I’m feeling many ways about my disabling illness. There’s a good bit of anger, a lot of exhaustion, 6 feet of grief, and a lot of anxiety around whether or not I’ll get better.
There’s a part of me that has resigned itself to this new normal and a part of me that really wants to fight it. But the biggest part of this equation is my complete exhaustion.
Cortisol labs were inconclusive so I have to do the entire test again and follow it with an 8am blood draw to confirm whatever the results are from the spit test.
My doctor did say that it seems like I have IBS (shocking I know) so she gave me some Omeprazole and Dicyclomine to help with digestion (and I have since eaten 3 meals without feeling nauseated!) and Banophen so I can sleep. I’m hoping with rest and the ability to digest food my body will calm down a minute but I’m not sure. Everything went extremely downhill after my endoscopies and I don’t think my body has recovered from that trauma.
I still feel very lost. I’m trying to focus on making art because it helps, but I miss school, I miss all the things I was doing on campus. Being relegated to the couch all day because I ran an errand the day before is really demoralizing and upsetting.
I’m very sad because I feel like I’m missing out on so many things. I feel like I’m letting people down when I flake because my body just decided to quit at 4pm. I’m sad I can’t be doing all the things in all the ways I want to be. I’m sad that this is so hard and it takes such a toll – not just on me, but on everyone I care about. I wish it didn’t. I wish I could live my normal life but instead I don’t know that I will ever get that back and it’s terrifying. The FOMO is hard and real and I don’t really know how to cope with it.
Having an invisible disability on public transit is really hard. I know I look healthy and young and spry, so I don’t sit down when I should because I don’t want to deal with people judging me, despite the pain. I don’t want to ask for help because I look like I shouldn’t need it. I still try to do as much as I can by myself because I don’t want to believe I’m not well. Which is really counterproductive.
I realize that I need help if I’m going to make it through the recovery process without drowning in debt or dying from financial stress, because being sick like this makes looking for a job completely infeasible.
I live off my patreon, the podcast and a side gig which totals to about $900/mo….in the most expensive part of the country. 75% of my income goes to credit card bills and the rest is divvied up between transit passes and groceries. There are supplies that I need to make cooking and baking (mostly bread and hummus) possible so I don’t have to take a bus to buy a very small very expensive loaf of gluten free bread, but I can’t afford those either.
If you’re interested in helping me survive this terrifying journey there are a bunch of different ways to throw money at me and get varying levels of art in return (along with my undying gratitude):
- Support me on patreon! Patrons get access to download the files and behind-the-scenes updates – there’s currently an exclusive video of me reciting this poem. If I can reach $1k/mo on Patreon I will be able to sleep better at night and not feel like I should skip eating to save money.
- I listed some of my paintings for sale on Etsy
- I have an amazon wishlist of supplies that would make my day-to-day easier and enjoyable.
- I can be cashed or venmo’d a cup of coffee or gluten-free groceries.
- If you need a professional cat-herder to help you organize remotely or set you up with WordPress, I’m also looking for work.
My plan right now is to lean into art and let that bring me life while I continue to play this constant testing and waiting game of 3rd dimensional chess.