I started this, I promised you it would be real and that's what you're going to get. And I'm going to carry on. And at risk of being totally self absorbed, writing and articulating it all is really helping. The outside world got so much darker this week. I'm not strong enough to march and shout for now, so part of my own fight will be to keep digging deeper.
There are times, perhaps even the vast majority of the time, when life with ME has become a new sort of normal - and yet part of me wants to challenge that. I really don't think humans were designed to flop around like beached seals in a hinterland where the deepest exhaustion and illness meet. The reality of this can be pretty miserable. While a good deal of the time I'm totally accepting and ok with it all, there are moments when life drags along the darkest dregs of human experience. I know that like anyone I was built to be joyous, exuberant and expressive. Or at least quietly happy. And it's so natural to associate happiness with having energy and vitality. Much of the time I have neither. Perhaps this is some kind of bizarre mood gym where I'll come out of all of this having choreographed the most perfect dance between fighting something with all my being whilst at the same time embracing it, totally, as it really is.
I’m back in the UK in the small Oxfordshire town and home I grew up in for the UK part. I am indeed hunkering down. I’ve had the place to myself for a couple of weeks and I’m rapidly burning my way through the fire wood. It feels perfect to be here despite the dullest and dimmest January murk. A world of dark, sodding leaf mulch. It has its own kind of beauty and I feel a new strength coming from the earthiness of roots. A lot can be born in the darkness. I'm much nearer my siblings and soon my parents too. I still find being sociable tiring but like many people, I've never been good at spending overly long stretches of time on my own. I will hit the right balance. I still know that time, hugs or even phone calls with the right people are my medicine. I get physically drained looking after myself and felt miserable about it last night. Only a few days until the house is more full again.
Leaving Mallorca with my stuff and a heavy Martin guitar was shattering. But I do have some amazing friends - the kind of friends who book flights to Mallorca simply so you don’t have to fly home with everything by yourself. How uplifting is that!? I loved the bright white sun on the water, had all the help I needed moving out, got some kind of closure as far as work went and have no doubt I’ll be back again and again and again. I miss the light, air and sea already.
Recovery wise, we had that steady, sometimes elated flow of progress leading up to Christmas and this is probably just a bit of a dip. I've seen two really good consultants which makes all of this a bit more real, though I've heard a bit too much of "you do understand there isn't currently a cure, don't you?". Not that that dents any thoughts of recovery. Hopefully the physio and occupational therapy will help. My NHS CFS service is in the process of being drastically cut so it will all take longer. Apparently though, there isn't really anything I should be doing differently. That was the question I pressed answers for most.
I don’t even know how I managed to work the hours I did now, let alone climb a peak. I’ll be honest with you; I’m so deeply, deeply tired of being tired. In other news I had a patch last week where I kept jumping up and down saying “I don’t feel ill, I don’t feel ill, I don’t feel ill!!!” Because, while I can't say I feel well, I think I can cope with the tiredness if it does’t actually hurt any longer. Much of it has stopped hurting. I know that we forget to celebrate the small victories, that it’s so easy to miss the fact that like all those warrior snowdrop buds waiting below ground, my body is almost always in the process of coming back to life.
I did my tax return. I caught the train to Oxford for a vigil to remember Giulio in his favourite pub. I can do a full pilates class even if I spend the rest of the day utterly and completely wiped (this is probably a sign that I need to tone it down a bit, though it often feels good at the time). Then I find it curious that even with you now I'm constantly measuring progress in terms of the actions I've completed. CFS forces you to live a different reality in terms of how much you're going to physically 'do' in any given day so perhaps that makes perfect sense. Perhaps it helps me to give you a better picture of where I'm at. So I'll keep going.
Singing: no more than about one or two complete songs a day. That one still has the power to catch me out with a little tug of despair almost every time. I'm curious to work out why it's still happening. Why so often it's as if that vocally expressive, communicative part of me is more shut down than anything else. The part of myself that is the source of so much happiness. I miss the feeling of doing it more than anything. When I get it right I dig down into a place of stillness instead. It's perfectly possible to reach a state with this where everything is exactly as it should be - which isn't simply positive thinking, it's actually closer to reality - it's all there really.... is. As you can see, I'm far from always getting it right.
I know I’m impatient. I know I still need to chill out a bit. I know this is like turning around a giant oil tanker. It’s long and slow and like waiting for your bones to heal, it’s simply taking as long as it takes. ME fluctuates and while it might feel and look as if I've taken a step back, I'm still better in other ways than I was only a few weeks ago. This condition still utterly baffles me. A top consultant I saw recently told me, "don't worry, this baffles us too". I accepted it as a part of me (for now) a while ago. And yet there is something in this that perhaps I’ll never be able to accept. That after all this time, after feeling this much better, that my body is as limited as it is.
At the moment I have about two, thirty to forty minute bursts of moderate activity in me a day. I moved some boxes of possessions into a loft room (I’ve been moving them in stages over the last week), then rested enough and later, with a bit more energy in the bank rebuilt my Nord piano ready to record tomorrow. I am going to be recording. Slowly but steadily. I’m writing music and songs again and going back over old material to do some re-writes too. The melodies and arrangements are all there, bashing around inside. Outwardly, it's happening at less than snail's pace (and so it feels). What I'm producing couldn't be more minimal. The game I'm playing right now is to be ok with however much or little I do create or 'do' each day. Funnily enough I think I inadvertently spelt out my game plan in my first post in November: to be as here as I can with it all, wherever it takes me. A kind of process of presence. Whether it's dull or despairing or a burst of what I used to call normality - which these days often comes with its own burst of joy.
An ME/CFS Thriver