It was kindly meant, that comment from someone I’ve known for many years, whom I met while out for a walk by the sea on a sunny, breezy Sunday afternoon. I hadn’t seen her for months, and was filling her in on my long covid situation- ongoing since the end of November. I’d had infection after infection, I told her; shingles too; I was now having a cardiology referral because of my GP’s concerns in that respect… ‘Oh really?’ she said, looking genuinely sympathetic. ‘Well… you look well…’
The thing about chronic illness of any kind is that you can look ok if you really put your mind to it. I don’t let anyone but those who are incredibly close to me see what I look like first thing in the morning or last thing at night- pyjamas, no make-up, untidy hair. I’ve never participated in the ‘#WokeUpLikeThis’ social media selfie trend. Today has been a reasonably good day so far, in terms of some of my symptoms, and yet, when I looked in the mirror as I brushed my teeth, shortly after my husband had left for work, I was taken aback by just how pale I looked. Even on days when I probably won’t leave the house or spend much time in anyone’s company but my own, I’ll make an effort- my hair will be clean and at least sort of styled, and I’ll have put on just a tiny bit of makeup. I’ll be well enough dressed that I could leave the house if I needed to. I’ll put on a favourite bracelet or pair of earrings. Maybe I’m just vain. But pretending, even just to myself, that I’m ok feels important at the moment. And maybe that does, occasionally, mean that I ‘look well.’
The truth can be very different to the appearance that a little carefully applied eyeliner and mascara, or the hint of subtle silver earrings might give. At the moment, I feel as if I’m in my own personal lockdown. A lockdown of long covid. A lockdown because my body just keeps asking for more and more time to heal.
When I last wrote about it, long covid felt like some kind of Twelve Days of Christmas. The twelve afflictions of long covid. On the first day of covid came the Delta variant: with added bronchitis. Then a lung infection. A sinus and ear infection. Breathlessness, a cough which seems to have taken up permanent residence, and numerous asthma attacks. A bout of shingles. Aches and pains which themselves had aches and pains. Insomnia, and lurid nightmares when able to get a couple of hours’ sleep. Irregular, volatile blood pressure and resting heart rate. Extreme levels of anxiety, and moods dipping into the depths of sadness. Permanent, low-level nausea. Migraine-type headaches and distorted vision. Brain fog. And a partridge in a pear tree…
Ok, I made that last one up.
As I sit at my computer now, in early March, just over three months on from my long covid diagnosis, I know I’m slowly getting better… and yet my body seems to keep producing new symptoms. I've got a throat infection, and I have a red-flagged Cardiology phone appointment later this week. My daily medication tally (previously low) has gone stratospheric. I’m on proper old-person medicines like beta-blockers and a mini aspirin. I don’t get out of bed for less than a mug of hot water and lemon, and a small saucer of tablets! I’ve read every website, every study, every reputable newspaper article about long covid. So much of it feels familiar- the dragging inevitability of waking up each morning still feeling drained and deeply unwell, having been awake until somewhere between 1-2am and probably again between 4-5am; the permanent, nagging anxiety; the repetitive stress injury of endless days spent at home, punctuated by the arrival of the postman, the parcel courier man, the window cleaner, or by remembering which night to put the bins out.
My school Principal has been simply amazing: utterly empathetic and understanding. She saw how ill I still was when I returned for a few weeks after my covid and bronchitis double-act: what she didn’t know at the time was that I was coming to school and doing that only, with the rest of each day being spent in bed, unable to sleep but alternating reading and lying with my eyes closed, longing for the pain to go away. She has told me, occasionally in block capitals in emails, to FORGET ABOUT WORK! And yet I can’t, and don’t: most days, the ping of a work email is like a chance encounter with an old friend, and, when the work that comes my way is manageable and not marked urgent, I feel almost relieved to attempt it, feeling that at least something has been accomplished in my day. When my A Level English Literature class, quite spontaneously and of their own accord, sent me a get well card, I burst into tears. When my Department members sent me flowers… I don’t think those tears in my eyes had anything to do with hayfever (it was January, and snowing!). You can underestimate how important it is to feel part of something, when you’re routinely at work every day, but when you have that taken away from you, it suddenly feels important. Through the two covid lockdowns, at least everyone else was at home too. I remember, fondly, how WhatsApp groups used to spring to life when we were all on lunch breaks or finishing the school day, tearing ourselves away from Google Meets and Google Classroom, and I remember the tentative steps we all made towards getting to grips with Zoom meetings: the moments of hilarity when it went wrong, and the sheer joy at seeing one another on screen. So I apologise to all those who tell me to FORGET ABOUT WORK- I do, most of the time, and I’m stepping back as best as a card-carrying perfectionist workaholic can, but doing just a bit makes me feel connected once again. Not lost, forgotten and on my own.
I still try to go for a walk, near where I live, when the weather is good enough. I walk fast, with my head down, hoping I won’t meet anyone who’ll ask me why I’m not at work. Anyone who did see me might question why someone who can walk fast, by the sea, on a cold day, isn’t well enough to be at work. And it’s just the same as the fact that I’m neatly presented- they don’t see me afterwards. After my walk, I’m generally unable to do anything but stretch on the sofa and read or watch TV for the rest of the evening. I often make sure that any tasks such as laundry, ironing or tidying the house are done before my walk… because afterwards it will be impossible. And I started from a baseline of reasonable fitness.
And as for ‘looking well.’ The first and second times that I saw my GP about long covid, she commented that she was relieved that I was taking it so well- the diagnosis and the advised length of time for which I’d be signed off- as she’d expected me to be upset. I know I was almost artificially cheerful. This was partly because I can generally, consistently score A* in saying I’m fine when I’m really not, but it was also because I was so relieved to be being listened to- to be being told that my symptoms weren’t the onset of utter madness, but an actual illness from which I would ultimately recover- to be being taken seriously and not just being told ‘You’re fine, you look well, keep going.’ Instead, I was being viewed with genuine concern and an incredible amount of understanding. It has been only recently that I’ve told my GP how I really feel. That the burden of being as ill as this, but with significant caring responsibilities for my surviving parent, and all that this entails, sometimes just feels too much. Making myself admit that, in the last few days, has lifted a burden from my shoulders: I feel no better symptom-wise, but maybe some of the dark, blank hopelessness of long covid lockdown has lifted a bit… just as the evenings are beginning to grow brighter. Maybe I won’t topple headlong so far into feeling sad, anymore.
The friends and relatives who have been consistently keeping in touch with me through all of this can have no idea of what dark places they’ve extracted me from, at times- places when everything hurt, and my body simply didn’t seem to work anymore. The closest of them know how to see through the filter of my attempts to ‘look well’, hearing the strain in my voice, seeing evidence of pain in my eyes, or reading between the lines of a text. Sometimes silence is the most eloquent thing of all, and the fact that I’ve written nothing creatively for months, despite having time to do so, probably says more than the longest word count in the world…
I’ve still got quite some way to go. My body is still contracting infection after infection. My heart literally hurts, sometimes, and I’m often utterly overwhelmed by how exhausted and drained I feel. There might, though, be the smallest glimmer of hope- emerging like the spring flowers and the spring birdsong and as the first lawnmowers of spring begin to clear their throttle.
Yes… the thing about chronic illness is that you can mostly make yourself ‘look well’ if you really put your mind to it.
From looking well to getting well, though? With long covid, that can take a very, very long time.
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