Nine months in the long limbo of long covid

Nearly 70,000 cases of covid infection were reported yesterday, 8th January. Of course that’s officially confirmed cases and the real number of infections will be much higher. A small but significant proportion of those people will go on to be hospitalised and a small but significant proportion of them will die in the next few days. As we are often reminded, as if to reassure us, most of these victims will be over 60 and/or have various ‘underlying medical conditions’, but there are at least a couple of important ways in which this narrative of reassurance is both troubling and misleading. First, this narrative, intentionally or not (and I think it often is intentional when seized upon by various covid deniers and ‘lockdown sceptics’) effectively relegates people over 60 and those with ‘underlying conditions’ (and the list of these conditions is much more extensive than people normally realise) to more or less sub-human status: those whose deaths and lives are apparently relatively unimportant. Secondly, the fact is that you just don’t know if you are ‘vulnerable’ or not to this virus – no one can be sure that they are ‘safe’ from it. Indeed it’s currently thought that one in 20 people who develop symptoms on infection might suffer symptoms lasting more than eight weeks and, further, a significant number of those people remain unwell for several months (at least) after infection. This isn’t ‘just’ elderly people or those with ‘pre-existing health conditions’, but includes relatively young, relatively fit and active people like me – I’m 45 and before I became very ill with long covid last summer I used to weight-train in a serious and focused way at least 3 to 4 times a week. There are many, many people in more or less the same position as me currently and, given the rates of infection at the moment, many more will find themselves in a similar place over the next few weeks and months. Those who think – selfishly and incorrectly – that the pandemic is of little concern to them personally really ought to think again.

I wanted just to record my experiences of the long limbo of long covid over the past 9 months or so.

I’m pretty sure I know where and when I was infected and indeed who passed it on to me. In late March, a day or two before the first lockdown came into effect I walked into York city centre with a bravado that turned out to be hubris. I’m not a natural risk-taker, but paradoxically perhaps this instinctive aversion to risk sometimes prompts me to do stupid stuff in conscious rebellion against the cautious prohibitions commanded by my over-active Super Ego. I like to stick two fingers up to its finger wagging every now and again. It was a mistake this time and one I’m still paying for. I was in town to prove to myself that I wasn’t scared and, while I was at it, to pick up some bottles from the very nice Belgian beer specialist on Stonegate and to use a Boots gift card I’d been given months before. This was before masks in shops became mandatory and before people really started to wear them. While queueing in Boots I noticed, too late, that the cashier had a nasty cough. I was too embarrassed to leave the line before it was my turn to be served, and I remember thinking ‘you fucking moron’, not sure whether I was directing the insult at her or at myself. Both I suppose. She must have known this was a symptom of covid and, for that matter, her store manager must have known it too – she should have been told to self-isolate and supported on full pay. I can’t be 100% sure I got the virus from her, but it seems highly likely. Sometimes I wonder if the elderly woman who was behind me in the queue is still alive.

At first my symptoms were extremely mild. I remember waking up with what felt like a mild hangover every day in mid-April that I would shake off by mid-morning. Then I got splitting headaches every now and again and would often feel very tired in the afternoon, and I had a slight tickle in my lungs when I took a deep breath in but I felt no more than very slightly ‘off’ and was still able to function more or less normally – whatever ‘normally’ means in lockdown at least. In fact, while I suspected I might have a mild case of covid infection (and self-isolated), for a long while I put this feeling of being very mildly off-colour down in all probability to psychological side-effects of lockdown since I didn’t have any of what were then seen as the ‘classic’ symptoms – fever, continuous coughing, loss of taste or smell. In fact between April and August I was actually able to step up my workout routine – I bought some resistance bands just before the gyms were shut down and worked out pretty much every day for a couple of hours at least. I’ve probably never been fitter or stronger than in those few weeks.

The only strange thing that happened to me in that time was a series of panic attacks – 5 or 6 of them in a 24 hour period. I’ve never had anything like that before. Just before each attack I was watching something on my laptop or looking at my phone when I developed a sudden, deeply uncanny sense of deja-vu followed by a rapid and overwhelming wave of terror. I remember feeling that something extremely bad had happened and/or that there had been some sort of evil presence in the house the night before. Each time it lasted only a few seconds but left me shaken and trembling for a long while afterwards. In retrospect I think this was when the virus got into my nervous system. But apart from this odd 24 hours I felt only mildly under the weather for the first few months.

Then in August, when they relaxed the lockdown restrictions, I met up with a friend for a few hours in the city – we just talked and drank coffee in a couple of socially distanced outdoor venues and went for a walk along the river. On the 15 minute walk home to my house I suddenly felt very ill, like I was going to faint and collapse in the street. I only just made it back to my home and crumpled on the sofa where I lay for a few hours with a heavy physical and mental exhaustion that I have never experienced before. Over the next few days my health rapidly and frighteningly deteriorated. The headaches became permanent and the tickle in my lungs became a feeling of uncomfortable tightness. Further symptoms, often bizarre, followed in a gathering cascade. One day when I was out for a careful, short walk in the sun I noticed that that the fingers on my left hand felt swollen and uncomfortable – like the feeling you get when you come into the warm having been outside without gloves on a very cold day – and soon after I developed arthritic pain in my knuckles that migrated to the backs of both of my hands. I woke up with terrible pains in my hands in the early hours of each morning and soon after most of the joints in my body were clicking and popping loudly with any movement. Walking became uncomfortable – my hips, knees and ankles ached and were often very stiff. In addition I had a feeling of what I can only describe as ‘heaviness’ and ‘unresponsiveness’ in my legs – almost as if commands from my brain to move would be held up somewhere in my nervous system in a lag of a few microseconds. About the same time I developed shakes in my arms and terrible aches in my shoulder joints making it impossible to lift my arms above chest height without agonising jolts of pain. Strange knocking and thumping feelings in my chest followed. I developed severe pains in my back and down both sides of my rib-cage.

At my worst, in early to mid September, I had a couple of nights where I literally thought I was going to die. Both times I went to bed with a strange feeling like there was a stream flowing up through my chest into my left shoulder and down the length of my arm and woke up in the early hours with that arm completely dead – numb and useless, I couldn’t feel it at all and I couldn’t move any of my fingers on that hand. I thought I was having a stroke and considered dialling 999 with my useable hand. I didn’t do it, but I did draft goodbye messages to my family on WhatsApp on my phone, to have them ready to send if I felt myself going. Sounds completely absurd now but it felt very real at the time. About the same time the vision in my left eye blurred and I found it difficult to read anything on a screen and I also developed crippling myalgia in my shoulders and neck. I was taking paracetamol and rubbing ibroprofen gel into my shoulders and back around the clock just to manage the constant pain. I also had pretty bad ‘brain fog’. Basically it felt like my brain was encased in cotton wool and that I was somehow removed from reality, like I was watching everything – including my own activity – from behind thick glass. I would have spells of intense de-realisation and head spinning vertigo when I turned my head quickly or when I looked from brightness to shadow (peering out of the window into the sunlight and then back into the house for example would leave me extremely disorientated).

The psychological dimension to all of this, as you might imagine, was pretty bad. I was deeply depressed and I was convinced that I had a degenerative chronic illness and that my life was pretty much over. Thankfully at about this time I read on a long covid support group page on Facebook that over the counter anti-histamines were alleviating a lot of sufferers’ symptoms. I bought some and in a couple of days the worst of the myalgia and the brain fog lifted, plus the arthritis and headaches noticeably subsided. Somehow, through all of this I had managed to prepare teaching for a new 3rd year course that I was taking over in the Autumn term – but I don’t think I would have been able to teach it had I not started on the anti-histamines in late September. Thankfully my department were really good about supporting me by first prompting me to have an occupational health assessment, and then moving all my teaching online – I simply would not have had the strength or energy to walk around on campus between seminar rooms for any in-person teaching.

I thought I was getting better in October, but like many long covid sufferers I’m hit by ‘relapses’ that seem to follow any period of apparent recovery in an interminable cycle. None of these relapses have been as bad as when it was at its worst in September, but each one is a demoralising and crushing blow mentally. It’s like glimpsing light at the end of the tunnel and then realising each time it’s yet another truck hurtling toward you to knock you flat for a week or two. At the moment, 9 months or so from first contracting the infection, I have pretty bad fatigue and concentration problems (I can’t read more than 5 pages for teaching purposes without my mind shutting down), tightness and pains in my ribs and chest – I think it’s my lungs – I have a little bit of arthritic stiffness in my joints and any form of even mild physical exercise leaves me with ‘heavy legs’, cramping pains in my calves and clicking joints in my ankles, knees and hips. I know from a couple of previous attempts at (very cautious) resistance bands workouts that even light strength training leaves me with post-exertional malaise and precipitates a relapse for at least a fortnight afterwards. In fact this inability to exercise is what’s getting me down the most. I really enjoy weight training and indeed it became a very important part of my routine over the past 10 years or so. It provides me with crucial psychological benefits (anxiety-reduction, self-confidence) as much as physical ones and it really is a source of anguish to me that I haven’t been able to do it for 5 months or so now with no end in sight. I’m sure I’ve degenerated physically over the past few months and lost a lot of muscle bulk which is just heartbreaking. I know it’s not the biggest tragedy in the world but it’s really shit for me.

These last 9 months have been like living in limbo for pretty much all of us – lives on hold while we wait for the pandemic to pass. While I don’t claim to have had it worse than many others – I’ve not lost a loved one to the virus for example, and I can’t imagine what it must be like to be old and isolated or to have a child with a chronic health condition and to be shielding them in fear for their life – the nowhere I’ve inhabited along with thousands of other long covid sufferers for months has been particularly alienating. This weird liminal space between not-quite-chronic sickness and not-quite-health, not really one or the other but both, is a no-place in which you can’t really make plans for the future and in which it’s even difficult to dare to imagine a future different to the no-place present – a future when I’m well and can do the things that I used to take for granted again. It would be nice to be able to go for a walk for example or to do the vacuuming without feeling half-dead afterwards. I don’t know how long this is going to last and when I’m going to get better or if I ever really will. I heard recently that post-viral symptoms among those who contracted SARS-COV-1 (very similar apparently to the long haul symptoms stemming from Covid-19) lasted between 12-18 months and that on this basis outer limit recovery times for those with long covid are likely to be in this range – so that’s something. Certainly a significant number of long haulers who fell ill in March/April seem to have recovered – but not everyone has the same range or severity of symptoms. I’m waiting for a referral to a lung specialist and to a long covid clinic and I hope some progress will emerge from that.

So it’s been a pretty shit 9 months. If I, as a fairly fit, not that old person with no known ‘underlying conditions’ can get it, so can you and so can the people you care about. Don’t be complacent and don’t be an idiot.

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