At the end of summer camp, 2024, I was presented, by a good friend, with the award "Best at Not Taking Care of Themself."
In the months following, I experienced, what I consider to be, my worst health spiral to date.
-----I've always considered myself a strong person. As a kid I braved through social isolation, through undiagnosed fibromayalgia, through physical and emotional and sexual abuse by parents and instructors. I became a parent, myself, to my little sister in 4th grade, and to my own drunken parents even before that. I excelled in the arts, in academics, in sports, in my communications with adults around me. I ignored the voices in my head, the hallucinations in my shower, the acid in my throat. I let it rot
and rot
and rot
and rot
and i let my mind rot
and i let my body rot
until..?
-----I'd be lying if I said I wasn't self concious about my apparent inability to properly take care of myself, but it's struggle enough to avoid actively causing myself harm. I have been getting better?
GEN WHY DOES EVERYTHING HURT OH MY GOD.
had to stand up today. ruined my day
any time i have flare ups i get like flashbacks to my time in PT/OT (which sounds dramatic but that was actually kinda traumatizing.) so heres my rant for today:
A few years ago, in my years of pediatrics, I was given the diagnosis of AMPS (Amplified Musculoskeletal Pain Syndrome). The diagnosis is pretty much what it sounds like; defined as a condition where the nervous system overreacts to pain signals, causing severe, persistent pain disproportionate to any injury, often leading to fatigue, sleep issues, headaches, and skin sensitivity (allodynia). It is a diagnosis typically given to children and teens; once one reaches adulthood, AMPS, if the pain is still present, is typically rediagnosed as Fibromyalgia or CRPS (Complex Regional Pain Syndrome.) The only real difference between these conditions is that AMPS is believed to be “curable,” through extensive physical therapy, particularly desentization therapy.
What is desentization therapy? These terms are very simply named; desentization therapy is also what it sounds like: it involves repeated, varied sensory input (like textures, pressures, temperatures) to retrain, or desensitize overactive nerves, resetting the pain threshold, often using techniques like brushing, rubbing with textured cloths/towels, lotion massage, vibration, or temperature changes (ice/warm). Essentially, the premise is that if one experiences enough pain, their nervous system will become so overwhelmed that it will correct itself (or just become used to the pain.)
Sounds reasonable? Don't answer that. Genuinely, the whole treatment plan is absurd. Putting people (especially children) through intense physical pain for extended periods of time does not cure a chronic condition, and is nothing but traumatizing. Being taught to stay quiet about your pain, or growing used to being in constant pain, is not a cure.
My time in physical & occupational therapy involved these desentization techniques. I’d have to run my hands under freezing cold water, rub my skin until it turned red, and regularly have to hit myself (or be hit by the therapist.) I would genuinely sob at these sessions because it hurt so bad. (To put it in perspective, it hurts me to be brushed with a feather. I'm not even joking, this is a real test they did to see if I had allodynia.) What was it all for? Nothing I guess. My life was hell the entire time I was in PT/OT, and if anything, it only made me feel worse. Able-bodied people don’t understand what it’s like to live in constant pain, and their treatment plans reflect this.
What does help? Mobility aids, CBT, talking to other disabled folk. Genuinely anything else.