MY INSOMNIA STORY
It has recently occurred to me, that I have never shared my insomnia story here. I’m not convinced it is enormously entertaining, but I’m quite certain it has been enormously life-impacting for me. Given that I’m currently going through a sustained period of devastating grief, sleep is something I would dearly like to have more of.
Sleep and I have not been friends for a very long time
When I was a wee thing I may or may not have slept. I have no idea. I don’t remember. But I do remember getting up at 2am on Christmas Day when I was eight and being promptly sent back to bed by my very bleary-eyed parents. I feel like that was a common occurrence.
When I was in my twenties I did sleep a bit. It took me a very, very long time to fall asleep and then I would toss and turn all night long. But I am confident I did sleep a bit because surely I would remember if I didn’t.
When I had my babies, in my early thirties, I didn’t sleep a lot. But then who does? Being a young parent is, quite frankly, exhausting. Parenting little ones is a young person’s game. By the time I hit forty, my Restless Legs Syndrome (RLS) was pronounced and obvious and disturbed my sleep. A lot. Looking back I could see I had always had RLS. I was fidgety all the time. My tossing and turning at night was all about restlessness. But in my forties, it deteriorated to the point it was keeping me awake most of the night. So I sought medical help and was prescribed medications that helped. For a while.
But RLS and insomnia are not the same thing
I was cursed with both sleep disorders. Restless Legs Syndrome can be treated with medications, that work for some people and do not work for others. Some people with RLS still sleep fine (like my dad and my son). Whereas some people like me, find the RLS keeps them awake.
Insomnia is a lot more insidious and has a lot of different root causes. For me, it is much harder to treat. Because I have a history of generalised anxiety disorder, my personal insomnia is probably grounded in anxiety. But I do not know for sure. I had a sleep study done in 2018 that confirmed the diagnosis of RLS (even though it was well controlled and medicated at the time – I was still apparently restless all night). But that study also showed I have hyperarousal – my brain is active 24/7 and does not do the shut down kind of thing that most people need for rest.
Insomnia can present as difficulty falling asleep, difficulty staying asleep, or waking too early. I seem to have all three. Without any medications (and I confess it is a very long time since my sleep was completely unmedicated) but without them, it takes me hours to fall asleep. If at all. When I do fall asleep, I wake a short time later. Maybe 20 minutes. Maybe an hour. But there are no solid blocks. And of course I’m always awake early.
I don’t remember when the insomnia became just a case of someone not sleeping well, to being clinically significant. It was a slow decline – from not very good sleeper, to a person who can’t sleep virtually at all.
Things deteriorated twenty years ago
I remember being in my late thirties and my insomnia was pretty chronic by then. I was still working as a musician and would often have late night drives home after shows. My sleep pattern was to get home very late, then stay up for several hours to try and chill out, then go to bed in the wee hours of the morning and maybe get a bit of a sleep for a couple of hours, and then get up early to look after kids and go to work. I was living for sustained periods of time on less than four hours of broken sleep. I felt myself going mad and struggled not to just crash my car into a tree. A combination of undiagnosed Bipolar II Disorder mixed with chronic sleep deprivation. It wasn’t very good.
From there things pretty much deteriorated. If you speak to a health professional about insomnia they will absolutely start talking about sleep hygiene (which don’t get me wrong, is extremely important) and then they’ll say the word melatonin. If I had a penny for every time someone has mentioned melatonin to me I’d be a very rich woman now. With a very old currency. What people don’t understand is that it’s contraindicated in RLS – as are many medications, such as anti-histamines and particular classes of psych meds. All the first-line defence medications for insomnia drive someone with RLS up the fucking wall.
I had deteriorating insomnia for a decade
And then I hit a brick wall. In combination with a nervous breakdown and poor reactions to an antidepresssant I was on, my sleep deteriorated to being just twenty-minute blocks here and there. With multiple days in a row of me not even bothering to get into bed. I was having weekly psychology sessions and attending weekly Dialectical Behaviour Therapy to try and address my mental health issues, but I was in an out-of-control car and I was not the driver. There was a most spectacular crash and burn.
I ended up in the intensive care unit of a psychiatric hospital for eight days where the nurses could see that despite being given tranquilising doses of all sorts of things, I still did not sleep. All of a sudden my insomnia was taken seriously. My medications were reviewed. I was given a diagnosis of Bipolar II Disorder. And slowly over the course of nine weeks, I was put onto a medication regime that helped me sleep. By the time I left the hospital, we had whittled it down to the minimum working doses. I left that hospital with two mood-stabilising medications that both had the added bonus of causing slight sedation. My two RLS medications. And a dedicated sleeping pill.
I was sleeping seven hours a night
It was nothing more than an absolute miracle. That was four years ago. But one of the down sides to a sleeping pill is that they often cause tolerance and dependence. And as time has passed I have become both tolerant and dependent on the pill. I fall asleep like clockwork at 10pm every night. And then on a bad night I’m awake at 11:30pm. And on a good night I sleep until 3:30am. Any time I get a four-hour block of unbroken sleep, I feel a million dollars. Less than four hours is harder. More than four hours is so rare that I can’t really recall what happens. But it does sound lovely.
Once I’m awake I have taught myself to try and stay in bed for as long as I can, because I often will doze on and off until a civilised hour. Since my marriage ended a month ago, I’m sleeping in my own room and my sleep has vastly improved. As I am so easily wakened in bed, having no distractions or disturbances definitely improves my sleep. But none-the-less, nights are erratic.
I am currently grieving the two loves of my life. The only two loves I have ever had in my life and they both ended at the same time. I thought my sleep would get worse with this grief, but it has not. If anything, the sheer level of emotional exhaustion and the hours I spend crying every day seem to be having a positive impact on sleep. Last night I slept until 3:30am. That has happened several times in the past month. And then I stay in bed trying to doze for another four or five hours. All in all, for me, that is a lot of sleep.
Today I’m seeing a sleep specialist
My GP and my psychiatrist have both begged me to talk to a sleep specialist. One of the very good ones in Australia. So this afternoon I have an appointment. I have trialled so many different medications – at least a dozen – and had no joy. I actually have no hope whatsoever that the specialist can contribute anything more meaningful. But I will attend the appointment and see what happens. I feel like I am sleep disabled. There is just something biologically wrong with my sleep mechanisms and they are never going to work like other people. And like most things, insomnia deteriorates with age.
But I have learned four is the magic number. If I get four hours sleep I feel okay. If I don’t, I feel a bit rat shit. Most nights I get four hours, but not unbroken. Every now and then I get four unbroken hours. And every night I do continue to doze and get little blocks of 20-60 minutes along the way. Every single minute counts.
So that folks, is my insomnia story. When I hear people talking about getting seven or eight hours of unbroken sleep every night I want to slap them with a wet fish. I am so incredibly envious. Bed must feel like such a safe haven. I can only dream of such a thing. I hope one day I have dreams.
