Stairs Going Down by Circe Denyer (with permission)
I There’s a Hitchcock camera movement I remember. Made famous in the film Vertigo as James Stuart looks down a staircase, the shot went on to appear in everything from Jaws to Thriller to Breaking Bad. In a Dolly Zoom the camera tracks in while the lens zooms out at the same time. Life has been a bit like that recently. On the outside it still looks as if my life has shrunk, totally contracted, perhaps even more than it has for months. On the inside it keeps expanding more than ever.
I finally started seeing my NHS physio. I turned up a bit ambivalent, cocky even, not necessarily expecting to learn anything new. While she agreed I was doing really well with my own version of what M.E. practitioners call establishing a ‘base line’, she quickly showed me that while I was doing probably less than 30% of what you might in a normal day, it was still way too much. I had come to normalise always pushing right up to or over my physical limits, my body constantly feeling as if it was burning up. Apparently, with M.E. your cells go through exactly the same physiological process as a marathon runner has when they hit 'the wall'. Only we used up our adrenalin reserves long ago.
And so I began balancing out this very easy tendency to push, to do too much rather than less. We began the 20 mins a day rule. Never walking more than 20 mins a day, always attempting to walk that far most days, however bad I might feel. It can be hugely frustrating to adapt to, to plan and live your life to. There was a Saturday, missing yet another friend’s birthday party in London, my parents (who have a ridiculously busy social life) bounced off to a Ceilidh, that sent me driving off to the top of the escarpment and letting out a silent scream into the wind. Being chronically ill forces you to live surrounded by constant, daily reminders of a parallel life un-lived. However strong your support network, it can be incredibly isolating. But I’ve also become one of many occasional wheelchair users and the freedom of it has changed everything. I was finally able to visit a gallery properly for the first time since this began, dad pushing me around in the chair. I don’t think I’ve ever enjoyed art so much.
I prefer not going on about the symptoms of this too much with you, but it isn’t only the immobility that’s challenging. The harder part has been learning to live with the sea-sickness like wobbliness, sore throats, swollen glands and throbby headaches that have been an almost constant part of this since the last day of 2015. There are all sorts of explanations on offer. In the often mysterious world of M.E. (for this read ‘lack of research’), I’m open to everything until it's over.
I have to make life work as it is, regardless. I've chosen a secret date to work towards on this supposedly indeterminate sentence. Two months? Two years? Twenty? A lifetime? It will all pass. That is the blessed part, that is what I hold on to. Some days I master it ninja style. I've woken up feeling foggy, more slowed down than ever, aching all over. And after an hour of energy tricks, meditating (a life-saver) and a mind game involving a very hot then freezing cold shower for 40 seconds, I can make myself feel really not too bad at all.
(Let's pause here a moment for a little fist bump).
Other days I don't master it at all. Other days the most I can hope for is to best choose my method of surrender. I get leapt on by a large stocky gremlin who grabs me on the leap down and drags me to the dark. A few weeks ago the gremlin dragged me to a place so black that, while I know I would never be able to act on this, I understand again the feeling that drives someone to self harm. The frustration, the uncertainty, the deep, deep despair, the helplessness that comes with being unable to think or act my way out of this. I was sat in a beautiful poppy field on a summers day at the time and I wasn't even on my own.
My experience so far has been that however deep, murky and far reaching the darkness, it is always answered by at least the same amount of light. The truth is that my world has opened up beyond my greatest imaginings. Moment by moment, there is nothing that is in reality not get-through-able. Sometimes the old tropes are actually true: the only thing we ever have total control over is our response to whatever is happening ‘to’ us. And our responses, the meanings we choose, have the power to change everything.
But fuck positive thinking. I have no interest in pretending it feels fine when it hurts like hell. I seem to have chosen (or it has chosen me) diving in to whatever is really there. To see whatever it is, however it feels, as an invitation. When I have managed to stop fighting, endlessly fixing, controlling, the worst moments of this have often passed. Or at least they pass and return and pass again with varying degrees of intensity. On the rare occasions when I can get out of the way, when it almost feels as if part of me is giving up - that's when the worst moments often transform themselves into something different.
Another thing I find myself doing when it feels as if it's all too much is stopping. I pause, a bit how a toddler might mid-tantrum. I check a thought, 'is that really true?' I breathe, observe. I notice there are plenty of other feelings, sensations and small pleasures around too. We can choose what we focus on - that's the distinction.
So what is really happening? My body is temporarily unavailable while it undergoes a total-systems reboot. There isn’t a part of my body that isn’t in the process of being optimised. For now I may have to live as a young-for-my-age thirty something in a body far, far less mobile than your average 90 year-old, but the reality is that on good days I’m still feeling lighter, freer, clearer than I ever have been. And by that I mean not since I was a child. I’ve been experiencing how powerful energy medicine can be since my work with a practitioner began in October. I've had to avoid getting too wrapped up in the contradictions as various scientists and doctors disagree with each other as to what is really going on in ME/CFS. I've been happier dabbling in quantum physics to begin to make sense of the seemingly unexplainable.
And my heart writes daily love letters to Nature. Quietly watching the birds, finding a tree to focus on. And as the weeks go by, provided I keep my activity levels stabilised, I notice that deep feeling of exhaustion is subsiding. Walking increases to 25 mins a day. The other part of my 'systems reboot' involves the unconscious. And I see my cells spinning into action, all the energy I could ever need charging through me. My body working perfectly. I travel the world, climb mountains and jump into crystal pools below tropical waterfalls.
And everyday, in its own way, this falling apart becomes a coming together again.
Sometimes kindness wears a high-vis jacket and shouts through a loud speaker. Often it’s as simple as a glance, an understanding, a signal that means that this time, there’s no need to ask or to explain myself. That free lunch and tea offered after a body and mind melt-down in Pret having failed to cross London in time for a train, someone doing a whole tube journey just so I don't have to pull my own suitcase, someone in the USA offering out of the blue to pay for some of my treatment. Most of all it's the people who keep checking in, who will do what it takes to stay in contact and to see me, who don't assume that because of the circumstances I've lost the desire to be sociable, to live as much as I can live.
And the online community, the 'Spoonies', keep me in daily check as to just how fortunate I really am. Someone who can’t get out of bed to get a glass of water but who is going to have to swallow her painkillers dry. It seems we’ve all been there. I remember the terrifying moment at the start of this when I couldn't move my body from a sofa. And how I only just made it to open the door once help arrived. I wish I was there with her. I wish I could do more than simply tell her it will be OK. But she’s strong.
She knows she’s got this.
An ME/CFS Thriver