During a normal week I spend a few days with my beau in Rhode Island and the rest at home. It’s been a real tug of war as he would like me to spend more time down there and I… would like to spend less (not because of him but because driving all that way and then engaging in activity usually leaves me WASTED the rest of the week that I am at home.) Because of circumstances I was able to spend a week and a half down there this last visit which was super long and WOW. I was not right not during or after!
My beau is an extrovert and has a lot of friends, family engagements, and loves to travel with me as well exploring antique stores and whatnot. I love it but it’s… a lot… to expect me to be up at 9 or so and stay up until at least 2am every night socializing. Even when he went to work and I spent all his working hours sleeping I still couldn’t keep up.
He doesn’t know it but during the trip my EOE acted up and I choked on food 3 times in the span of 2 days, the last time was when his friends were over and I excused myself to the bathroom for 15 minutes to try and regurgitate and/or dislodge the food I had stuck in my throat. Oh man, I was SO CLOSE to not being able to that I was within minutes of abashedly going downstairs and being like, “I know you’re all rocking this birthday party but I gotta go drive myself to the ER…” Luckily it didn’t come to that as I was finally able to spit the offending material up. I returned to the table pretending everything was cool and no one asked me any questions so I let it go.
He’s also unaware that for three days in the middle of this trip my body was so stressed out my liver basically went on strike and that I had white poop and then after that I was shitting food that looked exactly the same coming out as going in. I’m talking whole chunks of broccoli and veggies. I’ve never had that happen and to be honest I was a little freaked out. Thank god the next morning things were back to normal because I was at a loss of what to do.
On top of this I was running low on energy likely due to not digesting the food I was eating and I ended up having two really bad panic attacks that I learned were due to my plummeting blood sugar. My chest hurt SO BAD. Knowing I was having all these digestive issues I did something I almost never do – I ate a candy bar. Almost immediately I felt better but it was scary. I told my beau, who was at work, I stole his candy bar and why but this was the only inkling I gave him that everything wasn’t alright. And I do that because he worries and wants to take care of me and when I am not doing well he tends to keep me close to home doing nothing. I know this is probably the correct thing to do but I don’t want to waste my time with him either so I push myself… a lot.
I had a wonderful time despite all this but I realize not being forthcoming with my beau is… not exactly right. I also know it’s really tragic this is just my natural response to these situations – to hide them like a dying animal because I know no one is going to want to deal with me otherwise. Isn’t chronic trauma delightful?!
At the end of this trip I’d run out of spoons and was basically just tired, irritated, and combative. I was falling asleep at random just sitting in the living room with his friends. I had picked numerous fights with the GPS to the point we had to drive home because I was setting off his moods with mine. At one point I was so overstimulated I could feel electricity coming off the cat. I could also feel electricity emanating from my feet. I could not tell you if this was an insomnia hallucination or just being REALLY hypersensitive to the environment but either way it was really unpleasant.
By the time I came home I was AMPED UP. Could not sleep. Could not calm down. Was also in a lot of pain so I was forcing myself to do nothing but rest and I WAS BORED. And upset. Because I really thought I could do this – spend a week and a half away doing a normal amount of activities without consequence even though I haven’t been able to do that since I was 12. I’m 37 and still refuse to believe what is reality to me. And I guess part of that is because it has become impossible to live on disability especially since the covid relief is over and my food stamps have been cut to less than what a week’s worth of food is. My mother and step father who are retired without savings or extra lovely bonuses are struggling to keep the house. This boomer “starter home” on 2.5 acres of unusable swampland has a SIX THOUSAND DOLLAR yearly tax on it! Now I am absolutely terrified of what is going to happen if my stepdad, who hasn’t taken care of himself a day in his life, dies. I feel simultaneously trapped and wanting to flee like a rat on a drowning ship. I know it’s not my responsibility to take care of my mother but I also live with her… soooo… it’s a two way street. If she can’t keep this house neither can I. And that’s a problem because that leaves me with only the flimsiest of futures.
I’ve set up a fish tank for my own sanity, something to take care of (because I am SO missing this in my life) and something to fuss over so I’m not constantly dwelling on the doom and gloom that is likely the next chapter of my life. It has plants in it, one shrimp, two fish, and four mutant bladder snails. The plan is get more shrimp and fish and just have this bit of nature in my room calming me the fuck down. We’ll see how that works. In the meanwhile, I need to see if I can sustain some sort of work fully knowing that showing I can work at all will likely result in my disability, health insurance, and food stamps being taken from me. It’s a shit time to be alive with a post viral autoimmune disorder that doctors refuse to officially diagnose. And that’s not good because I know there is a massive wave of Long Covid survivors going through exactly the same thing I did when I got “the kissing disease” as a teenager and my health spiraled into a permanent shit state. So, if that’s you out there reading this, I see you, you are valid, you are real, and this does indeed suck. Don’t let anyone else tell you otherwise. Also vitamins, yoga, and magical thinking are not cures, they’re just crutches healthy people use to judge you because deep down they’re terrified they could end up like you. So instead they swim in denial. “Oh but I live a healthy life! That’ll never happen to me!” And doctors who are still refusing to believe post viral illnesses like Long Covid are a thing? They’re everywhere and fuck em’. Find someone who will listen. Only you are an expert on your body.
This has turned into a bit of a rant. I am just… so tired of fighting. So tired of being disappointed at my own limitations. So tired of reality crushing my dreams. So tired of feeling worthless. I just want a little shipping container home in the woods, with no neighbors, where I can recuperate and actually be useful sometimes