It was ticking into 3am and still, no sleep.
I check my health tracker for the millionth time and my heart thuds on at a steady 100 bpm. And thud like hell, it does, every beat feeling like an escape attempt. With a wince, I try to turn over; the entire left side of my back is knotted tight as a plank. The left shoulder, well I know it’s still attached properly, but somewhere between my neck and upper arm, it feels wrenched out, both tight and disjointed at the same and the pain of it pulses up my neck, lances down my spine.
My ear plugs muffle the white noise of the city (and my neighbor who apparently is superhuman and needs no sleep at all). In the dark and still of my apartment it’s near impossible to ignore the pain. Breathing exercises didn’t work, none of the jedi mind tricks I learned over the past 20 years are helping and it looks like I won’t be escaping the pain in sleep, not tonight anyway.
I get up beeline for the box on top of my fridge and dig up a bottle of tylenol. There’s only one left in the bottle but it’s better than nothing. I down it and then sit at my desk to write in my journal until I can barely keep my eyes open. The clock reads 5 when I stumble back into bed, carefully arranging my back and limbs so I don’t fuck up the muscles and joints any worse than they already are.
I finally fall asleep with the dawn.
Anyone who knows me for any significant amount of time will be certain to hear one thing from me. Well, two things. If you ask me what I’ve been up to or what’s going on, at some point I’ll shrug (or the digital equivalent) and say “oh, just the usual chaos and mayhem”. Because why shouldn’t people have personal catch-phrases? But the phrase I mean is one that’s a little less light-hearted.
If I’m awake, I’m in pain.
It sounds dramatic, but to be honest, my entire medical history is dramatic and ridiculous. If I hadn’t lived through it, I wouldn’t believe that one person could make it 40 years through the sheer number and severity of disease and just physical ludicrousness that I have and still be alive, or even remotely sane. And I’ve actually had doctors say as much to me when I tell them my medical history.
I don’t feel remotely sane most of the time. I feel like one bad toe stub away from going completely fucking feral, to be honest. It’s the worst when I can’t sleep.
I don’t know how my experience of pain measures up to anybody else’s. I’m lucky (?) that most of the time it’s manageable, or at least not severe enough that I can still limp my way through the day with some grace. Not having a traditional job makes a huge difference; if it comes down to another pain killer over a hot pack and a few hours in bed, I’d pick the bed every time. In my school years, I popped over-the-counter pain killers like candy and was still in pain. Not getting the right medication in time left my hands a teeny bit deformed and put a dent in my professional artist dreams. Though, the right medication gave me shakes, so sometimes it sucks no matter what.
My typical day includes not raising my arms too high (years of sleeping on my side fucked up my shoulders, but sleeping in other positions causes breathing issues, so fuck my life apparently), making sure to lie down several times during the day (because my upper back riots if I’m upright for too long), dreading any kind of walking (because my feet have have been pain clusters connected to my ankles for as long as I can remember and no doctor has found a reason yet) and performing all sorts of witchcraft to open jars and bottles (because the arthritis in both my hands is a bitch). Bad days include the fallout from any of the above being inflamed more than normal – the joints or the tendons, or the muscles scrunched up even tighter for reasons that I often just can’t trace. Did I sleep in a funny position? Maybe. Is my lupus flaring up? Maybe. Is it weeks of overcompensating for some other ache catching up with me? Maybe. Did a butterfly flap it’s wings in Mexico? Fucking maybe, I don’t know.
For the sake of what little sanity I have left, I don’t try to chase down which of a billion stimuli might have set my body off. I don’t ask what I might have done wrong, or what funky thing I might have eaten (oh god, I didn’t even go into the volatile hellscape that is my stomach). Very rarely do I know the answer and trying to chase down the source of every ache and pain is just kicking my brain into a blender and setting it on Liquidfy.
Probably the worst bit is the total lack of information or support from my doctors about my pain. For example, my feet have been a near constant source of pain since I was a kid. Physically though, there’s nothing wrong with my feet to explain it; nothing that can show up on an MRI or x-ray. If it’s some posture issue or something else causing the pain, no doctor has ever mentioned it. Usually any pain gets chalked up to lupus-related arthritis; I had to fight for the testing to prove there was arthritic deterioration in my thumbs. And my doctor often points out that adding pain control to my current medical cocktail means trial and error- and potentially upsetting the balance I have now.
So I plod along, using whatever I can cobble together or afford to keep myself functional. So a tylenol and hot pack it is, and sometimes grinding my teeth at 3am because I can’t sleep and want to tear myself free of every last sensitive nerve ending. Orthotics in my sneakers help a lot (and keep me from wearing out my shoes so fast). I’ve been doing at least 20 minutes a day on a treadmill and that’s done leagues of good in increasing my functional endurance. I have a solid idea of what foods and what cooking methods are least likely to upset my stomach. Music, oddly, helps or at least absorbs enough of my attention away from the pain. If I have a bad night, I’ll try to catch up on sleep during the day, sleep schedule be damned. I need at least 7 hours for minimal pain levels, or at least an hours nap if something flares during the day. The only time I don’t feel pain is when asleep and sometimes in that hazy soft space that’s not quite sleeping, not quite waking.
There are a lot of days when my first thought is “Fuck, I’m awake again.”
I stretch whatever’s tight and frankenstein my pillows together to better support my shoulders when I sleep. I’ve been reading up on herbal properties, but, really there is no safe way to use them unless you’re a chemist with a lab and can observe, on a microscopic level, how a pinch of this, an ounce of that, will interact with your body in all it’s unknowable quirks. Still, I drink cinnamon tea and pretend it might lessen any inflammation in me. Mostly it just tastes good and probably my best medicine is letting myself have as many good things as I possibly can. Mostly, I strive to keep myself functioning well enough and long enough to enjoy all those good things as much as possible.
♥️
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