Chronic Diva

Complete Autoimmune Gang-Bang Attack

I’ve been in a flare for a few weeks now. However, because there’s no rest for chronic spoonies, I’ve been going through tests for Crohn’s and then yesterday, what has apparently resulted in the ultimate “Fuck-You” from my body, a nuclear stress test and echocardiogram for my heart to try and figure what’s been going on with my blood pressure. It’s decided that it’s okay to play jump rope with my blood pressure, swinging from high to low and causing me some mildly, unpleasant symptoms in between.

For anyone who hasn’t experienced a nuclear stress test, let me just say it’s like stepping aboard the Willy Wonka Elevator Ride of Doom. But you have to get it done. And you get through it. It’s ten minutes- that fly by- of pure hell, but we live with symptoms that can be pretty comparable, that doesn’t go away. So, ten minutes, to a few weeks. I’ll hop on the elevator. Anyways, after it was done and I was heading home I started to feel progressively worse. Migraine, aching body: muscles and joints; the UTI I can’t seem to get rid of even on antibiotics was making me miserable; I was hot and cold and nauseated after I tried to eat dinner, then around 11pm I felt the coming on of blisters. I was thinking to myself,

“Seriously, what next?”

Here is where I insert a tidbit of chronic spoonie advice, never, ever pose that question to the Universe, because chances are you will get the answer. And it’s going to be an answer you don’t want. I slept like hell. Waking up every hour or so and in the morning, Crohn’s reared its ugly head.

“Remember me, bitch?” Oh yeah. That was fantastic. And while I am in the bathroom feeling like I’m at death’s doorstep, but recalling that no, that was the Elevator Ride of Doom and I had stepped off, those blisters on my mouth? On my fucking nose too! And there I was, head in my hands, certain that my body was plotting my death. There’s an Instagram moment!

Now, I’m sitting here venting, drinking Dr Pepper and eating potato chips because I need salt (dehydration), I’m in desperate need of caffeine, partly because of my head still aching and partly because of nausea and I don’t dare eat “real food” because I have no idea of what future plans my evil intestines might be working up. I’m pissed that all this is happening. Pissed that my body is so defunct that it can’t handle the tests. I’m wallowing in the Pity-Party, popping off the cork in the bottle of champagne, without any freaking remorse about it because this sucks.

When I stepped into the vehicle last night all I wanted to do was be a crying-whining- bitch about the entire experience, and I couldn’t. I had to buck-up. My safe place and I couldn’t unwind, I couldn’t lean on the person that mattered most. I felt lost. Adrift. The thing about being sick 24/7, in some shape, manner or degree, is that people forget that “not feeling” well isn’t some rubber stamp emotion that gets stamped on everything. They forget that these tests, which can be a picnic in the park for most normal humans, wreak havoc on people like us. The fragility of an already beat-up immune system becomes overwhelmed and for those of us lucky enough to win the multiple autoimmune disorder jackpot, can mean an essential gang-bang assault.

I’m exhausted but I can’t sleep. Hungry but the idea of food nauseates me. I hurt at a level I can’t even put a number on. Do they have a level 25? I’m tired of describing it. I’m tired of talking about it yet it’s the only thing that makes sense to do; I’m tired of waking up and realising that yes, there is a new and particularly painful place to hurt and I’m exhausted from trying to get in front of this. I contemplate this completely ludicrous idea of stopping all my meds, stopping all my doctors and just living out the rest of my life in peace. It’s not going to kill me- at least not immediately and the prospect can be tantalising. But it’s not realistic. Any chance I have to longevity and being pain-free requires me to visit doctors and have tests. For now, all I can say is that my body is waving the White-Flag and I surrender.

Thank you for listening. You mean the world to me. ~ Liza aka ChronicDiva