What happens when a healthy person has an air purifier in their bedroom that begins to rock ever-so-slightly in the night? What about when they have a bit of a leak from their cpap? What about when the temperature in the bedroom goes up to 75 degrees? What about when the dog stretches and his nails graze the wall? What about when a line of sunlight creeps under the black-out blinds? What about when someone dares to take a step two floors below their bedroom? Probably nothing. Probably, they keep sleeping soundly. If they wake, they probably go back to sleep fairly quickly. It probably doesn’t even register.
What happens when a person with M.E. experiences these things?
What happens when a healthy person only gets 2 hours of broken sleep? They are very, very tired.
What happens when a person with M.E. experiences this?
Heart racing, difficulty breathing, muscle pain, extreme stiffness, dizziness, reemergence of migraine, very blurry vision, difficulty forming coherent sentences, loss of appetite, inability to get out of bed, panic. And that’s only in the beginning of the day.
Yesterday, my acupuncturist said, “This session should make you very relaxed and tired and you should sleep very well.” That prediction actually seemed to be true until 5am when the ghost in my room pulled and released the window blind and woke me up like a flash-bang detonated next to my head. I had been sound asleep, dreaming about Janis Joplin of all people. It’s one of those spring-loaded, black-out blinds and the sound of its uncontrolled retraction ricocheted off of every surface in the room and bounced around my cranium like a high-speed destructive bowling ball. After figuring out where I was and who I was and what had happened, I regained control of my fight-or-flight panting and was able to release my fingernails and toenails from their death-grip in the ceiling plaster. I lay down, trying to go back to sleep, but I knew that sun would come streaming in soon and I wake up from the glow of an alarm clock, so I had to make a move.
I stepped onto the chest below the window (climbing Mount Everest) and reached up in the dark to try to get a grip of the end of the blind, but it had wound itself too tightly to get my fingers behind an edge. Then I realised I was standing in my bedroom window naked and, if someone happened to be out there in the garden or my neighbour happened to have insomnia and was gazing out her window, they were getting an eye-full. I stepped down off the chest, put on my robe and climbed back up (Mount Everest again). After fiddling with the blind from every angle, I knew I wouldn’t make it budge without some sort of pliers to grip the end. I was also still shaking from the adrenaline and sweating from the exertion of standing up out of bed, climbing, reaching above my head… So, I gave up and went searching for my eye shades. Of course, they were in none of the usual places. I went into my meditation room and found my dusty back-up pair, knowing all these lights on and this rummaging was waking me up more and more. And worse: the dogs downstairs would think it was morning and, once they’re up, I’m screwed. That’s a combined total of 170lbs of hunger.
Back in bed, I lay trying to sleep for about an hour and, just when I was drifting off, the Rascally Robin started pecking at the window in our living room. I keep hoping it’ll stop and I keep forgetting to do something about it during the day, but EVERY MORNING AT AROUND 6AM this robin starts attacking his reflection in our window. I realise this wouldn’t wake up 90% of you ~ it’s a window on a different floor, for god’s sake ~ and I tried so hard to talk myself into believing it was just the soothing clickclack of a branch in the wind, but it didn’t work: I would start to drift off and it would wake me up every few minutes. Over and over. Torture. SO, I got up and closed my bedroom door. I know, this seems like an obvious remedy ~ something I should always be doing ~ but a closed door in our house is like a dog whistle. I could lie in bed all day with the door open and neither dog would have any interest in coming in, but, close that door and they are behind it scratching, whining and pacing back and forth, sure they are missing out on some awesome adventure.
Sure enough, as soon as I closed the door, got back in bed, put my eye shades on and settled down ~ just long enough for me to do all those things ~ there was a scratch on the door. And then a whine. I got up, let my dog in, let him on the bed, told him to shut up and then we both lay down and listened to the Rascally Robin pecking on the window downstairs. When it got a little louder, my dog started to get interested. He started doing that “aa-FUH” thing that dogs do ~ that half-bark puffing air through their lips. So, I started looking for the earplugs that my husband had gotten me ages ago. Up out of bed, rummage rummage, back in bed. The little packet only had one earplug in it. Not joking. Up out of bed, rummage rummage, got second packet, back in bed, insert earplugs. Now, picture this: cpap mask, medical tape over my mouth, my Zeo headband, earplugs and eye mask. Seriously?
The thing they don’t tell you about earplugs is, if you lie on your side in half-sleep and feel something burrowing into your ear, you wake up. Because that could be spiders or earwigs or ticks, oh my! The other thing they don’t tell you is, earplugs HURT. They make your ears ache. They make your head ache. Especially if you have the wee-est ears in the world, like I do. If I were watching, say, Led Zeppelin play a concert, I might not notice the ache. Or, at least, it would certainly be worth it. But, lying in the lightening room, feeling exhausted and traumatized, it began to feel like someone had filled my eardrums with ever-expanding putty. And, although I couldn’t hear the robin anymore, I was suddenly enveloped in my OWN noise. My bed was a sensory deprivation chamber. My gurgling stomach sounded as if it were amplified through a long pipe into my brain. My heart was like the drug smuggling airport scene in Midnight Express. The hum of the cpap and my metronomical breathing were like Dave in the spacesuit trying to change to manual controls, while Hal sings, “Daisy, Daaiseeeey…”
Just as I convinced myself this was soothing, womb-like and I could deal with the earplug pressure, my 105lb Rhodesian ridgeback jumped off the bed, went downstairs and rang the bell hanging on the front door ~ his signal to go out. And then he rang it again. And again. I knew, however, this was a call for breakfast. He didn’t need to go out. The cheeky bugger was trying to get me downstairs to feed him. I ripped the tape off my mouth and yelled, “GO TO BED!” It worked for about half an hour and then I heard my husband getting ready for work. I called it quits at 8:30am.
I did not embellish any of this and, although, I’m really trying to make it into a comedy, it devastated me. After all these weeks of horrible sleep, to be roused permanently from such a nice slumber after 5 hours, feels so unfair. When I came downstairs, my husband told me he was getting up at 6:30am tomorrow morning (a Sunday) because of the clocks going forward. I burst into tears.
I’ll try valerian for a week or two, but, if it doesn’t help, I’m moving on to brain chemical-altering, heavy-duty drugs. End of story. I thought I could will my sleep better, but this is beyond my abilities. I hope I haven’t caused permanent damage.