LIVING WITH IDIOPATHIC HYPERSOMNIA
I am a Veterinarian
I am a dancer
I am a seamstress
I am a hypersomniac
I am a strong, intelligent woman.
I am successful in my career.
I have a loving partner.
I have a beautiful home in the city I love.
I have a very cute cat that I relate to on a deep level (we have synchronised nap schedules).
Living with idiopathic hypersomnia (IH) is not straight forward. To be honest I have sat down to write this account so many times, only to be overcome with exhaustion and have to lay down. It seeps into every aspect of your life, personal, professional, and everything in between. IH affects us differently. Unlike some others I can wake up to an alarm, I'm quite militant about getting out of bed immediately, I think this stems from a deeply ingrained desire to not impose on others. However, if I don't have a reason for getting out of bed it is a completely different story. Luckily, my cat needs breakfast everyday, and boy does he insist on routine.
On a typical day I need to sleep about 15-16 hours. Try fitting that into 24 hours with an 11 hour shift at work, 1 hour of commuting, and needing to eat. And this is when I'm on my medication. I have mastered the art of napping on the floor in my consulting room, in fact I now have a complete swag style setup hidden in the cupboards I fold out on my breaks. Some days I choose to sleep instead of eating, or plan my day so I can eat meals quickly between consults and maximise nap time/break times.
My first draft of this account included a 1000 word exposition about the way the medical system failed me. It boils down to idiopathic hypersomnia is a poorly understood, rare illness; and women are often dismissed by medicine. A brief list of things I was told by doctors:
● It's all in your head
● you have low iron (in spite of normal iron levels on blood tests)
● you have given yourself jetlag by sleeping during the day, you just need to retrain you sleep routine
● you are clinically obese and therefore must definitely have sleep apnoea, there is no other explanation
My road to diagnosis was long, heartbreaking and disenfranchising. But once I got to the end, things really started to make sense. Having a name to put to the way I feel is comforting, I know I am not alone in this, but I also know that I could live my entire life and never meet another hypersomniac in person. I am learning to love my body and my brain for what they are and what they are capable of; I am forgiving myself more easily, and I am more gentle on myself (most of the time).
My family, friends, colleagues and bosses do their best to understand what I need, but I feel like a constant burden to those around me. I feel like I’m walking through quicksand, my brain gets cloudy and I cannot focus on anything. Some days are great, some days I can't form complete sentences. I am slowly learning that brain fog doesn't happen to everyone, my tiredness is different from other people's tiredness. And I am developing little descriptions of my experience to help explain to other people.
Like static on old analogue TV's; black and white, fuzzy, constantly moving, never forming into a decipherable image, and with this horrible humming buzz that doesn't let up.
Like my body is made of mud, my brain is trying to tell my muscles to contract but they are unable to lift the weight. gravity becomes an irresistible force, my body starts to collapse on itself, leaning on any surface, vertical or horizontal until I finally settle in my default complete horizontal position. This doesn't necessarily happen all at once, I don't often fall in a puddle on the floor; it will happen gradually, I slowly rely on more and more support until I can find a place to lay down.