When I was 10, I was taken to see a doctor who prodded and poked at my face and finally, after much mulling, announced I had something called “Kosten’s Syndrome”. Being a child, I wasn’t given any further information, but told to put a hot water bottle on my face and lump it.
And that’s what I’ve been doing for twenty six years.
These days, Kosten’s Syndrome is called TMJ. This is actually a bit unhelpful – TMJ stands for temporomandibular joint, and everyone’s got one. The word TMJ is missing is “disorder”. My jaw: it no quite work proper.
I also, alas, am the third known generation of my family to have a sleeping disorder. This can lead to a bit of a trap whereby fatigue = pain = fatigue = pain etc., but generally speaking I pace well and have what I can only really describe as an excellent and fulfilled life full of good things in reasonable quantity. I am extraordinarily privileged in being able to do this, and even though my face hurts, it could be so, so much worse.
However I have no memory of not being in pain.
This is not a big, dramatic thing, I hasten to add. My jaw hurts at a reliable 3/10 every hour of every day – a bit of post-exercise soreness, only in your face, and without any “I did lunges” smugness. Once every ten days or so, or if I’m especially tired, that pain goes to a 8/10, becoming a throbbing, sloshing headache that reduces my cognition to an agonising crawl. Paracetamol barely takes the edge off under those circumstances, but I am so grateful to have the kind of job(s) where if I do have a bad day, odds are I can take it gentle. Less so, admittedly, if I have a gig, but generally speaking I’m tired after gigs, not beforehand, and thus the pain is often triggered in the days following a run of shifts rather than during.
In other words: I have a wonderfully fulfilling live, but there is a price paid for joyful activity, and that price is pain.
I’ve been on board with paying that price my whole life – I don’t remember any other way of being. But like many people over lockdown, I did a bit of thinking, and prompted by my friends (always easier to advocate for loved ones than ourselves, sigh), when things eased up I went to my GP for advice.
The first GP I spoke to, over the phone, was incredibly sympathetic. She focused on the sleep more than the pain – which was fair, as I figured breaking the fatigue=pain cycle would do nothing but good, and sent me to the sleep clinic.
It is an extraordinary privilege to have access to a sleep clinic at all, but this was to prove a rocky road. In my initial assessment, again over the phone, I was diagnosed with NONE of the following: sleep apnea, restless leg syndrome, night terrors. I could have told the nice consultant I spoke with that this was the case, but it was important to check off the obvious physical things before inevitably, she prescribed me a course of CBT-I – Cognitive Behavioural Therapy for Insomnia.
Now. You don’t go 26 years being in pain and not sleeping without doing a wee bit of digging, and I had already read several books on CBT-I and indeed made several attempts at its core protocol, towit: sleep compression. This is where you essentially exhaust your body to a state that it has to use its time in bed efficiently. So for example, if I wanted to sleep a solid 8 hours, I had to go to bed not a moment before 11 a.m., and set my alarm for 7 a.m. on the dot. No naps, no lie-ins, no nothing. The idea being that the fatigue I would experience would force my body into essentially a hard reset, into using the time in bed efficiently, and thus help overcome my insomnia.
The problem was, I’d tried this before, and it nearly killed me.
I did try to warn the councillor of this, but because “my family has a sleep disorder” isn’t in the textbook, I was told I had to complete sleep compression to “pass” the course. At the end of two weeks of trying, I was non-verbal. I couldn’t read. Couldn’t write. Couldn’t even watch TV, it hurt so much. Fatigue = pain = fatigue. The only thing I could do was colouring in books, rocking gently surrounded by soggy tissues. Even going outside became too much – I was in a state of constant sensory overload, to the point where one day my partner had to half-carry me down a (perpetually broken) escalator, because the slits in the staircase were so enormous in my eyes that I couldn’t physically move.
In my normal life, I run for pleasure and write for joy.
Reader: this was torture.
I don’t blame the sleep clinic for putting me through it, per se. The evidence for sleep compression is very good. That doesn’t mean I’m ok with what happened, because fundamentally, my voice was not heard until after it was broken.
After two weeks, the councillor let me stop. I still sat in on the rest of the CBT-I course, which was conducted over zoom. There was basically nothing I didn’t know and hadn’t practiced for years. This isn’t because it’s bad – the reason I practice it is because CBT is very good. It is incredibly helpful to not catastrophise bad nights or bad days. It is feels lovely to be grateful for the things I have, to have structure and recognise spiralling thought patterns. All fantastic stuff. So fantastic, I’d been doing it for ten years already.
There is nothing quite as anxiety-inducing as being told that this will help your anxiety and therefore your sleep when you aren’t anxious. Nothing quite as depressing as being told that these techniques will help beat your pain-related depression when you aren’t depressed. You’re just physiologically a bit unlucky. Your jaw no work right. Your DNA did not encode for normal sleep architecture. Both these things aren’t great news – but you’re not depressed. Which ironically makes being in a group therapy course focused on sleep-related anxiety and depression a real test of those tools of CBT upon which your mental wellbeing already depends.
At the end of the course, I was sent back to my GP. This time, I got less lucky.
“I don’t see what the problem is!” declared the brisk, older gentleman GP down the phone. “Lots of people are tired. Fatigue is subjective, you know.”
You read all the stories, of course, about women’s concerns being dismissed as “hysterical”. With women being prescribed treatments for their “anxiety” rather than having their concerns listened to.
Ticked that one off the bingo-card of life, then. Let’s try again…
I requested a face-to-face appointment with a female GP.
In the interim, however, I was, somewhat grumpily, prescribed 10mg of amitriptyline. This is one of those drugs that you sort of throw at the problem in the hope it sticks, and it can have mixed results. At 10mg it’s used for chronic pain; at 50mg it’s an anti-depressant. Because the prescription process had been so slap-dash I was quite uncomfortable with using it, but after a few weeks I experienced two truly astonishing things. Firstly, the three-times-a-week significant, pounding headaches that had been the story of my life up to that time, dropped down to merely once-a-tenday. And secondly, I slept better.
There was a bit more crying at this juncture, albeit of a different kind. On the third night when I got to 8 p.m. still able to speak, still able to hold a meaningful conversation without hurting, just hurting from my jaw through my skull, I cried. I cried for the extraordinary experience I was having, and for all the many, many years of not having had this experience at all.
Goodness self-advocacy can be emotional.
The female GP I eventually saw was brilliant, quietly and calmly working through the problem. Her first port of call was to send me to the maxilliofacial clinic to have my jaw examined, as 26 years later it seemed worth checking up on things.
A brisk surgeon prodded my jaw, examined my mouth, and exclaimed: “Yes, this is obvious, you have internal derangement, there’s no cure!”
I don’t think I expected a cure, to be honest. Sure, you hold out a tiny slither of hope… but it was always pretty tiny. And at least knowing – knowing as an adult, not a child – I was able to go back to my GP and ask for a management plan. Alas, by this time, my favourite GP was on maternity leave and a young woman who by her own confession had been on the job for two weeks was a little overwhelmed.
“A management plan? Um… let me see if there’s someone I can refer you to for that… I mean, I think you’re going to be in pain for the rest of your life, but um… uh….”
I nearly laughed, to be honest. Bless her socks.
As an only child, I’m sometimes asked “don’t you miss having brothers or sisters?” and of course the answer is: you can’t miss what you don’t know.
In that sense I don’t really miss not hurting. It would be an absurd thing to have a relationship with. But I do wonder, sometimes. I look at my calendar – full of wonderful things – and am also aware that it is a very carefully structured thing, carefully engineered to balance expenditures of energy, and for that to be ok. It’s not that I can’t do more than one thing a day – it’s just that there’ll be a price to be paid later, and while I’m fine with paying a cost in being knackered – that’s just real life – what that fatigue will also be, is physically painful. It’s taken me literal decades to realise that isn’t the norm for everyone.
I am proud of how I live, given everything. This year on December 1st I sat down with my notes and realised I’d run more in the last 11 months than I had in all of 2021, despite two months resting a calf injury. I really enjoy doing events, lighting gigs; love seeing friends. I am incredibly happy and grateful for my life, and proud (most of the time) of how I live it.
And sometimes I am also ashamed. Ashamed every time a friend says “are you free on Wednesday?” and technically I am. I am free. But I also have something scheduled for four hours later, or two hours beforehand, and I know that if I do both, on Thursday I’ll hurt. And so I say no. I say no to people I love. I delay going to fix my Mum’s printer, because I’d have to do that and then something else on the same day, and it’ll hurt. I love doing escrima, but it always happens in the evening and if I’ve done something in the day before, or if I did a gig yesterday, by 7 p.m. the odds are quite good that I’ll be hurting. And I don’t know how to explain it. The things that affect my life are a) obscure and b) really pretty minor in the grand scheme of things. My lived experience – and the life I present to the world – is a fulfilled and good one. I don’t know how to say to people I love, “It’d be fantastic to see you, but I hurt.”
And so, in a tiny, ickle way, I am also ashamed. But – in the great mess of dodgy sleep architecture and a currently incurable malfunction in my jaw – not being ashamed is one of the things I can work on.