What is this strange beast that trickles so many memories into my body? It’s a remembering, nothing new, nothing strange… but time has tricked me, fooled me into thinking that it’s gone. It’s never been gone, it didn’t die, didn’t fade into the oblivion of age. Just got lost along the way, left behind like an empty crisp packet lazily blowing down the street unnoticed.
I forgot. I forgot how alive my body could be, even tentatively, stepping apprehensively into the stream, fearful of being swept away, kept stable on two feet for the most part. Risqué lumbering onto only one leaving me wobbling upright, reaching for balance. What of the tai chi I learned so many years ago, what of that balletic ability to control the body in movement on one point? What about the dancer, the positively athletic movements of my youth on the dance floor, lost in the music, lost in the rhythm, lost and delightedly so in the body itself?
Rhythm, movement, chaotic and yet pulsing, playing and joyfully teasing itself by a stretch, a leaning just on the verge of off-balance, yet finding it and keeping it within the container of intentional dance. A thrust here or four, a sway here or more, a turn and a spin that once so devastatingly easy, now creates a pause, for rebalance.
But it’s still there. Dear sweet gods it’s still there. The ability to lose my body in the rhythm, ignore all pomp and circumstance and forget ‘what it looks like’ and focus instead on feel (is that what we learn, as adults, to be adults? What a crying shame) and just… let… go.
A remembering. A losing oneself only to truly remember oneself. To step over, past, through all culturally swallowed appropriateness, socialised properness, and to simply be free.
So easy as a child, no care in the world, just freedom of bouncing joyfully and hurtling the body around with gleeful ignorance of any fear. Is that what it is, fear that stops us in the end?
Then no wonder as young adults we master the art of enjoying that ‘freedom’ in a somewhat controlled, masked format, constrained, looking awesome, posing delightfully, knowing with more control of our forming adult bodies we can ‘look good’, pose, or staying seated or by the walls if we have that fear instilled a little too far already.
No wonder indeed as older beings we stay more still, or keep those movements within ‘safe’ constraints, walking perhaps, exercise classes… so much structure and ordinary.
Fuck the fear that stole my movement. Fuck the socialisation that created that fear, that made me, us, constrain ourselves within the suit of armour known as ‘safe’, the bars of the cage labelled ‘grown up’. Normal. Socialised ordinary. Fuck that noise.
I want my body to remember it’s liberation, that freedom, this luxurious wantonness of mayhem, this tornado of the body releasing itself. Within all things, whether walking, dancing or sex. Remember what it’s like to not care who’s watching, to not mind what it looks like, to ignore pretence of constraint and control. To remember true bodily freedom.
This goes so deep, so far. Not just in dance but in all things. In posture, in being ‘with’ others. In clothing, hair, choice of accessories to ‘dress up’ ourselves in childlike glee. Stop worrying what others think, who’s looking, what that might unintentionally say about us. Just be, do, fly, free.
Isn’t this the microcosm of the macro? As we age, grow older, become more searching, seeking of ‘who am I’ and ‘what is the point’… so becomes the deluge of realising just how much of ourself, is not ourself. Just how much and how deep it goes that we are shaped by our socialisation. How much of ourself we hide, bury deep, only to have to excavate it all over again later in life.
Why must it be so? Why can we not always be free to be the truest version of ourselves? Why must we wait so long before we start to uncover just how horribly influenced we are, in all things, by society, media, family, lovers, peers equally influenced by all these things. Fitting in. Learning how. Becoming less of ourselves as we go on.
Only to finally turn around, look in the mirror, and start to remember.
(a piece I wrote with Wild Write Wednesdays; a writers group on Facebook)
There is a certain gift, that a real sense of fear of one’s own mortality, brings.
Now bear in mind I have no fear of death itself; I know where I’m going, what I’m doing, and I’m fully aware that it’s simply another kind of transition. I’ll continue my work, only in a different form.
Yet I do have a fear of running out of time to suck the very marrow from the bone of life in this form. I have so much life left to live, so much drinking in of it’s gifts and blessings, so many dreams and experiences yet to fulfil. I feel so keenly the desire, the need, to complete my work in this life before I move onto the next! Yet can we ever really complete all that we wish or desire?
I think we mostly move through this life unaware, so intent and focused on what’s next, to do, to achieve, to get to… that we forget to stop, to look around, to literally smell the roses. Mindfulness has been a great medicine for all humans to defeat that, but that’s another story for another time.
Sometimes in life we are reminded that it’s a finite period of time, from birth, to death, and the clock is ticking. Someone beloved or unexpected, dies. Our thoughts turn to the ‘end’ for them, what they missed, who they left behind, what will be forgotten and how quickly. A ceasing to exist, creates in us a moment frozen in time to really sit back, reflect, reassess our own lives.
Sometimes it’s not someone else, sometimes it’s us. A sickness, a disease, an accident survived. The current global pandemic, for example.
Whatever it is, it causes us to stop and think, and to look around.
What is my life, what does it mean, what is it for?
Who is in my life, who matters most to me, who is affecting me negatively, and what do I still need to do about that, or them?
What have I done, what have I not yet done that I still want to, what dreams do I have left unfulfilled and how can I achieve them?
What harm have I done in this life, and how can redress that?
What do I know, what have I learned, what do I still wish to learn and how can I address that?
How is my health and what can I do to balance that better? To eke out the number of years I have left in this particular life?
Are my affairs in order? If I died right now, what would be left to deal with, to tidy up, finish off, or wrestle with… and who would have to do that?
I’d like to leave some letters I think, for all those I love and care about, to let them know the effect they have had upon me and my life. To let them know, for always, beyond the grave, how much I loved them and valued them in my life.
I’d like to leave some money behind as inheritances for my children. Money may not buy happiness, but the millennials will mostly not even be able to get onto the property ladder without this kind of a leg-up. Do they even still want to? At least it’s something that might help them achieve some of what they’d like to in their own lives whether that be a home of their own, travel, experiences etc.
I’d like to leave a record of my work behind. A book, online courses, perhaps an apprentice or so, so that my work can continue beyond my death.
I think I’d better get cracking. That’s a lot of work still left to do, and truly do any of us know how long we have?
My health has deteriorated, I’m painfully aware of it. My lungs are degrading from the COPD that they were, to post Covid19 stickiness, less air, the liquor of life itself. The fatigue means that slowly my body is deteriorating in all ways, muscles, strength, stamina… and goodness knows what else is going on inside. Nobody knows, as yet, really. I hope I heal well, and can live and thrive anew.
So yes, these are my thoughts of my own mortality at the moment. Held in liminal space, for myself, here and now.
(a piece I wrote with Wild Write Wednesdays; a writers group on Facebook)
I wrap the blanket of this group of delicious beings around me, warm, safe, held… and I come alive. My body radiates, wide open, drawing on all the energies around me and from the universe… and flings wide my arms in greeting. My mind feels free, liberated, eager to explore and dive within. What words from my body shall move me today, I wonder?
My shoulders flex, aching, sore. My neck feels stiff and sore, the spot between my shoulder blades calls my attention; each shoulder blade calling out for attention of touch, pressure, liberation from being locked in place so long. I note to self to get a deep tissue massage again, and soon.
My wings are calling me home, crying out to be heard, seen, felt… used joyfully again. Despite this age of virulent attacks on the body, of fear of such, of separation and distance and time.
My medicine name. I worked for those three words so hard, for so long, over shamanic journey after journey; one particular guide showing me each time more of themself, whilst concurrently showing me more of myself. I hadn’t equated the two things before, or rather, hadn’t noted the gift of exchange in that years long process.
His own being-ness, so profound, so deep, so more-than-human. So other, above, greater-than. I am awed by his… their… presence and the powerful nature of that particular spirit. He followed me all my life. From the sleek black panther of childhood accompanying me across the rooftops, unseen, free to roam, driven to explore. Through the magnificent Bengal tiger, who accompanied me through womanhood; maiden, mother, crone. To my beloved raggedy lion who welcomed me home through my transition to man; the enormity of a prehistoric cave lion, my head standing barely comes to his haunch, when he’s sat beside me on the mountainside. We’ve all travelled wide together through my life thus far.
Until finally, during a three stage visitation over time, we travelled together to show me my true name, my purpose, my journey and lessons this time around… he showed me his true form. There are no words to describe it, yet here I am writing, so I shall try.
The books, the stories, the myths and legends, even the religions… they all have ‘pieces’ right, pieces in common. The wings. The light. The serenity within power. The lion, the names; yes even those winged beings’ names that man found, are a blend of truth it seems. Or perhaps just not the whole of the story.
He… they… are breath-taking in their truth, standing in humble glory, shining of a brightness impossibly blinding to look at and yet… I did, do and can anyway. The wings, oh the wings… my own meagre in comparison as yet. And yet. He showed me mine.
There is such a deep and profound, yet simple truth in my spiritual name. I call them in, unwittingly, whether intentionally or accidentally (they are drawn to the reflected light)… yet however, they come. I am open like an enormous door, and in they walk, freely and willingly. I embrace them, welcome them as they are, human, fallible, beautiful, broken, fierce with potential… and I wrap my wings around them.
My own wings are black as night, shiny, glistening almost… and yet with a velvety softness of huge feathers laid on thick muscle. Their true strength is only seen or felt after a time however, once the bewitchment of them wears off, they see the human, and the strength it truly takes to wield such wings as a mere human.
I help them to feel safe. Seen. Heard. Felt. I allow them the warmth, safety and the strength from my own wings until they learn to fly themselves. Sometimes they take flight easily, others stay and dwell contentedly within, either way… I love them wholly, freely and abundantly.
They learn to fly through the holding and the teachings whilst being within my wings. Learn to rise above, to be better selves, to be magnificent in vulnerability and find their sense of self, real and true whole self, not socialised constrained self. I lift them up.
Simply their love, nurtures me. Feeds me. Heals me in return.
Some are burnt by the brightness, cannot withstand the strength, or feel unworthy and flee. Others rise above, radiate themselves, learn and grow and become levels above within themselves.
My wings are iridescent, magnificent, resplendent.
I’ve had a hankering to journal again. And um no Facebook. Lol
I don’t want it to be all moaning, but I’m afraid it’ll start with one. Well, that’s why I need to journal I guess.
My recovery from covid-19 has been long, weary making and mostly unpleasant. Ok it’s sucked arse. I’ve written about it here in previous entries, so I won’t regurgitate all the symptoms and that experience.
But I do need to say omg I’m so bloody sick and tired of feeling sick and tired. I’m overwhelmingly exhausted. The post vital fatigue had finally started to lift a month ago (after 7 months).. but this past week it’s really kicked my arse all over again. I got nothing.
Often I can’t even lift my arms, let alone walk. When I walk I look about 90, and I’m humiliated by that. My body hurts, aches, has no strength, no energy, no stamina. Doing one relatively normal thing (for me, previously) leaves me totally shot for a week or more.
I’m not known for being the world’s most patient patient.. But seriously. This is beyond ridiculous. I know they’re still learning about the effects of long covid-19, I’m sad I got it in the beginning, because maybe later would have been better, they’d take me seriously now. I’m banging down supplements recommended like smarties. I’m resting when my body says rest.
But omg I’ve got so much to do, so much living to do, and I’m sat here a deflated useless lump.
Ok that’s exaggerating. I’m still working of course, because my client books are utterly full (unsurprisingly) and I can sit in my comfy chair and just work, to help others. That feels good at least. Useful.
But all the other things I want to do, even much of it I’d still be able to do in lockdown, I’m stuffed for, for now. Online courses, books, monthly online workshops.. nada.
I just can’t. Frustrated and sad are my current middle names.
Still.. As always.. I AM truly blessed. I have a wonderful home, which I share with my loves, a great garden (so much work done on it during lockdown!) and now even a new fabulous bathroom! My other relationships are soul nourishing and wonderful, some poorly, some lonely, all missing each other and me.. yet they’re all still there. My kids are glorious, their kids too; each struggling through lockdown in their own way but managing. I miss my mum, and my kids, most of all.
My life is good, great even. But it does feel, like most I expect, it’s on pause.
(a piece I wrote with Wild Write Wednesdays; a writers group on Facebook)
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
But I’m not here to educate you on ever-changing-currently-still-learning scientists on C19. Read them if you’re interested, or come back and read them afterwards. I’m here to talk about my own experience of Corona, Covid, the virus etc. No, it’s not ‘just another flu’.
I am not writing this for sympathy, kindness, pity or help. I’m VERY blessed, and very lucky indeed, I have a loving family, great home, lots of support. I’m a psychotherapist and so constantly observing and learning from my own experiences. I’m treating it as a harsh learning experience. I understood chronic illness, chronic fatigue, intellectually both professionally and personally (others). But I did not have a felt sense of the experience, and though naturally I’d really rather not have, it’s actually been helpful to really ‘know’ how my clients/family/friends who suffer these things actually feel. I’ve been able to continue to work, due to some amazing support. I have gratitude up the wazoo, because frankly? I’m still here to tell the tale. That’s a WIN in my book.
I’m writing this out, so that there’s a written record of it. So that it might help others who have felt like they’re losing the plot, who are questioning and doubting themselves. I’m not doubting any more. This is my experience. I now know there are many, many others going through the same things. Covid Long Haulers support groups are prolific and enormous. Yes, it’s a thing. Don’t doubt yourself. Even the local town doctors are now recognising and taking it in their stride that ‘yes, it’s a thing’.
OK here goes.
My C19 experience began on March 13th 2020 (I believe, since of course no testing was happening outside of the hospital intensive care wards back then). I was driving home, North from Southampton and stopped at a services needing fuel. As I left the services, literally driving back onto the M1, I simply knew I was getting sick. Never mind your 7 to 14 days incubation period; I knew the moment it hit my body. By the following day I was in bed, sick and feeling dreadful.
I have pre-existing COPD (chronic obstructive pulmonary disorder aka lungs are fubar from years of smoking), Diabetes type 2 (my pancreas was damaged during a surgery), and a heart condition (arrhythmia due to an electrical fault). Nice big ticks on the ‘at risk’ boxes. However…
I did not particularly suffer the typical chronic cough everyone talks about. I DID feel more ill than I have felt in a long time. My body ached and literally hurt all over like a horrible flu, aching muscles and bones. It began with the sore throat/back of nose, penetrating and revolting. I could barely lift a finger, and spent time either at my desk in the upstairs office when I absolutely had to be (I’m stubborn as heck), and in bed every other minute. I shielded from the household to try to protect the others. I stayed in the spare room and my office only (didn’t come downstairs for weeks). I bought bulk buy disinfectant wipes and wiped the toilet and bathroom every use myself. The others brought me food, placed it on the affectionately named ‘plague shelf’ at the bedroom entrance, where I’d fetch it, eat what I could, and return it. They’d remove the crockery and wash their hands devotedly. They were thankfully, all safe (or asymptomatic).
I fought to avoid hospital admission. I was scared. But I’m not actually daft, if I’d really struggled to breathe, I’d have gone in. Despite how ill I felt, I’ve suffered and survived (in the past) pneumonia, pleurisy and bronchitis galore; I’m damn good at that business. I took ALL the things, self medicated to the hilt, took the GP prescribed emergency pack at home, stayed in bed and rested (not that I could do much else to be fair). So I avoided hospital and to this day thank my lucky stars.
NHS therefore class my experience of C19 as ‘mild’.
I was in bed for two weeks. I cancelled some work (I work from home, online), struggled through others, and carried on. The fever was dreadful, sweats and brain fog, crazy dreams and surreal moments. My body hurt, did I mention that? A lot.
I started to feel better, was briefly ecstatic, then within days would feel truly dreadful again, the sore throat would come back, the body collapse again. This ‘false recovery’ was a pattern for several more weeks. After 4 weeks we figured I must be ‘over’ the actual virus or at least technically safe, so I came out of shielding from the family. Those first hugs? Literal gold.
Except… my ‘good days’ (where I felt I was improving) were interspersed with ‘oh no, wrong again, I feel awful’. It just… didn’t …end.
It’s now September, that’s SIX MONTHS. So I’m going to list my ongoing struggles and symptoms here so you know that this is what a long hauler’s life can look like. With no knowledge or understanding of how long this might continue, or when it might end, that’s with a positive hopeful assumption clinging on that it will. Hopefully the science and treatment will catch up.
I am in pain. Every day. Literally every bit of my body hurts, from my fingers to my toes. Muscles, joints, eyeballs. Some days I can walk around seemingly physically fit and able, others I can barely lift my arms. But always it hurts, everywhere. Today’s a day I’m struggling to walk. It varies.
The fatigue is out of this world. It hits like a brick wall, and I’m ‘done’, I can’t do anything, literally. It’s like every last morsel of energy dribbles out of my toes and it’s all gone, blank, stuck, immovable. It’s also daily, constant, and I’ve learned – as chronic fatigue sufferers have to – to pace myself (mostly). To ‘ration out’ all efforts, all movements, all commitments. It’s a constant negotiation, every single thing I do. My thinking goes in circles like this; ouch this hurts, I need to move, how much effort and pain is it going to cost me to move, is it worth just staying this way for awhile longer until I can’t… until eventually I do have to move, then I’m stuck again in the same loop. The standing ‘joke’ I’ve been using is “If I fart, I need a two hour nap”… but it’s not terribly funny in reality.
My eyeballs ache and sometimes hurt, like I got hit by a tennis ball in the eye (I remember that as a kid, and it fits). I get constant disturbance of vision. I used to get migraines, so I recognise it, but this isn’t migrainous because the head pain doesn’t arrive, it’s just the random disturbances of vision. Flickering, blank spots, random colours etc. However it does give me consistent headaches.
I’ve had vertigo on and off, something I’ve never suffered before. I assumed it was just a bodily response to fear of heights or something. But no. Having ones own body suddenly and without warning, uncontrollably lurching into a wall (and unable to stop the lurch in that direction until it actually passes) when you least expect it, is quite shocking. Not to mention a few head bumps along the way.
Often when I lay down the room is spinning, as if I had way too many drinks (I don’t) and have to stay super still just clinging on until it passes. Jerky, repeated, like a washing machine round and round. It just won’t stop… but eventually it does.
I cannot bend down to picks things up, if I do, I get so dizzy I fall/almost fall over. The others are often lurching to catch me when that happens.
Dizziness, randomly, from nothing and out of nowhere.
Pins and needles. Now I thought I knew what those were, but these are on another level, they actually hurt. They come any time, anywhere on the body, for no apparent reason. Lately they’re mostly concentrated on my last two fingers and arm for some reason. All these things change and change again, over time.
Paracosmia. Great word isn’t it? False smells. I randomly smell a ghastly chemical, petrol or paraffin like smell, nobody else can smell it, it hits me wherever and whenever it likes, can last minutes or hours. Thanks to my good ole GP a steroid nasal spray seems to be getting rid of that. Good, it was ghastly.
I get brain fog. I always thought that was an odd expression, and never really knew what it meant. I guessed ‘fuzzy brain’ or ‘sleepy brain’… but no, once you’ve had it, you know what it actually feels like. It’s like someone pressed pause on your thinking ability and you can’t will it away and just go back to thinking. Like a short circuit. Dots don’t join the dots. Thankfully this is less frequent than other symptoms, or I think I’d have given up the ghost. I’d certainly not have been able to continue working. My ‘memory issues’ (I already had some) have got much worse.
My digestive system wasn’t brilliant anyway (lifelong IBS), but the magnitude of symptoms in that department are now frankly ridiculous. Never a dull day, one way or t’other.
Shortness of breath. Yeah. I was doing brilliantly with my COPD, rarely ever used ‘puffers’ any more. Now? My body is a limp noodle and any exertion – apart from resulting in total ‘crash’ of fatigue and a more hurty body – means I’m puffing and panting just walking to the kitchen and back.
Muscle wastage, from lack of physical anything for 6 months. I even had an actual bedsore in the first few weeks.
Cystitis, repeatedly, something else I’ve not suffered for many years.
Red blood cell count – high. Didn’t mean much to me, but apparently it means my body is overworking at fighting, both for oxygen, and fighting off inflammation, germs, etc.
My heart rate – high, which has always been pretty good (60-70) …has been consistently between 80 and 120 bpm ever since C19. Sat still, on waking, before sleep, no matter what. It hits 120 after a slow and steady shower and dress in the morning.
Greater frequency of my heart arrhythmias.
I was right, I’d forgotten tinnitus. Random, shocking and intense.
…I can’t think of anything else right now, but I’m leaving this here, because I know I’ll remember something else in the next couple of days if/when it happens.
So yes. Long hauler. It’s a thing. It sucks arse. Not much else to say really… except, if you know someone who is telling you they’re still suffering weeks or months after C19? Believe them. Please.
Footnote 1: I’m still 100% grateful for my life, that I’m still here to tell the tale despite unlucky comorbidity, and that I’ve got frankly incredible support, a good home, friends and family, and for that? I’m genuinely the luckiest guy in town. I say again, I’m not writing this for sympathy, but as a matter of record for myself, and to maybe help someone else.
Footnote 2: I was not tested, because I avoided hospital admission and they were not testing anyone who wasn’t actually admitted in respiratory distress, in mid March. My GP, 111, and on another call the practice nurse all said yes, I have it. That’s good enough for me. I haven’t bothered with the antibodies test as 1. I know I’m medically rubbish at making antibodies (I’ve had chickenpox three times) and 2. the test have been shown to frankly prove very little; lots of positive tested C19 cases have come back negative for antibodies, and those tests are still at this point not reliable.
Thoughts drift as I rest, to pictures of a bright and full future, glowing with hard work and magic.
A new home between woods and sea on the south coast. A community, shared with beloveds and those who choose to work alongside and share with us a certain way of living and being. A place we can live, work, breathe, fulfill our dreams, be free to be who we are and share all that we do with others.
A place for holding circles, creating workshops, enjoying firesides, crafts, woods, sea, drum and song. A place for growth, spirituality and sexuality.
A studio for the arts. A workshop for building and creating. Rooms of our own for therapy, writing, working, leisure and pleasure. Fresh eggs, milk and veg from our own backyard. Dogs, cats and horses of course.
So much beauty to live, love, breathe and share. All whilst and for doing the work; therapy, social conscience/activism/justice, growth, peace, love, life and laughter for ourselves and for others.
Yes, we’re almost there folks. Next year. The right place and property will come. Because we’ve been here 12 years now, working towards this and because I never stopped believing and having faith.
I’m somehow more keenly aware of how blessed I am in this life lately. Revelling in unexpected sunshine and warmth, enjoying the scents and colours of new flowers and budding green shoots everywhere, and feeling my smile widen with the promise of Summertime teas in the garden and beach or woodland walks with loved ones.
However, it wasn’t always like this for me. In the past I’ve had periods of troubled times and life has been less than kind from time to time. Just like you, I’ve weathered storms of mental and emotional anguish, troubles both physical and emotional… and fortunately found my way out of those times, with the love and support I’ve been blessed with but also, with outside help from a therapist.
Not everyone has the support of loved ones. Sometimes even with the loving nurture of those around us, troubled times can feel simply too much to…
The breath of fresh air that this morning was for me, was a simple reminder of how that feels. The eyelid moistening relief. The tickle of an unbidden smile. Hope for the future. The allowance for room in each day to pause, to enjoy a moment as the present (both in time, and gift) that it is.
Having a period of time with a little of life’s challenges getting in the way of the smiles (loss, grief, fear/worry), we can forget these things, so easily. It’s called being human.
Stepping out into my garden and breathing deeply, smiling, enjoying… I was suddenly reminded that ‘this’ is precisely what I truly aim for with my clients who may be struggling. This moment of renewal. This love of life. This appreciation for all things. This ‘not’ looking at the garden through windows and seeing rain, stark, cold, empty, worry or fear, but actually stepping…
The seasonal joy we see prolifically on social media around this time of year is wonderful. For those who are sharing it.
That is unless of course you’re really not feeling the ‘Christmas cheer’.
This can be for many reasons. Perhaps you are alone for Christmas or New Year (as always, again, or for the first time). Some things that are arguably harder to bear at this time are loss, bereavement, relationship collapse, financial stress or perhaps a traumatic event. To be alone for Christmas is difficult, compounding a sadness that we may not struggle to endure quite so much, at other times. To lose someone and to grieve at any time is hard, but at this time can feel inexplicably significant. Worries and stress around work and money can sometimes be exaggerated by the pressures of those shiny boxes beneath the tree, not to mention the anxieties invited by stressed shoppers or overwhelming family gatherings.