Like all X-men, I have a back story. I have genetic mutations that make me special and ‘other’. I can’t freeze things, I’m not part-wolf, I don’t have lazer sight, and I can’t fly. I use a wheelchair, but unlike Prof. X it’s controlled by a joystick and not my mind, although recently I’m starting to resemble him in the hair department.
I spent my formative years chasing letters after my name. In fact I’d just started looking at the final frontier of a PhD when a whole new set of genetic mutation induced acronyms arrived in my life. My medical diagnoses are a series of strange acronyms that most people have never come across:
EDS – Ehlers Danlos Syndrome. A genetic mutation of collagen that makes me the Z list of X-men where my connective tissues such as ligaments, tendons, muscles & internal organs stretch further than they should and forget to stretch back causing daily joint dislocations or subluxations (partial dislocations), and slowing of gastric transit as stretchy insides means… yeah. Ew. Imagine Plastic Man’s ability to stretch, just without his ability to stretch back. Every dislocation makes that joint a little more loose and more liable to pop out again. An Adult has 206 bones; give or take adult bone fusions, that gives me 250 – 300 joints to play with daily.
My skin likes to get in on this action being velvety soft, but ultimately tearing or bruising at the slightest thing. There are times and places where this is not welcome! It’s like being the anti-Deadpool : beautiful skin & zero ability to heal.
POTS – Postural Orthostatic Tachycardia Syndrome. A form of dysautonomia which is a neurological condition where your autonomic system (which controls things like heart rate, digestion, body temperature etc) goes haywire; POTS means my heart rate rises 30 beats or more from laying down to standing, or sometimes even just sitting. The result of this is a lack of oxygen to the brain and ultimately fainting. This isn’t fun when you’re the teacher and you wake up to a class of kids terrified that they’ve actually killed you. This happened twice this term. My teaching days are numbered.
POTS also comes with heat, exercise, and often food intolerance. Any of these can make symptoms of palpitations, dizziness & nausea worse. This means my arch nemisis is a hot bath or shower.
CRPS – Let’s save the best til last.
There’s a pain scale that suggests that unplanned childbirth hurts a little more than amputation of a finger without anaesthesia. Apparently a CRPS flare rates higher than this.
The daily subluxations of my Sacroiliac (SI) joints
(which is the bit of the pelvis that isn’t meant to move!) triggered a neural pain response that hurts worse than any dislocation I’ve had.
My CRPS flares are focused around my pelvis and at their worst feel like those laser eyes I don’t have are inside me and burning my bones. White hot lightening goes down my legs and I flip from begging my husband to massage them to not being able to bear him breathing on my skin. I can throw all manner of drugs at this, including the anti-epilepsy drugs that destroy your synapses (you’ll willingly give up a lot for this to go away), but the only thing that gets through a real flare is my TENS machine on a permanent low buzz.
So as mutants go, I’m a reasonably sucky superhero. But, despite, or perhaps because of all this chronic pain, I’m much tougher than I look. Alongside my husband, who’s also my carer, I’m carving out a new life for myself by developing an app for people with similar chronic conditions called Expect Zebras. I have the temper of Wolverine, the mental health of Harley Quinn, and apparently the pain tolerance of Deadpool.
A friend of mine describes me as Oracle. Who, with a former life as bat girl, doesn’t let her disability impact upon her being a top programmer / hacker & part of the suicide squad. If anything, she uses being pissed at having her independence snatched away as rocket fuel.
I like her style. She looks like a woman with a tens machine & a lot of focused frustration.
I’m not bat girl anymore.
Holly is a mum to 2 mighty girls, a computer science teacher, programmer, and co-owner of Expect Zebras – The Chronic Condition App & Wristband. She’s learning to live with disability through EDS, POTS & CRPS. Some days more gracefully than others.