This disease is fucked. I am tired of feeling angry at the world and tired of being terrified to wake up each morning.
How would you feel if your entire life vanished before your eyes and the only thing you could see in the future was a big scary void. The world that you used to participate in is still happily spinning around while for you all it now consists of is 4 very familiar walls day in and day out. Being in solitary confinement in prison would be easier to deal with. The only difference is that in prison you don’t feel devastatingly unwell every second of every day and you know that come tomorrow you will still have a roof over your head and someone will arrive with food for you.
The last few weeks I have been in a scary relapse. I am back to not being able to shower or bathe or prepare any meals. Standing is very difficult, moving is painful and sitting up makes me feel dizzy and nauseas. Most people have a fear of death. I no longer have any fear of dying but my fear of living is enormous. Every night I go to bed and wonder if tomorrow will be the day that I can no longer stand at all, or if my reflex to swallow will be gone and I will need to be tube fed, or if I wont have the strength to lift a glass of water to my mouth.
Imagine if this was your life and when you talked to Doctors about it all they could say is they have no idea what is happening and that you should get some rest.
You’d probably be a little pissed off and more than a little terrified.