Insomnia is defined as “habitual sleeplessness; inability to sleep” but the effects are much more dramatic and far reaching than missing out on a little shut eye.
Those of you who follow me on twitter, or are friends with me on facebook, will most likely be well aware that I suffer from insomnia.
Suffer is a word I don’t like, I object when people use it in the context of life with HIV. I don’t suffer from HIV. Actually, thanks to modern medicine, I don’t really often think about my HIV that often (believe it or not) and I definitely don’t suffer from it. But suffer seems the right word when it comes to my insomnia.
I’m writing this at 03:27 with my *cough* glass of wine. It’s the only way I can get through the boredom. Writing, wine and syndicated American television are my crack. I’m not happy.
Yes, the main side-effect of insomnia is a lack of sleep but that’s just the start of it. My days are blurring into each other. I nap now and then, when I feel it approaching me but that could be at 07:00, or it could be at 15:00 – is it Sunday? Or Friday? Then when I am “awake” I’m only awake in the strictest bio-medical definition – my legs are moving, my mouth is talking my brain is just a mess of white noise and static.
My sleep pattern is non-existant, my waking hours are a fuzzy mess and I look like an extra from ’28 Days Later’ – but that’s not the worst of it.
This insomnia. This crippling blur is now impacting on my relationship. I have the most patient, loving and compassionate fiancé a boy could ask for – I’m a very lucky person. He gets up at 05:00 for work, gets home at about 19:00 and is in bed by 23:00. That’s normal I hear you say, people gotta work, right?
I can’t go to bed with my fiancé. I can’t follow him to bed and cuddle him. I can’t watch him sleep and then drift off myself. I can’t do this because my insomnia means I can’t sleep, I lay there fidgeting, restless until I end up playing with my phone and then that wakes him up. My insomnia is ruining my sleep but I can’t let it ruin his too.
It was suggested to me that I exercise some sleep hygiene (basically remove anything that’s likely to keep you awake), phones were banished from the bedroom, the TV was taken out, curtains and windows closed. No change, no sleep. I’ve tried everything, meditation, medication, herbal teas and hypnotherapy tapes. It doesn’t work.
This insomnia, a term that people throw around all too easily, is ruining me. It’s destroying my quality of life. My days and nights are one long blur and I can no longer share a bed with the man I love and plan to marry.
My doctors shrug it off and say “we’ll keep an eye on it” and meanwhile all I’m left to do is pour another glass of wine and cue up another episode of Bones.
I’m at my wits end. I want my life back.
Tom Hayes (@PositiveLad on twitter)