This is the diary of someone with severe ME. For those unfamiliar ME stands for Myalgic Emcephalomyelitis it is a neuroimmunological disease affecting over 30 million people worldwide. Severe ME refers to patients with ME who are housebound and mostly bedbound. I am completely bedbound and depend on IV fluids.
The defining symptom of ME is PENE or post exertional neuroimmune exhaustion. PENE happens whenever someone with ME "overexerts." The more PENE you experience the worse you get. The last thing I did to trigger PENE was eat some bread with my mum. In other words, if you dare to live, the disease progresses.
To prevent the progression of my disease I spend every day in a dark room resting. I recieve IV fluids through a central line in my chest and take a carefully crafted set of over 20 medications and supplements. I can watch videos, but nothing too exciting. I can talk, but not get emotional. Every action must be accounted for in my balance sheet. Every piece of ATP accounted for.
Then of course the pain. The daily constant migraines. The light, noise, and skin hypersensitivity. The acid burning muscles. The aching joints. The spasms. The stabbing neuropathy. These too take energy to endure. Energy I can't afford.
This is my existance of living death. The girl who once inhabited this body, a girl you will get to know perhaps, is no more. She died a slow painful death. Now I write to you from the living death of severe ME. Not to teach or to shed light or whatever other BS. No. I do my advocacy elsewhere. Simply because even ghosts it seems want to be heard. Because this existance makes you want to shout and curse into the void and you dear reader, if you even exist, you are my void.