus a bitter 8+ month long cocktail that smarts.
Long covid has affected my cognitive ability – i.e I have brain fog. I am, in fact, meant to be writing something more substantial – or at least with some theoretical input – but after months of not getting anywhere I’ve made a deal with the brain fog. I’ll be quite happy if this blog simply comes out – it doesn’t have to be particularly good for my re-calibrated sense of achievement. The ongoing fatigue is both body and brain in union, where thinking and/or moving too much produces physical and mental fatigue plus pain. You can’t fight it, giving up until a better time is the only card on the table. So this blog is pretty much like how life in the pandemic has been, it’ll never be too sure what day of the week it is, and always aghast at how we got to the month that we are. It will also be, like my experience, a saga
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The long covid news of the day: So now long covid is being described as four different syndromes, which the National Institute for Health Research suggests as a “possible explanation for why so many people feel they are not being believed or heard and are not getting access to supportive treatments* ”. ME/CFS is also said to be a number of diseases contained under one umbrella term, though this took something like 50 years to be recognised. Long covid types seem to be: 1. the trauma of intensive or acute care; 2. long-term organ damage; 3. post-viral fatigue; and 4. neurological or central nervous system disfunction. They obviously may overlap etc, and latter two can arrive from milder C-19 cases. In addition to some of number 3, I got the last type…or I was vulnerable to it because of the ME which is already a disease of the central nervous system, nobody knows. It is the long covid type that doesn’t make sense at all, and the type described as being quite similar to ME, though experientially I find them quite different, like 3rd cousins perhaps.
More info at – https://www.longcovid.org/
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It’s been 8 months since I contracted covid in early March, which was mild and defied the typical symptoms. And yet I still need a walking stick – I very much didn’t need one before. The top photo, being timesoupy, is from June when I had to go to A&E after collapsing. This was the point that drove home that I indeed did have the long covid thing, which I had thought a realistic possibility but had managed to convince myself it was not for some time, thereby demonstrating my considerable training by the medical system in disbelieving myself. It is only lately (October) that I have starting speaking about how sick I have been, and what long covid has done to me for so long. People are surprised. I didn’t have to mention being ill until recently. Everything has been online. Working from home is about accessibility and disability rights, and it works. (Though we should really address why dis/abled folk statically earn far less given that virtual work is now suddenly permissible thanks to healthy folk needing to stay at home too.) With 13 or 15 inches squarely framing my head and shoulders, you couldn’t tell that I would remain in bed after the call, or that I would have rested as much as possible to attend so that my brain would work, or that it would takes days to get back to a better place after that energy drain.
When I decide to be visible people see, otherwise not. This is the same for ME. I suppose getting away with not being noticed as sick is also aided by my chosen lifestyle (chosen because of the ME), doing (or in current state, trying to do) a PhD – its not a 9-5 thing with only myself to hold myself to account for good amounts. In any case I can do everything, just not very much of it currently. It’s like a diet that is off-life, not off-food. You know, everything is ok but in strict moderation, that kind of diet. But why didn’t I say anything until now? Because I have improved a bit, and I can think a bit better, though brain fog still plagues me like a soul sucking demon. I have to think clearly to be able to speak about it, because illnesses like this are impossible to negotiate socially and medically. You have to have your wits about you. I haven’t had my wits for quite some time. This is not what illness looks like to most people. Recovery is not straight forward, often backwards, and in my case I became much much worse then the beginning. I’ve also plateaued lately, so this might be it.
Some people will have seen me in spring time appearing fine. I wasn’t but it got worse, not better. Both social and medical relations rely on being believed. I am trying to write this blog honestly. It is hard for me to do as I have been trained to approach life under the condition that I will be disbelieved. This is courtesy of the medical system over the last 18 years. I have recently recognised that this is what a medical trauma means, or at least one of the types. Psychological bullying. So I’d rather not talk about it. Rather not defend myself with people that just don’t understand the complexity. I also like not talking about it so I don’t get pity. And that I can talk about other things in life and not think about it all the time. The latter really helps with the pain.
When I do speak about ME I always think I have to hide the bits that don’t make sense, or reduce what I have experienced to something easy to comprehend. And to be able to speak about it already having been very informed, so as to frame my description in the terms the doctor and friends require. I think I have to explain the answer as I ask for help on the problem. If I fail at this I am not believed and I won’t get any treatment, and that doctor won’t believe me for ever more. I’ll either go home and hope I don’t die, or try to argue, or cry. The latter two will end with being prescribed anti-depressants or anti-anxiety medication because the doctors are always too happy to make a psychological condition out of a biological disease, which is what the worse case scenario looks like. And the problem with ME/CFS, though it’s long been proven, the medical-science systemic is still playing catch-up with the truth that ME/CFS is a biological disease, not a psychological one. You can blame a couple of eminent psychoanalysts in the 1970s for that, and the misogyny thats been imparted on to a disease that affects 80% women. I accepted anti-depressants to appease a new insistent doctor lately and my liver turned me jaundice to prove our point.
I think my believability stakes are pretty bad as I entered the system as teenage girl (anti-depressants and anti-anxiety meds are always on pre-order for teenage girls, always the presumptive solution) and thus I already became a dubious patient before adulthood. Where I, like all women statistically – and even more so for black women and women of colour in this country – will be under diagnosed. Men, particularly white ones, get more medical sway. Fact. I was eventually diagnosed at 32. I was ill at 13. It would be easier to transition my gender in order to be taken seriously, then it is to get a diagnosis and treatment for Myalgic Encephalomyelitis as woman. I have given this some serious thought and it’s not a bad idea. I am really not attached to being female, but I am lazy and/or limited in energy for that kind of endeavour, so keeping the one given at birth is convenient.
My point is, I think a lot first before I speak about my medical condition, and I am very careful who gets to know. I’ll also avoid speaking about it as much as I can. I’ll ask you how you are and engage you, skipping over the return of that social nicety. I’ll joke and make light out of feeling like shit. My humour is midnight-dark. I’ll hold the worst parts back, and I’ll speak about everything else first (see the above). So this blog is hard, as is getting to the point. And it feels very strange to write it. But now, because long covid is here and loud, it’s time people know how fucked up this all is. The way in which ME/CFS has been regarded by the socio-medical systemic, is the reason why people with long covid are not getting the support and medical attention they need. I am stuck with both, and my medical legacy means that the battle for treatment, though i’ve taken it on, has little hope. I was already left out in limbo before I could try this time round. I haven’t any treatment or support yet.
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An ME/CFS factoid: ME/CFS is generally considered a non-mortal condition (not strictly true, though a doctor putting it on death certificate is rare), but it can reduce the duration of one’s mortally by 25 years, statistically speaking. Although complications are a contributing component to this, the main reason for such shortening of life is that people who have ME/CFS find it difficult to tell when they get another a serious mortal condition, like cancer for example, and so they arrive much later into the system for those conditions. ME/CFS symptoms are very similar to Hogkins Lymphoma, AIDS, brain tumours, the beginning stages of all forms of cancer (this list could be very long if I had more energy), and ME/CFS symptoms can change from one day or week to the next, arriving anywhere at all in the body, it being a central nervous system condition. Long term ME/CFS people – having been in a frazzle so many times over a new very worrying symptom only to find, yet again, that it is the old friend ME – simply to do not panic and do not go to hospital until well after they should have.
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I was in ill in early March I couldn’t tell whether it was covid or not. At the time I couldn’t get a test. We were told covid symptoms were a cough, fever, and flu-like symptoms like fatigue and joints aches. I had full-body fatigue, very painful joints, a dicky-tummy, zero appetite, headaches, and my dry eye condition blew-up into pre-orbital cellulitis (a major eye infection spreading to eye muscles, normally needs a hospital visit which, of course, I did not, opting instead for XXStrong antibiotics). I felt rough as hell and then anyway all ME/CFS people are used to carrying on with life feeling like you’ve been hit by a bus. I didn’t have the key covid symptoms – not much fever to write home about, no cough. I don’t know if I lost my taste and smell (that symptom to pay attention to was understood later). I felt sick so I really wasn’t eating just when essential for fuel i.e step 1 – put food thing in face hole, step 2- swallow. (My tongue and mouth would later be curiously fucked however (still are), so maybe the lack of taste was true, who knows.) I was home alone as my partner was stuck in Prague, and for 12 days I took my temperature every two hours, tested my breathing, researched covid on what I could expect, and went for a park walk towards the end when I didn’t think it was covid anymore, which I regret in hind sight, but I had already started disbelieving myself by then. During this time I decided not panic unless my fever went up or I got a cough, and so I fell back into the groove of believing this was the old friend ME again doing something new. I tried to work (normally a very good distraction) though was scuppered by not being able to see. After 14 days the antibiotics were kicking in and I was beginning to feel generally better. And then I got very deep and painful chest pains. Even then, such was my resolve about a lack of cough and fever, that I put this down to anxiety though I have never suffered the physical pain of anxiety before, and this chest pain was a fucker. I still did not have difficulty breathing, that would come much later.
That was the beginning. There was a weeks pause of feeling remarkable good (comparatively I mean, I even went for a short run for the first time in 5 years, because I was so full of hope that I was better…it was a post-exertional malaise test…which was a stupid test to do, very, very stupid). From then on things got worse, slowly and weirdly, until a crunch point. Only in the last two months have been getting better, and I’ll be filling in between March and today, in the next posts, in no particular order, with my vibrating muscles making typing more difficult then in it used to be.
* Mahase, Elisabeth. Long Covid Could Be Four Different Syndromes, Review Suggests. BMJ 371 (14 October 2020). https://doi.org/10.1136/bmj.m3981.
