I know I am not alone with this so - sometimes when sleepiness is really bad, my brain fog hits like a ton of bricks. But sometimes the sleepiness doesn't need to be size of a mountain to cause intense issues, like trouble with talking, remembering the simplest answers, or understanding questions.
That is where "always carry notes with you" comes into the picture.
Before medication I had note that stated my name, address, phone number, my partner as my contact, and the topics I needed to talk about (or any relevant information). I wrote all that when my brain was not fried, so I'd have a safe way to communicate when it was fried.
I still bring notes to doctors and any meetings I have - even if I might feel like I am having a better day. I never know when that tide turns and sinks me into inability talk coherently, or causes me to have trouble to understand people.
I do this, even if I have a support person with me - just in case.
As they say "It is better to have it and not needed, than not have it and need it."
That is how I view all of the acommondations I use and need in daily life.
I don't feel shame for using them, and I rejoice when I am met with kindness (even when I can't get people to wear masks around me, while I am also immunocompromised, but that is a whole another can of worms) and understanding.
And before I go, I want to finish with a kind reminder to those who love someone with IH: Write things down for them, and with them. Dictate things, as they write things down if they can hold a pen. Writing supports memory, and many of struggle with it. Instead of adding to the struggle, support us, write things down, and remember - it is FAR MORE ANNOYING TO US NOT TO REMEMBER THINGS, than you. It is scary, it gives anxiety to us, and it hurts when it hurts you. So be kind.
See you again in two weeks! Please sub, support in ko-fi, and stay safe!
Trying my hardest to cope with a rare neurological sleep disorder some people don't even believe exists and yet manages to ruin my life.
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