I wrote this piece today during a writing circle, writing with a group of others, all free writing as we wished. The stillness and the community shared space allowed this to happen. So I share it here, with you.
Warning; it’s very personal, and may contain ‘health’ triggers for some.
When I close my eyes and feel into my body, I feel coiled, curled up, almost foetal. I notice I’m really holding myself close, wrapping myself up in my own arms, in clothes, in warmth and home comfort. My belly even grew during this time, as though it too was holding onto comfort, warmth, the centre belly core that I’m wrapping myself around. It’s protective. Hiding. Safe.
Perhaps it’s because I still feel so strongly the longing for ‘retreating to my cave’, as that has been such a fundamental part of my life for the past seven months, since I contracted covid19 in March. I was quite poorly, not so bad that I needed to go into hospital (in fact I fiercely avoided and resisted doing so, as to do so would be to admit how sick I really was)… but I did retreat into the cocoon of the spare room. It became my sanctuary, my cave, my withdrawal to lick my wounds and heal myself.
The after-effects of the virus were undeniable, and unbelievable. So many and varied, so scary and traumatising. Neurological symptoms that shocked me, upset me, angered me.
Who knew that vertigo wasn’t simply a fear of heights that made you go slightly wobbly, but actually can be a terrifying disconnect between reality and what your body feels or believes? A thing that could take you from standing or sitting calmly and feeling absolutely normal, to slamming into a wall so hard you’ve a lump on your head. Multiple times. No control, no warning, just SLAM. Ouch. Or upon laying down would invite the kind of incessant, nauseating room spinning that you may only ever have experienced after a little too much adventuring in alcohol. Every night. Or that it meant learning a new way of fetching things from the floor, or putting socks on, that didn’t mean bending down at all. Or you fall over, scarily easily, because dizzy vertigo spins hit. Every time.
Who could have guessed that fatigue didn’t just mean really, really bone-weary tired? That actually what it means is hitting a wall, sometimes without doing anything at all, where you’re actually unable to move, to lift your arms, to do anything but sit or lay feeling utterly miserable because you can’t move. Miserable because you know something’s broken, and you’ve no idea how to fix it. Miserable because every single action we take for granted in life becomes an internal negotiation, fearful, stubborn, consequence-costing. All… the… time. You learn the truth about spoons. It’s not ‘just tired’.
Who knew your eyeballs could ache, as if hit by a tennis ball during school sports, throbbing and star-spangled vision, for no apparent reason? Who would have thought that pins and needles, that mildly innocuous and slightly irritating childhood bizarreness, could come on so violently and be frighteningly painful? Who on earth would think that you could viscerally, physically smell a smell that nobody else could, a vile smell you can’t eradicate, so often that you begin to feel that something inside your brain really is actually broken? You learn what paracosmia is. Apparently, some people lost their sense of smell for a time; I’d rather that, than try to eat, drink, sleep with the non-existent yet very real stench of petrol or paraffin in your nose. Tinnitus is the same; a sound that isn’t there, but it’s real enough in your ears – or so your brain tells you – that it can drive you to places you don’t want to go.
Perhaps you, like me, thought that brain ‘fog’ simply meant fuzzy headed, like after a night of poor sleep, or a few drinks, or just from exhaustion. Nope. It’s like someone pressed pause on your thinking ability and you can’t simply will it away and just go back to thinking. Like a short circuit. Dots don’t join the dots. When you’ve relied and depended upon your brain for everything your whole life, it’s really very scary when it just doesn’t work. Repeatedly. That one’s a to-tears-reducer. Thankfully that one wasn’t too often for me.
IBS was tough beforehand; my digestive system simply went AWOL afterwards. COPD means that shortness of breath was a known thing before, but not like this. This was buy-an-O2-monitor and try not to be scared level. Heart rate meanwhile was partying up around a permanent 100 to 120; that’s pretty scary too for someone with a pre-existing arrythmias. Muscle wastage. Bedsore (which isn’t simply being sore from being in bed, turns out it’s basically a hole your body eats into itself due to constant pressure). Recurrent cystitis.
It’s no wonder I wanted to simply curl up and hide in my cave. Still partly want to because that shit was scary.
Everything I had left in me went into my work, every ounce, every drop of breath, heart and mind effort went into my clients. My work. So important to me that it had to come first. My only compromise was to cut back on my hours, so that I wasn’t attempting impossible 11-hour days.
Any droplet of anything I had left during that time went into my family, relationships. Drip by measly drip. I’m half surprised anyone is still there. Except that I’m incredibly lucky, they’re amazing, patient, compassionate people. Some struggled, some were forgiving.
The rest of my life I spent on or in bed, resting. Rest… rest… rest. I’ve never been so bored of resting, yet so utterly incapable of anything else. Ever.
My heart ached, hurt, for all of the life I was missing out on, even dog walks. Not only because the coronavirus was ravaging through the land, but because my body was ravaged and broken, useless. Stairs were hard. Cooking was hard. Walking further than around the house was mostly out, some days I only managed the stairs once, some days not at all.
I’m blessed, profoundly privileged. I have a home, garden, love, people. I was fed and cared for when I couldn’t feed or care for myself. I could continue to work from a ridiculously expensive and comfortable chair in my own office, where my body could rest while I used my heart and mind.
I’m still here to tell the tale; with diabetes, a heart condition and a serious respiratory issue, frankly I consider myself bloody lucky. But I didn’t feel lucky, in my care. Licking my wounds. For seven months.
Some clever someone/s said that Vitamins D3 and B12 might help. I said, meaning it completely, that if someone told me licking an elephant’s arse would help, at that point I’d have gone out to find one. I took them like smarties, until the smell of my pee changed (the body can only absorb so much) after which I knew I could take a normal dose. After two weeks, I didn’t dare hope or believe, but I knew in my heart that something was returning. Some sense of my previous self. I cried. After four weeks, now, I remain stood up or can walk around without negotiating, for ten or twenty minutes here or there, easily. It’s like learning how to tango or walk on the moon, it’s ecstatic. Delirious.
I live with the guilt. That many do suffer from not just post viral fatigue as I have, but from long term chronic fatigue. Not for months but for years. That they endure, the way I’ve lived for the past seven months. In bed. In my cave. Desolate, desperate and miserable. Stubborn, strong, iron willed. Equally compassionate to myself and frustrated and angry at my body. That chronic fatigue sufferers have to fight to be heard, believed, treated medically, even loved for themselves no matter what their bodies can or can’t do or perform. I cry for those who live with this and may never find their own particular way out; that there may not be one.
I live with respect, admiration and astonishment for how so many chronic fatigue sufferers go on about their lives, learning about pacing, about spoons, about trusting their bodies, treating them right and enabling them to – mostly – function in life.
I just went to my cave. And hid there. And it was truly horrible. I stopped calling myself a coward; that wasn’t nice or kind. I stopped beating myself up; that was awful. I learned to rest, to be kind, to be patient with myself and my body, even when others weren’t.
I’m on my way back… or perhaps forwards. I’m sure as shit not pushing it. I’ve learnt from these remarkable people to be cautious, to be kind to myself, to not to push it or I’ll simply slide back and regret it. I’m taking my own sweet damn time.
But I began this piece by feeling into my body, truly and deeply in stillness …and I found that I’m still mostly curled up, wrapped around myself. Keeping myself ‘safe’.
And with all my bursting heart I want to leap, and spread my wings, and dance and fly and sing. I want to explode outwards in a gleeful frenzy of joy, life and laughter. But I am afraid, and sensibly trepidatious.
I shall have to learn to build myself up, slowly, carefully and thrive fully once more. One step out of my cave at a time, slowly-slowly, but surely.
I’m one of the lucky ones.
“How does one become a butterfly?” she asked pensively. “You must want to fly so much that you are willing to give up being a caterpillar.” Trina Paulus