on chronic fatigue and being increasingly anxiety-hardened

You do it to yourself, you do/And that’s what really hurts

Is that you do it to yourself/Just you and no one else

You do it to yourself

Radiohead. 1995. Just.

 

That there/That’s not me

I go/Where I please

I’m not here/This isn’t happening

I’m not here/I’m not here

Radiohead. 2000. How to Disappear Completely.

Since my Mom passed in April 2013 the tinnitus has been dreadful. The tinnitus, and the sinuses scarified. From my ears across my cheeks, and running above my eyebrows. My sinuses feeling like someone had been scraping at them with a rusty spoon. And so fucking, cripplingly full of something. Pressure. Unnaturally full and irritated. So that the something, the pressure in my sinuses and the tinnitus and the soreness merged. Merging in my sinuses with a constant ringing in my ears. And a desperate, cloying, black fatigue in my soul.

A desperate fatigue in my soul that made living and surviving a trial. Because when you are used to being a bit manic, in always moving and never sitting and never being but always doing, fatigue is the very worst thing. The inability to do and to prove myself over-and-over again. The forced labour of sitting with myself, and imagining my bodily failure, the realisation of my uselessness, rather than the joy of being still. The end of days.

And I remembered that my breakdown of September 2000 was preceded and signalled by a virus, and triggered by the fury of living and working too fast, and accompanied by an acute attack of vertigo, with terrible chronic fatigue and sinusitis following in its wake. The days spent bedridden and railing at my mortality and the weakness of my flesh. The days when walking across the bedroom to the toilet was exhausting. And the panic that followed and swarmed from December 2000 to, well, now. The insidious panic that swarmed and found the cracks in my psyche, and found a home in the cracks inside, and refused to leave. And the panic that was always there inside; until the inside cracked under the pressure of a manic life; so that the panic leached out from the cracks and into the pores; so that no amount of running could sweat it out; and no amount of scrubbing could remove the stain.

And I forgot that I spent five years recovering. That I spent five years trying to reboot my health and my life. A kind of forced recovery to be what I had been, only minus the panic and the dark thoughts and the brooding. Five years of trying to recover my fitness; by walking and t’ai chi; never knowing whether this five mile walk would leave me bedridden for days or just okay. The apparently intermittent nature of the fatigue meaning that today’s walk up five flights of stairs might leave me feeling fine tomorrow; but tomorrow’s walk up five flights of stairs might leave me unable to work or think or do or be for days on end.

Bedridden. Russian Roulette every day. Every. Desperate. Day.

And always, I now realise, the tinnitus and the scarified sinuses were a signal in amongst the noise of the fatigue. But I treated them all as separate and compartmentalised. The body and the mind compartmentalised. So I saw an acupuncturist for my sinuses. And I saw a counsellor and a therapist for my panic. And I saw a GP for my vertigo. And I did t’ai chi and I read self-help books and I walked in order to find the solution. The one thing that would reboot me; the one thing that would heal me; the solution that would help me to start over again.

And it took until the Saturday of the Edgbaston test in the 2005 Ashes before I knew I would recover and be okay. A walk on Moel Siabod. Falling into a peat bog up to my middle; then going in up to my neck; then being pulled out by Wheelist Wheels and Jane and Jo; then refusing to turn around but climbing the mountain. Fuck you. And the next day being able to get up and watch England draw level with Australia; with no ill-effects. Just patched up enough to go on my way. Although maybe I thought this was less a puncture repair than a full service and ready-to-go. Warier for sure, but back. Back.

And I swore to myself that I would never drive myself to a breakdown again. That if I broke again, I simply couldn’t, wouldn’t be able to cope with the psychological damage again. That if I broke again then I would kill myself. Because the effort it had taken to rebuild myself; to live again; had been my everything. For five long years. And frankly it was too much.

The scars were so deep so that my truth was that another breakdown equalled game over. I couldn’t face those inner daemons running feral again. I was not. I am not. Strong enough.

And in Sick and Tired, Nick Read argues that chronic fatigue, accompanied by tinnitus, irritable bowel, sinusitis and whatever else

is another personal strategy to cope with the contradictions and complexities of contemporary life… to give up the struggle altogether… a state of sheer exhaustion, apathy and inertia, like somebody has pulled the plug and drained out the very essence of life.

He argues that patient histories reveal the extraordinarily-driven nature of sufferers’ everyday lives, focused upon exacting personal standards for performance and high levels of responsibility throughout a life. The result is an overextended, overcommitted lifestyle that is breathless and manic and focused on perfection. And in that period up to September 2000 I had been running an education and technology project in 11 universities, and living in Darlington, and trying to write and to publish, and setting-up and chairing the Walsall football supporters’ trust, a six-hour round trip away, and trying to maintain an active life beyond. Too much responsibility; with everything having to be 100 per cent and perfect; or I was a failure. And my body having asked politely for a while, through increasing levels of tiredness and that inner voice that says “slow down” and the occasional bouts of dizziness, eventually shut down. Apparently out-of-the-blue. Like being hit by a bus.

Only the warning signs were there all along. But I ignored them and my inner voice and kept running. Because what else was there to do? As Read argues

Such people often sleep poorly and seem quite literally to work themselves to a standstill, but instead of being able to negotiate some help or relief in some of their roles, they let their illness do the negotiation for them.

And in the aftermath I had blood tests for the fatigue. I sat for hours with a towel over my head breathing in a steam bath to try to clear my sinuses. And I wondered why I was breathless, and never considered that it was the weight of responsibility and despair settled in my chest. And I waited for the dust to settle and my soul to recover. Just enough.

And recently I have been thinking so much about that time of my life. As I tried to reboot. Because the aftermath of my Mom’s passing was accompanied by such awful vertigo, and such dismal tinnitus, and such pressure in my face, and the cloying fatigue that makes existing a trial and survival from day to day the only thing. So that hope was gone; run out of town by the return of chronic fatigue. And the frustration was that I had forgotten the lessons of the last time/the first breakdown.

I had forgotten that the responsibility of sorting power of attorney and end-of-life decisions for my Mom, and working our whether my Dad and sister were okay, and liaising with consultants, and communicating with a disparate family, and driving 50 miles twice a week to visit a critically ill relative, and writing project bids, and managing a team, and presenting at conferences, and preparing an application for a Chair, and being a National Teaching Fellow, and writing, and being in therapy, and living my life, and riding my bike, and being a husband, and everything else, would rub my soul until it bled. Rub my soul and the fabric of my being until they bled.

And in the bleeding the hope and meaning bled out too. As Read argues of “Jack”

He had worked all his life to compensate for the feeling that he was never good enough, but in doing so he created a false sense of self that had no real meaning. Confronted with that dreadful realisation, he suffered a physical, emotional and spiritual collapse.

The focus on spiritual is critical. My chronic fatigue was more than physical exhaustion. It was and is the exhaustion of my soul. My tinnitus is my soul ringing in my ears. My soul singing at the pain of it all. And my sinuses, inflamed, are a brutal reminder of my despair at and in the world. Forcing me in combination to ask, who am I? Do any of the things I have achieved or done or been really matter? And in the midst I lost hope. Laid bare, all that was left was the courage of an eight year-old boy to get up each day and to try to be. The courage of an eight year-old forcing the forty-three year-old to confront his lack of faith in himself. Courage and faith before hope. And maybe courage and faith before justice and hope. The hope that peace will follow.

And there have been a series of qualitative shifts. As I read Sick and Tired and realised that until my emotional and spiritual health was rebalanced I would not and could not be well. The recognition that I needed a better solution than this pill or that nasal irrigation or this nasal spray. That maybe it wasn’t about what I put into me but what I removed. And about how the forty-three year-old could ask for what he needed so that the eight year-old could be released.

So I realised that my NHS Doctor is amazing but that medication and rest were not a viable, long-term prescription. That chronic fatigue and sinusitis needed a more holistic treatment. And that I needed to stop outsourcing my health and welfare to various doctors or therapists, and to stop fetishizing the NHS or doctors or therapists in the process. That I have been ill for 14 years, or maybe for 43, and I am at one end of the bell curve, and need to own that for myself.

So here was the prescription and the thinking and the plan of action.

I need the anti-depressants (I think) and I trust my NHS Doctor, and the Flixonase seems to work, so let’s keep that for a while.

I was recommended to see another NHS Doctor who didn’t think that my sinus problems were food related. This didn’t seem to be right. My gut was telling me that this was not right. But I decided that I needed to push for an ear, nose and throat referral, so that I could get a scan of my sinuses, so that I could eliminate any physical/anatomical issues. So I pushed.

I was recommended to see a private GP about potential food intolerance. And she took a history and listened and recommended some IgG tests. And she told me about the lack of peer-reviewed double-blind research. And she told me to go away and read about it. And she told me to talk to peers. And she treated me like an intelligent man. And she told me that none of this would work if I wasn’t working on my core relationships, including with myself. And she told me that we needed to stop putting things in and consider taking things out. And the interesting thing is that my gut was telling me to stop eating wheat and dairy, and the tests told me the same, plus soya. And my gut was telling me that after 25 years as a vegetarian, I needed meat. Organic, high-quality meat. And it interests me that all along my gut told me these things, and that Joss Winn gave me the courage to back my gut, when he told me to see the GP and to get the tests done “because you’ve been ill for 14 fucking years Richard, and this way you’ll have some more information to make decisions about your life.”

And I found a new faith in my friends.

And I found a new faith in my therapist. A qualitatively new faith in my therapist.

And I found the beginnings of a new faith in myself. That I could ask for help and be assertive in asking for what I need.

And within two weeks of my wheat-free, dairy-free, soya-free, egg-free, beer-free, organic meat-and-fish loaded, fresh fruit and vegetables, oat-cake/rice-cake and hummus diet, my sinuses are 70 per cent better. And I’m riding again. And the tinnitus is so much better.

And what I am left with is the pain in my sinuses when I overdo it. And this happened this week. When I rode for the third time and then ignored the eight year-old who said “we’re tired. No more for now. Stretch and a bath.” So I did some weights and had a bath, and then walked too far the next day. And then was hit with fatigue and someone/me scraping at my sinuses and the ringing in my ears. Hit full-on by the same bus. So that I struggled to get out of bed. I ignored the voice and was made to pay. Bedridden, just for a day.

And my therapist told me that I sounded manic. To calm down. And she was right. I could feel my circuitry being overloaded, so that the wrong music on the radio threatened panic. So that the drilling outside threatened overload in my cortex. So that my own internal relations were stretched and skewed. So that I almost lost faith in myself as the daemons ran feral in my mind. Because I had never sat with my fatigue. I had never respected the inner voice of the eight year-old; to care for him; to self-care. I had always run and run and run and broken. The drive to proceed and exceed tripping an urge to be always-on.

And now, 24 hours later, the panic and the overload has subsided because I have found the courage to reassert faith in myself. To get some justice for the eight year-old by honouring his voice in the future, and to give myself some hope that even in the darkest moments there might be some peace. I had thought about what I do to myself, and how that hurts. How that is a form of self-harm. So that if I trust my gut and the inner voice I might avoid foreclosing on the future.

<breathe>Courage, faith, justice, hope, peace <breathe>.

And I realised that I am increasingly anxiety-hardened. This is my wisdom. In the midst of the renewed panic of “fuck, fuck, fuck, what if I break again?” I realised that I would survive, and that it would not be the end of my days.

This I see afresh how this recent fatigue is a form of self-harm. A witnessing of my own self-harm. The realisation of my own inability to self-care, at times. And it has shown me that I need to listen and respect my self. That I need to stop repeating my past in my present. That my fatigue and sinusitis and the fucking ringing in my ears are reminders of past trauma that I don’t have to reproduce time-and-again.

And I begin to wonder, as I am anxiety-hardened, what it means to be anxious inside a system that reproduces and actively encourages anxiety. What does it mean to be already anxious inside the anxiety-machine? What does it mean to suffer with chronic fatigue inside a system that encourages and demands and accumulates overwork and always-on and “fitter, happier and more productive”?

I feel that this is increasingly about values and humanity and our innate human usefulness and solidarity, in open and politicised opposition to the universe of value production and accumulation. And the recognition that this is itself about/a manifestation of power and powerlessness. Fatigue and sinusitis and tinnitus as a concrete manifestation of despair and powerlessness and abstraction. As Maggie Turp argues in Hidden Self-Harm, the issue pivots around enabling voice, and voices in association, to be found and heard and respected. Respected in faith and with courage. And this is a spiritual reckoning, and one that is less about outsourcing the power-to create our lives so that living becomes survival, and more about taking ownership for the decisions and realities of our own self-care.

And yet this self-care has to happen inside a system that reproduces our powerlessness over our own use or worth or value or time or activities. A system that reflects and echoes past traumas, which are rooted in our previous powerlessness. And these acts of powerlessness are repeated ad nauseam until our souls bleed. Our anxieties around our performance and our labour and our value are a symptom of our distress at being and doing inside this systemic anxiety machine.

Here I return to the emotional dissonance in our souls, between our wish for a concrete, useful life, and the abstraction of everyday work.

The constancy of the destruction of our concrete world in the face of our enforced and enclosed abstracted lives for work, make those lives “increasingly muted”. How is it possible to become for ourselves, as opposed to being for the abstract destruction of our concrete selves in the countless self-harming activities we witness and reproduce and ignore every single day? How is it possible to end these culturally-acceptable self-harming acts, every, single day?

And Donald Winnicott writes in the Concept of the Healthy Individual that

Health here includes the idea of tingling life and the magic of intimacy. All these things go together and add up to a sense of feeling real and being, and of the experiences feeding back into the personal psychical reality, enriching it and giving it scope.

This is not my manic overload, or my medicated sinuses, or my outsourced intervention, so that I can be productive in an abstract sense. It is my concrete, humane power-to listen to my gut instinct and to stop poisoning my body with processed and refined foods. To listen to my eight year-old as my governor, and to respect and have faith in what he needs. To attempt self-care as an anxious person inside the anxiety machine, by practising being true, necessary and kind to myself. To take a more wise, anxiety-hardened path that accepts my good enough nature and my usefulness and my worth, and refuses the clamour to abstract and foreclose on my future. That seeks to produce another kind of life. Productive of values rather than value. Productive of courage and faith and justice and peace, rather than the ringing of my soul in my ears.

To stop scarifying my sinuses. As an act of self-care. A pedagogical act rooted in self-care.

To stop. As an act of self-care. A pedagogical act rooted in self-care.

To be. As an act of self-care. A pedagogical act rooted in self-care.

You can try the best you can. The best you can is good enough.

Radiohead. 2000. Optimistic.


7 Responses to on chronic fatigue and being increasingly anxiety-hardened

  1. Thank god. I was really worried about where you were going with this Richard. What you write resonates with most of us these days to one degree or another. There are many survival strategies – self delusion, cynicism, the individualised self as project (which probably involves elements of the first two),subversive accommodation (possibly an oxymoron). Looks like you’re getting a handle on it – hard won wisdom and a rediscovery of the absolutely essential dependence on friends. The system implies and wants us to think this is something individuals must deal with themselves via a network of largely contractual, marketised and monitised relations. Quantify yourself, quantify your relations, and account for yourself. Nothing to do with love and respect, intuition and emotion, or soul soothing sociality. Take time out. Visit. Any time (well almost!).

  2. Thank you for sharing this, Rich, I found your account courageous and moving. Incidentally, the renowned Father Ted Research Institute found conclusively that Radiohead might not be over-helpful with this kind of thing…

  3. Richard, I truly admire your honesty and courage to talk about your own trials of life. I believ many of us are struggling with similar feelings to different degrees. What is it about us people, to want to prove that we can achieve the nearly impossible, juggle and keep all the balls up in the air, never be satisfied with achieving one thing, but wanting to add at least an additional challenge. Stretches ourselves further and further without listening to our bodies and our souls, what they want and can cope with, because we want to prove to ourselves, or maybe other people in our lives, we can do it all. Keep fit, be successful in our career, have friends and be a good friend, be a wife/husband, mother/father, or just a great partner. Why can’t we just enjoy life as it comes. Enjoy every day as if it was our last. And just follow our gut instinct, as generally deep down we know damn well what it is we want and need. We just need to stop and to learn to listen. We override our heart with our head all the time, as that is what society has taught us.

    Stop, turn of all the background noise, and carefully listen to your heart and gut, they know best. Don’t be too hard on yourself, give yourself some slack, you’re doing great. You don’t need to prove anything to anybody. All you need to do, is be true to yourself. I know easier said than done.

    There is always a spare bedroom at retreat Bato – South African air is extremely good for the soul….it shows you the way of what is truly important 😉 xxxx

  4. Pingback: Calling it out | Music for Deckchairs

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