Before I got M.E. I’d always been a great sleeper. I’d read a book for 10 minutes, settle down, let my thoughts drift away……..and wake up 7 hours later, 9 on a weekend. Nothing kept me awake – the more stressed or miserable I was, the more I slept. It was my coping mechanism and I liked it!
The first symptom I had that something was wrong with my body was insomnia. I’d drop off as normal, but wake at around 1am and be totally unable to get back to sleep. I’d finally settle into a fitful doze at around 4am only to be woken by the alarm at 6.30am telling me to get up for work. Six months of that and I was like a zombie.
As my M.E. progressed my insomnia worsened. When I contracted meningitis in 1996 and my M.E. became very severe all hell broke loose. I had the worst case of insomnia I’ve ever read or heard about. I once went 3 entire weeks without sleep, which is supposed to be impossible but isn’t! Most nights I’d manage about 4 hours, in 1 hour blocks. I wouldn’t have cared if I’d managed to sleep during the day instead but that didn’t happen either.
I tried everything:
- warm baths
- essential oils
- herbal teas
- milky drinks
- foods which contain tryptophan
- relaxation tapes and techniques
- Melatonin………..and when things got much worse out came the big guns:
- antidepressants of every variety
- opiate painkillers
- hypnotics, eg. Welldorm, Zimovane, Zopiclone
- benzodiazepenes, eg. valium, temazepam, nitrazepam
- …..and often a combination of all of the above.
One by one I became allergic to every single drug and could no longer take anything. You have no idea my anguish…….no idea.
We rejuvenate in our sleep and because I wasn’t getting any my body simply crumbled. My skin became dry and cracked, peeling off like it does when you get sunburn. I completely lost my mental faculties and my speech. My emotions were all over the place. I was so dizzy I couldn’t move without the room spinning. For 4 months I couldn’t even open my eyelids. My hair fell out, obviously. My muscles twitched and jerked literally inches off the bed. I felt so nauseous I could barely even drink water, let alone eat. My weight plummeted to under 6 stones (80lbs).
No-one knew what to do with me – I’m sure doctors didn’t believe how bad my insomnia was. I remember a locum doctor coming to the house when I was really really ill and telling me “if you were tired, you’d sleep”. If I’d had a knife I swear I’d’ve stabbed him through the heart. I also had doctors tell me “stop worrying, you can’t die from not sleeping” which isn’t even true. You absolutely can die from not sleeping – there’s a disease called Fatal Familial Insomnia where you just stop sleeping one day and within 3 years you’re dead. I read about it and I’d actually developed many of the symptoms. In desperation I contacted a sleep clinic to see if they would test me overnight to see what was going on but was told they only dealt with sleep apnea. No-one really gave a crap.
I discovered, through my insomnia, that our brains absolutely have to dream. So I’d dream while still being awake. I’d lie there with my eyes closed and have the most amazing dreams, all the while being semi-conscious and able to hear the normal world around me (cars in the street, my clock ticking, someone moving around in the kitchen). Bizarre doesn’t even cover it.
Of everything I’ve suffered in the past 22 years, nothing comes close to not being able to sleep. It was the thing which brought me closest to suicide on dozens of occasions. I’ve taken overdoses of potent drugs and didn’t give a damn if I died – I just wanted to sleep. It didn’t work. There were many ‘overdose’ nights, but one I remember clearly was taking antidepressants (maximum dose), plus 2 opiate painkillers plus 10 (yes, you read that right) sleeping tablets……..and I still didn’t sleep a wink. I’m amazed my liver didn’t pack up though
I suffered the tortures of insomnia hell for 15 years and then slowly, slowly my sleep began to improve. I thought that if my sleep ever improved then my ME would also improve, but it actually turned out the other way round. My M.E. gradually improved and eventually my sleep started to improve too.
Going on a low histamine diet helped enormously and I’m now back to sleeping more or less normally. I can drop off to sleep within about 15 minutes, though still need the distraction of listening to a talking book, and usually sleep for between 6-7 hours. I sometimes still wake around 1 or 2am for a wee, though after going low histamine that only happens now and again rather than every single night like it used to.
My gratitude at finally being able to sleep is overwhelming. When you’re ill and in pain you need a break from the suffering and sleep offers you respite. Ironically once my ME, and my sleep, had started to improve I finally got admitted to a sleep clinic for an overnight study which showed that my sleep, indeed, was rubbish………..but that was when my sleep was the best it had been in over a decade! I soooo wish they’d tested me when I was at my worst and I could have proved how bad my sleep really was. They still couldn’t tell me why was sleep was rubbish and just said “it’s common in people with ME and chronic pain disorders” – what a fucking waste of time that was!
To any of my readers suffering insomnia hell you have my deepest empathy. Sleep deprivation is actually used as a form of torture when soldiers are captured and now I know why – it strips you of every emotional reserve you’ve ever had until you’d sell your own Granny down the river just for 30 minutes of shut eye. But it can get better. I thought I’d never sleep again but here I am, typing this after sleeping for 7 wonderful, unconscious hours last night 🙂 Hang in there.