I'm so sorry that you have to have a body
The transition from being able-bodied to chronically ill and basically partially disabled has been frustrating, even though I have seen it with my mother and grandmother, so I thought I was prepared for it. No I wasn't. I wasn't prepared how every day all my little energy goes into micromanaging everything, just to keep me functioning. I have to:
- be mindful that I have only about 3 hours of energy around mid-day, so if anything needs doing, that has to happen by 1 pm;
- make sure I eat at precise interval, because when I miss it by an hour, I start feeling shaky and sick;
- micromanage what I eat to be the most nutritionally dense thing in the smallest physical quantity so that I don't get shaky and sick, but also don't get gastrointestinal issues;
- spend an hour after every meal obseesively cleaning my teeth and gums, because if I don't my mouth covers in sores and I cant eat for a few days; se above points about shaky and sick;
- spend a stupid amount of time smearing stuff on myself: Voltaren on my inflamed veins; cica baume and other calming creams on my burning face; vaseline on my peeling hands and feet; antifungal on my toes;
- make sure I drink the gross electrolite powder drink a few times a day, otherwise I bleed from my rectum for a few weeks, because of reasons;
- obssesively drink liquids, because I have to keep flushing my bladder, otherwise the chemicals will fuck it up; or my veins won't be accissible for the next IV or blood draw; or I will just feel sick.
- make sure I actually exercise;
- write down every single thought as it occurs, because the brain fog is real and nothing stays in my brain for longer than 45 seconds;
- make sure I keep a sleep schedul;
- actually try and maintain *social* life online???
Augh.
This song never hit so close to home before:
This sucks, I'm sorry you have to go through all that hassle without much reward for your effort while it's going on. I hope that you'll get better soon, and that you can find small precious moments of happiness in the meantime.
Sorry to hear it's been so hard! The initial two months (doxorubicine/cyclofosfamide) are generally a lot rougher than the follow-up chemo (carboplatin/paclitaxel), so it shouldn't stay this bad. >_<
Shit, what a hard time you're going through - I'm so sorry to read this. I hope things get better soon and wish you little happy moments, a smile, a few moments without the thought of feeling shaky and sick...and strength to get through the days. I'm sending hugs...
Sorry to hear that. Hope it get's better somewhere down the line.
its fucked as fuck. but im still with you! write that down!
I'm sorry to hear this. Please, don't give up. I know it's a totally different story, but my dad had to go through chemo, too. He recovered from everything, although the way was hard. I wish you all the strenghts you need. And fuck cancer. Nobody needs that...