Something unexpected happened last Thursday and things are very different. I want to take you straight there but all the signs and struggles on the way are part of this too.
You’re unlikely to feel sorry for me any more. I get to wake up in streaming sunlight and put a bikini on before swimming in the sea, regularly, into December. I really miss people but I’ve found a peace here. My first few weeks in Mallorca were just getting to the end of each day - work, peeling myself out of the car, bed, work and rest…. As things have worked out I'm teaching in a large organisation and putting on a normal front for three hours every day has helped. The teaching can be tough but it’s probably the most creative I’ve ever done. I get to live in Spanish again. They could have added ‘perfect for someone with ME/CFS who doesn’t know how far they can walk on any given day’ to the job description. The singing voice and any real vocal stamina hasn’t come back yet but I’ve started trying again. It will.
The bulk of the bear has lifted. I no longer slug around in toxic soup, or if I ever do it's much thinner. I won't bore you with the first two to three key stages of my treatment, except that they've been a success. Gradually - and it's been the most painstaking physical and mental process, I've been able to do more and more without the symptoms getting worse. I’ve been very lucky, if I hadn’t found the help I had, I would have only had my first specialist NHS referral a couple of weeks ago.
The support, the love from friends and strangers I've connected to from my last blog piece helped me get here too. Every message, every Skype call feels invaluable. It makes me wonder why it took me so many months to 'come out' in the first place. A number of people talked about a treatment called the Lightening Process which I'm still considering. I'll be pondering the mind over matter conundrum for a while... While I've never wanted to bully my body into getting better I'll happily lead it to where I want it to get to. But the idea that there would be a moment where I could push through the physical limits of my body with my mind more completely stayed with me. I spoke to a CFS expert in Australia about where I was at with the illness. His response was that he didn't expect to have conversations like this with someone with ME, that I was pretty much on track. That if I was scared the illness was about to condition me more than it should in any way then yes, now really was the right time to push through it.
I tried a Pilates class down the road about 4 weeks ago and, rather embarrassingly burst into tears about 5 mins into attempting to move. All sorts of reasons... the memory and very present fear of what the consequences of exercise could mean, how hard it was because of the state my muscles were in. A wonderful instructor (Rob, from San Diego - this corner of the island reminds him of home) was firm: "You're not going to leave this class. You're going to do just 5 of everything. Whatever you do you're going to stick out the whole class...". And so I did.
About two weeks ago, I felt like I wanted to dance. Definitely not a new thing... From the early stages of this I've had moments where I'd enthusiastically get ready for the day ahead, bouncing around to the radio, only to be forced to lie down again for a few hours the moment I'd got dressed, like a betrayal. But this time rather than collapsing when I felt shattered, I had a shower and danced. And felt better for it. Something was shifting. I caught myself turning the music up in the car and head banging to Indie Rock from Madrid. There was a time when certain music used to physically hurt.
Tuesday was a local holiday and I had my friend David from London staying. We had directions and set off to a little local peak called Mount Galatzo. It was a perfect day, but was made up of about three comedic false starts of gentle walking and we only found the right setting off point once it was too late. There were some funny moments. The stress of the car tyres spinning on a gravel road above a precipice, unable to get traction. I had a blood sugar level crash around 6pm and we ended up being saved by some villagers from Puigpunyent, eating paella around the campfire, exchanging numbers to help them press olive oil in autumn 2017. But throughout all the little challenges, the idea that the illness wasn't going to win or condition me became even more of a mantra. We kept looking at each other and saying...'this is what a normal person would be doing'.
The next day I did 7 of everything in Pilates, went to work (where I carried a child!), went to the beach quickly before going out to dinner. Even a few weeks ago only one of those things would have been an achievement.
I had Thursday (another local holiday!) to myself. I pottered around the flat not feeling too great. But something about the mountains was calling me back. No one I knew was free but I felt like being up there in all the stillness and green again. I didn’t have a clue what I was doing…I found myself dodging the potholes in the mountain road and asking, expecting to do nothing more than potter about, to be guided somehow. I was soon up past the setting off point, breathing in the peaty-pine air where the grey-green lichens mop off the branches. Then higher, looking down over near-vertical dry stone walls, Palma in the far distance. I knew I was by myself and that it was a bit late in the day to be setting off. I asked a few walkers on the way down and no-one seemed to bat an eyelid about me starting now on my own. And feeling this was ok, even simply enjoying the feeling of moving so much, I kept going. And I certainly didn’t have to do it but the idea of seeing a better view from the top, and I’ll be honest, this cheeky little thought, 'wouldn’t it be totally crazy and freaking amazing if I ended up climbing the whole thing’ kept me going.
The climbing became harder and the last remaining walkers on the way down started to trail away. I felt newly oxygenated blood rushing though my cells as if for the first time. Something is so different. It’s OK. It doesn’t hurt any more. My heart pounding. Remembering all those times a one minute run to a train would send me to bed for a week. I can do this now and I will be OK. The last 40 mins or so was the hardest. We're talking about a little peak by the way. It's normally 1hr 30 mins up. But this was the hardest mountain I think I might have ever climbed in my life so far. A 341 day-long mountain to climb. I really wanted to know how it felt to use my body like I used to again. I so desperately wanted that feeling. It almost felt as though there were systems in my body suddenly being revved back to life by my heart and soul. Heart pounding. Knees wobbling. But you’re safe Jess, it's going to be OK.
I went along the odd goat track by accident, lost my scarf. I could see the craggy peak now, though it took a bit of working out how to get up it. Many moments of 'What the hell am I doing???!!' I don't even remember what my body was doing, just the physical effort. Arms, legs, arms, legs. Chanting to myself. Throwing off the year that's gone, boulder by boulder. The idea of what that view would look like. My thumping heart and knowing that finally this level of exertion was going to be OK. Or not. But I just had to try. Just had to push through. There was something new and wonderful about the way blood was now surging around my body. For the first time this year, it felt healthy.
Eventually after getting a bit lost, I got to the peak with a faded Tibetan flag wrapped around it and a welcoming plaque. I almost stumbled to it….. and crumpled. Tears. It was over. Shaky. Tried to ring someone, Dad, message Jude, anyone, to tell them what I'd just done and by now I was almost shaking too hard to hold my phone. The mist was pouring in, thin wisps of drifting clouds. You'll get the view in a moment I thought, just stay here. No view. Me on a mountain top. Thick grey mist now. Collapsing. It’s over. You did it. You're going to be ok. Wait….the view will clear.
And then I started thinking…hang on a minute. You're on the top of a mountain on a December afternoon. You've got ME. You can’t see anything. My body temperature started dropping. I wolfed down an apple and some almonds. Only... I just got myself up here which probably means I don't have ME any more. Hold on. Wait for the view to clear.
The sun was a small round glow behind the cloud to the right, in front of me. And then my eye caught something and it happened. Somehow the sun formed a completely circular, small and perfect rainbow to my left, and bang in the middle of it was the silhouette of the peak with myself sat on it. It was something I felt as much as saw. I crumpled a bit more. It's really over. It's over. I did it. It faded out of view before hovering back again for a few more seconds. It was exquisite. It felt like the thing I'd climbed the mountain for.
I waited for the view some more. But I was starting to feel a perfectly sensible, more heightened level of... well it wasn't exactly fear. I knew that this was risky. I'm on a mountain-top on my own and I don’t know if I can make it back down. I thought overdramatically (or not) of all those climbing stories of how people died on the descent. And then my phone died. I think that was the last straw. I could just make out the path in front of me and promised to retrace my steps up exactly, setting off as fast as I could.
A little bit further down the mountain the sky cleared. Did I rush down too soon I wondered? And then I stopped. And breathed. And created another moment just then. And I remembered I could just keep doing that again, and again. Intermittently between my mind chattering like crazy. Endorphins and adrenalin in overdrive. Stop. Breathe. I made my way down much more calmly. And it dawned on me that I'd left my ME and CFS at the top of Galatzo. I was lighter. It was gone. Just me and the mountain. My muscles and knees were like jelly they were so de-conditioned but there was this new strength there. Something felt very different. This is what my body used to feel like. I found the scarf tangled up in a thorn bush. Just me and the rocks. Purple-orange late evening light on Mediterranean stone. Lighter green pines on deep curtains of greeny-black velvet. The air sweet and thin. It got easier and easier. Strolling. I could only just see the car in the darkness when I got to it and drove the twisting mountain roads home.
And back that night, with someone from home in tow to celebrate, it didn't stop. We went out to dinner, talked till late and I DANCED! As if whatever I did, nothing would break me any more. And I was fine and went swimming in the sea the next day.
I would love to tell you that that really was it, that my body responded completely normally, happily ever after but it’s not quite like that. I did pay a price and a bit of a rough week followed. If you have ME perhaps don’t try all of this at home! Just listen to what your body needs to tell you. Following the proper pacing advice is still likely to be the thing that helped me get to the foot of Galatzo in the first place. But overall I’m still stronger, it certainly did me far more good than harm. I can feel it all there just below the surface. This is still a tricky stage of CFS to navigate, but nothing can change the fact; I can climb a mountain! It’s as if I reset myself somehow. I don’t know and can’t completely control when this will be properly over. I’m not obsessed with that now, I’m just enjoying the feeling of my body coming back to me. For good.
Sometimes as my mind gets sharper, I feel old worries creeping in through the newly opened cracks. What happens when this contract ends? Is this move to Spain permanent? Then I remember the only security we'll ever have is knowing you can handle whatever life chucks at you. That I could loose all of this newly returned luck and beauty and still be OK. And still be this happy.
And this part might be too much for your cheese filter (this story already has a real life, unusually shaped rainbow in it!) but as it’s true, I’ll tell you. A year ago I’d written and performed a song with a gospel feel at a friend’s workshop and got the crowd singing different sections of the chorus. She’d just asked me to record it again, so it was fresh in my mind and kept me going the whole way up. The title? 'I’m Ready for a Miracle'.
Someone just asked, what’s next? I answered something along the lines of, ‘More mountains. Enjoying life. Keeping it spacious. Getting fit. Relaxing. I’m not quite sure and the best thing is, it doesn’t matter’.
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.