I would love to explain my condition and how I cope with it in a way that makes sense to the everyday person, but unfortunately my condition denies me that. Not only me, but denies neurologists an explanation as well. It is really hard to get your head round having a condition that is so ‘unknown’ in the medical world, let alone the world outside of that. I eagerly await on new research to have a better understanding of my illness, to have better medication, to have better consistent coping mechanisms and to have answers…maybe even a cure?
In all honesty I really struggle with the uncertainty that surrounds my condition. The uncertainty is literally captured In my diagnosis. Idiopathic Hypersomnia – idiopathic meaning unexplained/unknown.
I was wrong to believe my journey would be simple, and I was wrong to believe that I would be handed a step by step guide to help me through it. Idiopathic hypersomnia is so individual, varying from person to person, it can feel quite isolating at times.
My condition is not new, but I have ‘new’ challenges most days. I would even argue that I don’t have a normal. I am in a continuous state of ‘let me try this’ or ‘maybe this will work’. The one thing I do know is that my condition is progressive. So what worked for me last year, last month, or last week might not work today, tomorrow or ever again – not to be dramatic, but its true.
I feel like I am playing a game of snakes and ladders.