It's funny how differently I look at this picture now. It's the last day I remember without having ME/CFS. But also, as I went back into the sea to catch my final wave and ride it in to an Indian beach, the first moment I noticed something was really wrong. A deep and inexplicable hint of exhaustion I'd never felt before. I didn't know I would wake up the next morning on Jan 1st 2016 to such a different world. It started with a Glandular Fever-like virus that just.....well didn't go away. And morphed (insert your own sound effects here) into what I'm living with now.
I'm finally posting this 10 months on. I never felt the need to 'go public' with it. I certainly don't need or want the attention (I've spent a lifetime finding better ways to do that!). But I want to offer the reality of this now, it's definitely helpful for my friends to know. And soon there will be so much else to tell you that I actually think this will save us time....and save me repeating myself again and again.
2016 was probably the second most rubbish winter of my life. Two bereavements, including a long human rights campaign for a murdered family friend. We had a desperate search for Giulio before his unrecognisable body was found dumped by a Cairo roadside. He had been tortured to death for a week. Then Pierre, the larger than life musical mentor I loved who described himself as my 'manager' died of cancer and I was too sick to say goodbye. Then we found out my uncle who gave giant hugs was also terminally ill. I physically struggled to make myself cups of tea, wrapped in a blanket thinking this is what it must be like to feel ~~really~~ old! Mum had serious pneumonia, the car turned to scrap metal...
But as far as the illness goes, there's been so much richness in all of this too. A richness I can't always separate from the worst bits. It's such a cliche, but when it comes to having ME and what I've learned through it, I honestly don't know if I would change very much at all. More of that later.
The ME part refers to the way the mitochondria in your cells stop producing energy in a normal way. That great feeling when you go on a walk and feel your body almost kinetically generating its own juice becomes a thing of the past - as if your body is a petrol-less car that's already spent too long travelling at 70 with no gas left. Chronic Fatigue Syndrome is now the preferred term in the medical world as it encompasses so many other aspects of the illness, from your immune system going to pot to the neurological and psychological implications. It's very much a physical disease.
When it's at its worst CFS strips you of everything you've ever used to identify yourself with - your ability to act on passions, your work, human contact, socialising, being remotely physical let alone dance classes. It's you. With you. Feeling like utter shit. Working out if you can face moving from your sofa back to your bed again, or even lift your head off the pillow. For an ever expanding, indefinite period of time.
It took me away from so much of my art. There was a moment I remember fairly early on, just when I thought I could catch up on my recording again, that felt as if a giant hand from a B movie was throwing me back on my bed....my home studio just a metre away. And so far away. In hindsight the inner (melodramatic but real) 'NO!!!' of despair I think I said out loud also hints that deep down I knew how real the rupture was going to be.
I had this sneaky hope that there would be a time when I would be convalescing from all this when all I would do is be quietly creative, record and paint pictures... But that time hasn't hit just yet (but it's coming). The biggest challenge for so many of these months has been losing my ability to sing - to the point that certain sounds still no longer come out of my mouth. After 20 years of almost always having a concert in the calendar. The worst patch was probably the 2 months I kept trying.
My natural response to being housebound would be to "oh well, I'll just write a novel then".... Except for what this illness does to your brain. How can I describe it? It's like needing to run when you're being sat on by a bear. It's having a mind that behaves how a toddler might on Twitter (it took me so long to realise this part). With an epic hangover. All raw and soft and human and weak. But wired. With mega-flu. That was the greatest lesson - the only thing I could 'use' this time for was putting all of my being into being. And getting better. And bit by bit you accept things that little bit more.
Being chronically ill feels like a slow, seeping, messy trudge for much of the time. Just to complicate things you might even look fine. And be able to act as if you're perfectly well every now and then... In fact it often feels far less natural to act as lousy as you feel. And it fluctuates - last weekend I finally went out with old friends, a couple of days ago the kindest flatmate in the world had to drive me every few yards between the doctors, the pharmacy and the dry cleaner's. And definitely no going out. I feel sad that so much of what I am committed to and the friendships I was building in London have just slipped....and drifted... But there will be time.
My family, my siblings, my friends have been my cocoon and my bolt hole. Life carries on. There were many moments where I came up for air. I managed to go back to teaching for a while, I had some song ideas, made some puppets, woke up to May morning in a narrow boat. I did get my voice in enough shape to sing Nick Cave with my cousin at at his dad and my uncle's funeral in Northumberland before driving down to Glastonbury for our gig the next day. I even got to hang out on a very special recording project with the Faithless and 1 Giant Leap crew and some of the most astounding and loveliest musicians I've ever come across on a Greek island. I was in a bit of a mess trying to understand what was happening to me, but it was worth all of it. The truth is you come up for air a few times every day. Until you're just living with it. And it being ok.
Finally being diagnosed in August was the first turning point - the only thing that really mattered about the name for me was that it was on a doorway out. I finally knew what I was dealing with, and that for this to work I'd have to tackle it from every angle.
There are two jigsaw puzzles to CFS. The first part is medical. I'm well on the way there now. And there's so much online - you can google and find out that your condition only has a 10-30% recovery rate and can have symptoms that are far worse than HIV (all of which is true). Or you can focus on a whole world of support and understanding (I recommend Toby Morrison and The Optimum Health Clinic for their pragmatism).
In September this weird, anxious, locked, feeling of loss (which could easily be mistaken for depression but probably wasn't) went away. I think I had been grieving the life I knew as much as anything. A while ago I started to describe myself as 'recovering from...' , which is very different from attempting to act as if this isn't there.
By October, I had struck gold with the right advice and found the professional help that has started to make all the difference. I'm hoping to stay a few months ahead of the NHS (my first specialist referral still isn't until 29th November).
I have no idea how far there is to go but it feels as if this is the home stretch. I've put my sights on January for fully dancing, singing, swimming, walks, tube journeys, social events and normally functioning Jessness - but I have to be ok with it being April 2017, or 2018. I might be monitoring my activity for some time. There are a lot of unknowns but it has all become so much more liveable with. And there has never been a doubt in my mind that I will recover 100% from this.
The next part of the jigsaw puzzle will take longer - but it's essential if I'm going to get over this for good. There is a consistent pattern of givers, helpers, high achievers, and the creatively driven having a predisposition to the syndrome. I may be some or all of those things, but people who know me also know that I've been meditating since I was 21, lived more healthily than many and loved (or at least needed) a finely tuned sense of balance. At some point in about 2001 was advised never to have coffee again after a Barcelona espresso left me partying for about 3 days (and I didn't - though I tested an Americano in 2013, just to make sure). I needed my friend Roger to remind me the other day, "Jess, when I think of you I think of someone healthy, someone with loads of energy, someone sparky ". I may have CFS but it doesn't have me - I want you to know am still very much that person.
Despite all of that, I have a funny theory about CFS. Something far more subconscious. It's about the beliefs you have encoded in your cells. It's as if you've been living your life to an equation that doesn't quite add up. And you do the very best you can with it all. You play full out with everything you've been given. It's no one's fault. Perhaps you even do more than your best. Until it stops adding up any more and the engine has no choice but to stop. I'm still decoding that part. Maybe we all have an equation of some kind to live out.
The likelihood is you will never fully master it, never get it right. And that's probably the whole point. I've become much better at doing things badly and failing. It's a game you win in the most infinitesimal increments. I've had to re-learn (and will keep re-learning) that your value as a human has far less to do with the things you create or 'do'. Nothing is as important to me now as who I'm being in any given moment. Probably that and the depth and quality of my relationships and how good you can get any human interaction to feel. Or even simply, how does it feel?
A couple of weeks ago I was playing fantasy jobs, things that kept coming in that I clearly wasn't well enough to apply for. It wasn't until the evening that I joked about a teaching post in Mallorca working three hours from home in the afternoons that came with a flat, a landscaped garden not far from the sea and a car....and ideally for someone with a background in music and art. More importantly I just knew this was a student I was meant to teach. That was a 'can't leave the house day'. I applied anyway, was open about my condition, got my doctor's support and landed the job! I start on Monday. My family turned up at my flat on Sunday with boxes and plastic sacks and have 'moved me' out!
I'm now saying goodbye to London after 7 years, feeling fortunate, jumbled, still balancing it all (just) but far more like myself - moving countries with CFS. And except for the hours I'm teaching will probably have to do it all pretty clumsily. And that's ok.
If you haven't heard from me or seen me out and about for a while do say hi. I miss you. This is why.
An ME/CFS Thriver