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Along with other fantastic initiatives to improve the visibility of invisible illness (check out #hospitalglam
), the #spoonieselfie challenge continues. These pictures continue to help me feel less alone on my greasy housebound sweatpants pain days, and I thank you for your submissions.
Please continue to tweet, gram, fbook your chronic pain styles, and submit them with a description to email@example.com. Include your condition(s), description of your pain and any coping strategies you used in that particular moment.
Mere minutes after smashing my face on some furniture because my hip gave out due to EDS/Hypermobility, and I had already not slept for 64 hours at this point, due to some horrendous painsomnia. Funny thing though, this very obvious injury hurts SO MUCH LESS than my smallest of fibromyalgia, costochondritis, torn discs and subluxated vertebrae, hypermobility, or chronic fatigue pains. Even the moment of waking up on the floor with a bunch of blood in my hands was underwhelming, I’m so used to pain that I was just kind of pissed that my face was messed up looking and bleeding and would now obviously take some time to heal, but I never once thought “wow, my nose really hurts” because I still am in agony so much worse everywhere else!
Yet, I got so much sympathy for my raccoon eyes and purple, lumpy, swollen nose. I get very little for my invisible, disabling illnesses, even though they are the reason I have two black eyes and an almost-broken nose in the first place!
I have Myalgic Encephalomyelitis/Systemic Exertion Intolerance Disease, POTS, Fibromyalgia, Dysautonomia, poly-neuropathy, Chronic Pain, IBS and Insomnia.
When I make the effort to attach ice packs to myself, that means unbearable pain! It begins to hurt just looking around, my body feels like it’s on fire AND being attacked by tiny evil leprechauns with knives. All while my insides are trying there best to be on the outside.
Coping? I’m still working on that, but I use ice packs, heating pads, essential oils, and roll on Real Time pain reliever.
Carly Ammon can be found on Twitter @MECFSproblems and instagram @Sickgirlphotography
I posted this on Twitter during my #ChronicLife, 48-hour live tweeting about chronic illness. This was after two hour-and-a-half commutes, being in class all day, and not sleeping well the night before. I got home and literally had no spoons left. And I had a headache to top it off. I tweeted, along with the image, “This is the face of pain. Sexy, right? I wonder where this falls on the pain scale.”