First law of thermodynamics: energy cannot be created or destroyed, only converted. Which in me seems to translate to “your body needs all your energy just to semi-function; there is none left for anything else”.
It’s rough right now. I’m very tired, all the time. I’ve been keeping a written record of my symptoms and the “rescue” medication I’ve had to take so I have something concrete to show my endocrinologist when I see her in October, and it doesn’t look too good. The amount of cortisol I have to take in order to avoid the symptoms I associate with a crash that could lead to a crisis is quite high, and even on that amount, I’m still very unwell. I have a permanent headache. I’m exhausted just existing, and doing energetic things like getting dressed or making my bed makes me dizzy and gives me heart palpitations, despite my last heart tests coming back clear. Sitting up for more than a few hours makes my headache much worse; lying down helps, but doesn’t make it go away completely.
Energy is a problem. I don’t get hungry, but I definitely notice a worsening in my symptoms if I’m not careful about eating – and it basically scuppers the diet plan that the obesity clinic put me on. If I try to stick to the meal replacement bars, I am stuck in bed and teetering near an adrenal crisis. It’s not workable. I have an appointment with them in October too, but I’m nervous about it. I’m worried they’re going to think I’m just trying to make excuses.
Energy is such a tricky thing to explain. How does it take energy to sit at my computer and play the Sims? I don’t know, but after a couple of hours I have to lie down. How does it take energy to sit in bed and play D&D? I’m not even leaving the house. But it’s exhausting. Everything is exhausting. I’m saying that a lot but I don’t think I can overstate just how tired I am.
I can’t even exercise. My doctor doesn’t want me using my pedals. He wants me to flex my muscles, that’s it. That’s how concerned everyone is right now. My muscles are so broken that it hurts to have the cat sitting on me. Not because he makes biscuits and his claws prick me; just the weight of him hurts. Moderate touch hurts.
And all the “conventional wisdom” is that I need to lose weight, I need to diet, I need to exercise. It’s so hard being unusual, because what am I supposed to do?
I’m supposed to conserve my energy. I’m supposed to give my body everything I can to try to manage what’s going on. But all of it is contradicting and it takes so much energy just to exist like this and I can’t make more energy, guys.
The Medical Snowflake Diaries 