Insomnia
I’d say that insomnia was the worst symptom of MS, but honestly there are a good few that are wholly intolerable. Nerve pain is a special torment, a pain that is like acid rain running across your arm and leg and, somehow, right through your core. A pain that does not respond to painkillers, that you have no choice but to experience. A pain that most frequently wakes you at 3am. A pain so severe that you put a timer on your phone to predict how long the worst will last because when the worst is upon you, the pain is severe enough to make you panic. Nerve pain is, without doubt, the worst symptom I have experienced.
But losing the use of my hand for a while sucked pretty hard. My legs deflating me slowly to random floors is rough. Vision loss is pretty bad. I peed on the kitchen floor once.
Insomnia, though, is one of my nemeses.
Sometimes I’m on my way to be swept up in the sweet embrace of Morpheus when my leg kicks out spontaneously, or my shoulder moves with an immediacy and strength that I cannot replicate consciously. It is like being struck with a table while you’re lying in bed. It is hard to sleep while someone is throwing heavy objects at you.
Sometimes I’m drifting off when my intercostal muscles, the ones between your ribs, spontaneously contract in what people in the community folksily call ‘the MS hug’. It is less like the gentle embrace of a lover and more like the crowd is going wild because you’re about to be tombstoned by a WWE champion. It is hard to sleep when the Undertaker is waiting for you to tap out.
But sometimes it is the worst of all of these. Brain lesions were scary when I was first diagnosed but now I have so many that I ran out of names for them somewhere around Brian, and they’ve become pretty familiar. However, there is one place that brain lesions still scare me, and that is my brainstem. I have a lesion in my brainstem, on the pons, which sounds like a small island off the coast of Italy. It is not a small island off the coast of Italy. Demyelination here can interrupt the processes through which your brain triggers sleep. When this lesion is awake, I’m awake. The experience is like waiting for a bus that just doesn’t arrive. I’m in the right place, at the right time, the schedule says so. My bags are packed, I’m fed, I’m hydrated, I did my mindfulness, I accepted my anxiety, the room is dark and cool and… nothing happens. I lie there, waiting, and nothing happens.
I hate insomnia with the intensity of uncontrolled nuclear fission.
I have a plan, though, as I do for every major symptom. Like a religious preparation I have a sequence of actions I take to give me some control, and to make the situation just a little more manageable. I create plans through trial and error, testing each new step to see whether it improves the experience, even a little. In my efforts I’ll happily try anything if there’s even the slightest chance of it working. Prayer to the fates, lighting incense, performing musical theatre, rehearsing the lines of ‘ode to a nightingale’, hand standing while drinking a bottle of lucozade before dancing with a plush platypus. Ok I only tried that one once and it gave me a headache.
The insomnia plan begins with, well, insomnia, There are a few different basic rules that form foundations to the plan for what happens next. The first is that our aim is not to spend more time asleep, but rather to spend a greater proportion of the time spent in bed asleep. The second is that tiredness is our friend, not something to be frightened of, and sleeping less and getting more tired only means we’ll sleep better tomorrow. Finally, we trust our body, because our body will claim what it needs.
Insomnia strikes, and we enact the plan.
If you can’t sleep for 20-30 minutes get out of bed. I frequently give it a full hour before I finally relent and arise.
Snuggle down under a blanket in the lounge, listen to a podcast, wait to start falling asleep. This usually takes an hour, but leave it as long as it needs. Do not rush this step. I frequently rush this step.
Go back to bed, see if you fall asleep. Wait 20-30 minutes.
Repeat
Each turn of this plan is known as a ‘cycle’. For the past year I have been able to sleep well and on tricky nights I’ve only ever needed to use a single cycle to get to sleep. Last night it took 3. I finally got to sleep around 5am. This followed a similar experience two nights ago.
In moments like this I get scared. Aside from the fear that this could be a return to a time when the insomnia was bad enough to cause real problems, I get scared at the rustling leaves this represents. If you’re out in the forest of most people’s brains and the leaves rustle you chalk it up to the wind. Everyone has a tough night once in a while and that’s a totally normal if frustrating experience. But my brain isn’t most brains, and in this forest there are bears… and dragons. When the leaves rustle my first thought is that this might be a relapse, or given my immunosuppressed status an infection. I don’t think wind, I think dragon.
Anxiety, of course, exacerbates insomnia, and so we slip into a neat little vicious cycle, one of the many doom spirals that inevitably feature when you have an incurable neurodegenerative disease.
So here I lie, waiting. Is this a night when I’ll sleep soundly, or is this a night on the couch listening to the incomparable Shon Faye read her book? If things go wrong, will it need one cycle, where tomorrow will be difficult but manageable, or several, where tomorrow will feature a version of Cora who finds it hard to concentrate long enough to browse TikTok?
I lie down, close my eyes, listen to the sound of rain pattering through leaves outside.