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’.
An ME/CFS Thriver