This started as a Facebook post to tell people what hairbrained scheme I’d signed up for next, but I had way more to explain than I could stick on a simple post, so let me elaborate…
I’m not going to bang on about it, but if you fancy having a giggle at me looking like pink covered death, I’m running the Worthing Race for Life next Sunday. Ok, not exactly running, I’m propelling in a wheelchair. Taking part is not only to support Cancer Research UK, but is a middle finger up to the stereotype of being ill.
This morning, my mum hesitantly passed on a message & conversation she’d had with a local physio who called on Friday. It seems that pain management had referred me to the home visit physio who called to book in to see me (yay!). My mum explained that I wasn’t able to speak to her because I was at work to which the response was “well if she’s healthy enough to work, why has she been referred to me?”. People deal with their disability & chronic pain in different ways. Some can’t work & I don’t judge them. I do work as a distraction technique which works because I love my job (despite what I tell you after 4 hours of year 8). It takes a team of people to get me there & my health suffers as a consequence of pushing too hard, but there is a twisted vision of disability in the UK right now:
If you’re disabled, you should work. “Don’t expect us to lift you out of poverty”
If you work, you can’t be disabled because you’re health enough to work.
Shock horror! People with disabilities are all different & we cope by being adaptive and imaginative (Cue my speech to text / video marking system). So yeah, this race is a fair bit about pushing my limits. One thing I won’t do is slide into this victim / saviour complex that health professionals use where I am eternally grateful that they deemed to lay their hands on me 😒. So far GP & OT have been amazing. Other local team are patchy at best. They’ve accepted defeat with cardiology and sent me to UCLH, next is to get them to do the same for Rheumatology.
So why do I need physio if I’m well enough to work?
I’ve been in pain a long time. Like PAIN pain? There were signs early on. I’m too stubborn to give in. Mr Geek deserves a medal. Research is important for all conditions.
Right now, I’m in a lot of pain. My hip subluxes daily, my pelvis dislocates as much, my knees & shoulders dislocate more often than I’d like, my back is a weird shape as the discs degenerate, my hands vary from ok to weird bendy claws. I sound like a bowl of rice crispies! I take painkillers, but my body is resistant to their effects, so the dosage I need makes my head fuzzy. The number of times my lower back & SI have moved has damaged the nerves to an extent where I can’t feel my feet anymore & on occasions go full ‘floppy leg’. Nerve function also interferes with continence. Combined with stretchy insides, this requires some adapting.
I’ve made peace with things falling apart & have created my own rehab program to maximise on the bits that do work in my upper body & core which involves daily squeezing of muscles to get blood flowing, massage from Mr Geek, & pushing myself to just bloody well get on with being an adult (between naps) and being involved in wheelchair racing. I still find it hilarious that I’d call it racing at the speed I go, but I’m working on stamina not speed. An average time for a new runner for a 5k is 25mins, I’m currently at 45mins (Although this is based on how far I’ve pushed as I’ve not gone full distance yet). What I need from this sport is the muscle function to stop my shoulders from popping out as my muscles now do much of the work that the ligaments & tendons should do. What I get as I push myself slowly & lopsidedly around a track in a funny looking chair is shouts of encouragement, smiles, normalcy, and fresh air, all of which do me the world of good. Today was hard & my right shoulder was not playing ball. I fought my way through training and subsequently created a mega pain flare which meant spending the evening in a morphine haze, strapped to a tens machine, and reduced to non-verbal communication via whimpers & tweeting. It was worth it though. It wanted me to stay in bed, but I didn’t. I may have been in an awful pissy mood, but I got out there & put my big girl pants on. Who needs legs when you have a lightweight chair?
Thirty years ago (age 6) I had clicky knees and my teacher called my mum into school as she was concerned about my hypochondria. I was always sporting a support bandage for a sprain, or crying during PE because my ankles / knees / hips hurt. I was tall & skinny and covered in bruises from falling, or kneeling, or who knows. I loved riding my bike, but 10 minutes into an off road ride I’d be exhausted & my knees would hurt. I was a weak child. I wet the bed – this was never to be discussed outside of the house (to my knowledge I don’t think we even told the dr). We tried everything, but it continued way past an age where you’d want to admit to it. (I’ve not even blogged about it before, but it’s time to put that piece of the puzzle into place).
Twenty years ago (age 16) I didn’t know that everyone else didn’t ache like hell by bedtime. I certainly knew that it wasn’t normal to find yourself desperate to pee and not hold it. I couldn’t stay awake as long as everyone else who could party all night. I was miserable. We were teenagers, so walked everywhere and my hips would scream & getting to hot would lead to being so dizzy I could hear my heartbeat whooping past my ears. Consequently, I was told it was in my head & given antidepressants. It became a self-fulfilling prophecy with me believing that the physical pain was in my head. For a number of years I self harmed through traditional means, risky behaviour, and poisonous relationships.
Ten years ago (Age 24) I had two tiny people who arrived early, a c-section scar that tore and damaged the nerves in my stomach, shins of a 10 year old (bruised) and was in a whole lot of pain with my back, hips & knees. I had migraines & after getting really run down with babies, university, & working evenings at the theatre, I caught viral meningitis. I used sticks & a basic folding wheelchair on and off when my back was particularly bad. Physio tried to reposition my spine & damaged my pelvis permanently. Each injury was looked at in isolation & we had no idea why I had such bad luck with my joints.
A year ago I was in daily pain, taking regular painkillers and using sticks to move around most days. I had no idea why I was in so much pain & my joints were so unstable. Picking up.my laptop bag, I could feel my elbow & wrist separating, so Mr Geek bought me a bag on wheels. I was exhausted & aside from a diagnosis of osteoarthritis, was seeking help to understand my body. My GP was reluctant, but gave in when I begged for something more than just opiates.
8 months ago, I could barely move out of my wheelchair or keep hold of a meal & had trouble swallowing. I lost weight & we wondered how bad this would get. I saw a specialist in connective tissue disorders who put all the puzzle pieces together with a diagnosis of Ehlers Danlos Syndrome type 3 (Hypermobility) with a type 1 crossover (Classical). That diagnosis changed everything. Ok, it’s a diagnosis without a cure, but it’s one that explains to A&E why I’m there, it’s one that paved a way to pain management, it gave me a foundation to work from. The pain was real & now I knew why.
Now I’m going to propel myself 5k in a paralympic style racing chair (lent by the lovely Harriers Team). Mr Geek since we first met has been my relentless supporter, physio, carer, chef, comedian. He quite literally picks me up when I fall down. He has facilitated me fighting my own genetics more than any doctor or physio. He’s put a fair amount of his life on hold for me. This probably isn’t the time to get into why Mr Geek isn’t allowed to run alongside me (men get breast cancer too & yet are banned from this event)., but he’ll be there at the finish line as a real reason to make the full distance. I’m by no means better, but we have so much more of an understanding of my body & how it’s likely to function. Knowledge is power.
So, I’m partially doing this as a thank you for believing that I can fight this in my own adapted way & also to support someone very special who’s kicking the big C in its balls. Cancer Research could save thousands of lives and countless more family & friends who are affected.
When the consultants finally get around to working together instead of intellectual willy waving, there is hope for a treatment for Ehlers-Danlos Syndrome. Until then, I shall wobble my way along the track supporting & representing those who can’t.