A Guide to this Life
I may read inconsiderate because one guide will not help us all. But damnit, a guide on how to adjust continuously to this disability lifestyle continuously angers me as I struggle with grace with this disease.
It rattled my brain that “hell no, there will never be a cure for this debilitating disease. Big Pharma makes too much money off of my illness. I max out early on all of my drugs. My one infusion visit out of two is over $100,000 to calm the disease’s progressions.
My illness makes Big Pharma too much money. I will forever be at the mercy of chronic pain, a Baclofen pump, spasticity, pills on pills and supplements galore 🥹.
A guide would be to have faith in one’s self. Take it slow because everyday will unfortunately be different. I am finding hobbies to stimulate my brain, constantly challenged by my brain disease 😑 (puzzles, apps such as Socratic, Crossword Jam, and Royal Match).
Pharmaceuticals will not help, so I must help myself. Cures could have been made, but again, as always, I must come fight for myself.
I must stay motivated to get back on my feet. I don’t know how, nor when, but this wheelchair life, if I can contest, is damn sure not for me.
🖕🏾 🖕 🖕🏿
F U C K M S.
There will be nothing to save me, but myself , so I must start putting in the work physically and mentally to be better than I was the day before. Getting on my feet will be a test of my diligence, 😮💨 because there is nothing else for me to investigate.
At the end of the day, there is no guide, but myself. My experiences good and horrendous will show me what to do and what not to do.
I must
