It seems I have to make an apology to the funky pink liquid that is Low Dose Naltrexone. My assumptions last week that improvements caused by LDN had plateaued out were unfounded and I should be more grateful to the medicine than I have been. You see, during week four the numbers printed on the side of the oral syringe had almost all rubbed off. So I had spent that week estimating what a 1.5ml dose looks like. And so as not to tempt fate and take too high-a-dose and risk side effects, it seems I had been erring on the side of caution and not actually taking my full dose for most of that week.
It took till the end of that week for me to have an opportunity to go into town to buy a replacement syringe (I’m predominantly housebound and often bedridden so a brief trip into town is a complicated and expensive affair that involves four days rest prior, door-to-door taxis, sunglasses, lightweight pain-free clothing, and a strict time limit of just minutes before my energy levels plummet and I end up having a seizure or a four day crash). Only once I’d brought home a new syringe and taken that evening’s dose could I see how way off what I had thought 1.5ml looked like, really was. I was probably taking 1.0ml or less during that time, so it’s no wonder my improvements levelled off.
But that’s all behind me now because I have been taking the 1.5ml dose each evening, round about 10pm, for a week now. And I have indeed had another noticeable improvement in stamina levels. I have again increased my walking distance a little bit, not every day, but two or three times a week, and actually enjoyed a walk outside in the sun. It may not have been for long but it was a joy to be surrounded by greenery and to laugh at a beautiful, almost white Labrador wallow into the deepest muddiest puddle you’ve ever seen in your life – much to the dismay of the people walking her who had only the day before bathed and groomed her, apparently. Funny how witnessing little snippets of life like that are so enriching; I appreciate them so much more after breaking out of what feels like solitary confinement for the best part of two years.
But there’s something else I have achieved this week which has brought a big chunk of meaning back into my life. Ever since developing ME I have been unable to wield a paintbrush, pencil or pen. Something goes wrong between the brain and the hand and it’s like both hands have become my left hand (I’m right-handed) – I cannot coordinate the brush, I don’t know what’s supposed to happen, my hand shakes or drops the brush, and my brain doesn’t know what shapes to make with it. For someone who has been a practising artist for twenty years, to lose my creativity not just at a technical and draughtsmanship level, but also at an intellectual and processing level has been mortifying. It’s felt like having a piece of my brain cut out. I have mourned for my creativity in much the same way I grieved for my career.
This week though, I painted. And I painted and I painted!
I’m working on portraits in watercolours, rather than the more calligraphic roses and castles folk art work I had been receiving commissions for up until I developed ME. I’ve chosen portraits because I use to be good at them and I want to ease my eye and my hand back in to art without setting myself up to fail with something that requires single-stroke accuracy with a brush and enamels. And so far so good – my draughtsmanship isn’t as good as it was, I’ve overworked the painting in places, it’s unresolved in others, and the features are a bit skewiff, but I’m producing work that surprises me because it’s not completely awful – perhaps at a level similar to when I was in my late teens. Yes, that means I’ve regressed 25 years or so in terms of skill level, but it’s a darn site better than being cognitively and physically disabled from so much as even mark-making in any coherent way. That disabling has reduced me to tears several times in my ME-ish past, to the point that I resolved never to paint or draw again – it’s too upsetting to see my primary skill obliterated. So not only has LDN improved my physical stamina, it’s doing something to repair the disjoint between creative thought and technical delivery. Welcome back, small piece of my brain! I thought you were lost forever.
I’m considering using that first tentative attempt at painting as my blog photo for this post, but I’m uncertain whether putting it out there will make me feel exposed; permanently sealing the reminder that I’m a teenager with a paintbrush again. I intended to capture a little something in the painting (it’s a self-portrait) of what I felt like that day: vulnerable, wrenched by my ME as always, and a little wary, but also cautiously hopeful. So if there’s no image accompanying this post, you know I chickened out.
So my positive thought for today’s blog post is this: whether I’m enjoying watching a happy pooch get mucky muddy paws, or I’m enjoying getting mucky painty paws myself, these little incremental improvements are having a far greater emotional impact than I ever expected, more so even than their physical impact on my life. I’m going to make a point of doing more people-watching and wildlife-watching at the times I’m well enough to go outside. Just being silent and observing, contemplating those little vignettes of life that bring joy and humour and a sense of belonging and connectivity with others. And although today I am very tired, having had only 1 hour of sleep last night (no reason, just one of those delightful ME nights), and my tiredness has left me unable to coordinate a brush or pen for today, (let alone my legs to do any walking), I’m going to make a point of silently observing myself when I’m next well enough to paint again. I’m going to contemplate the preciousness of those creative moments I thought I’d lost but are still lurking in there somewhere. They just need some compassionate coaxing. And time. I think it’s good to step outside of ourselves and look in with a sense of peaceful contemplation, even on days we cannot physically step outside.