Today, when I got up, there were two things I was looking forward to. Having lunch with two of my friends from my old school (who I’ve been missing a lot), and going to a doctor’s appointment to get a series of test results. Usually, when I go to the doctor for test results, I hope that everything is fine. It isn’t that this time I was wishing for some kind of illness, but after two years of not sleeping, I did not want to be told that everything was fine. After two years of not sleeping, I can definitely tell you that everything isn’t fine.
Not sleeping is terrible. So terrible that I have avoided writing about it because I don’t even want to look at it. I don’t want to give anymore power to this nightmare that overshadows every day of my life. It isn’t that I’ve completely tried to ignore my insomnia, I have done every sleeping remedy, from melatonin to zopiclone, I have been to see every kind of medical practitioner from my MD to a hypnotherapist and overall I have seen very few gains.
For a little while, vitamin D seemed to be my saviour. I was sleeping better, had more energy and generally felt clearer; but it didn’t last. Again, when I first started taking zopiclone (after 7 days of not sleeping which is a bizarre kind of torture that I would never even wish on Donald Trump), outside of the drug hangover the next day, I was sleeping. At least for the first few weeks. Life is still better with vitamin D and zopiclone, than it is without. But better is not good.
Most nights I can fall asleep in under an hour, but the problem is that I cannot stay asleep. An average night for me involves being up 3-4 times, each time for between twenty minutes to three hours. I have meditations and visualizations that I listen to in order to go back to sleep, but I never feel rested.
Then there are the nights when I don’t sleep at all. Those are the hardest. Not only is a sleepless night unbelievably long (there is definitely some kind of space-time curvature that happens to lengthen those hours), the next day is painfully long too. I spend all day yearning, feeling hollow and shaky desperate to go to bed, but not knowing whether that will actually lead to sleep.
The less sleep I have, the less functional I become. My long term memory is sluggish and my short term memory is fogged. It’s hard to do anything well and some things, like driving, I’ve had to stop doing altogether after sleepless nights (ever since the time where I couldn’t remember which pedal was the break and which was the accelerator while I was driving).
People often tell me that they don’t know how I am managing it. The truth is that I’m not. I’m not managing anything. I’m treading water in the dark wondering if the waves will take me, or if there will be some kind of lifeboat. I keep going, day after day because I don’t see any alternative. What’s my other option? If there was some way to opt out of continuous sleep deprivation, I would do it in a heartbeat. If you told me I had to learn to stand on my head and play the piano with my feet in order to get a full night’s sleep, I would do it.
But, no one is offering me a way out.
I’ve been told that insomnia is tricky, that there are many possible contributing factors, that it might just all be in my head. Until today, all of the tests I’ve had have come back more or less in the ‘normal range’ (except for my immune system, which has gone on strike until I start to sleep again.) No matter how much I have pleaded to the medical world that I am slowly disintegrating, they have responded with shrugs and benign smiles.
Today, I finally, had test results that were not in the normal range. Finally, I have the science to back up what I said was there all along. I’m not elated or even victorious, but I am definitely relieved. For two years, I’ve been saying that there’s something in my body that’s broken and two years is a long time to be quietly ignored.
I feel a pent up well of anger from all the times I’ve not been heard. I want to stand on my rooftop and scream, “I’m not fucking crazy! I know when there’s something wrong with my body!” Except that the only answer I would get would be the barking of the neighbourhood dogs.
The truth is that the one I want to hear me, is me. I had gotten to the point where I doubted myself, where I wondered if I was just crazy. I doubted my own experience of living inside my body because some old entitled white men didn’t hear me when I said there was a problem.
So, I’m putting this in a blog here, because I know that I am not the only person who feels shamed, belittled and unheard in our medical system. I am putting this in writing here because I hope that it will help someone else believe in themselves and the experience of living in their own body.
I want to be here to hear you. You know your body and you’re not crazy if you feel a change and want to know why. If you feel like there’s something wrong, it’s because there IS something wrong. Find the people who support you and keep pushing. You are important and deserve to have answers to your questions and validation for your feelings.
Not that answers make everything better. There is still the what now aftermath of the answers. For me, it seems my body has pretty much stopped making hormones. My estrogen, progesterone, testosterone, DHEA and dopamine are all under normal levels and pretty much every other hormone is at the low end of normal (except one stress hormone that’s super high).
What I still don’t know, is the why, but at least I have something to work with, a path to move forward that might eventually lead me out of the darkness.
(PS if you're interested in other test results, check out https://www.kylamcdonald.com/short-stories and you can see how I did in round 1 of the NYC Midnight Flash Fiction Challenge.)