Stripey Warriors

A few weeks ago, I blogged about losing my senses and signing up to the local Race for Life 5k to raise money for Breast Cancer research. Today was the big day & a few of you asked for some photos.

I’m currently curled up in bed with all the painkillers, shoulders loose (only 1 popped out), bruised, skin torn, & a bit crispy from the sun, but it was worth it!

I raced with Mic & Lizzie from my local wheelchair racing club. We used racing wheelchairs because they’re lighter & just like a decent pair of running shoes vs. work shoes, they’re built for sport.

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Spoiler alert! We all finished in record time with Lizzie beating all 3000 runners by finishing the whole 5k in 1st place in 17 mins!! In her own words “disabled, ha! We’re enabled.” Mic finished in a stonking 27mins 18secs after aiming for sub 40 mins and I came in at 28mins 10 secs after aiming for sub 60 mins. Fair to say, we smashed it (mainly due to gorgeous people from our racing club positioning themselves along the course & shouting encouragement).

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Joining us was the lovely tutu’d Rachel who despite only just being thrown into secondary teaching and arriving slightly wild eyed with the look of a woman who’s been surrounded by year 8s for the past fortnight, ran alongside me shouting classic encouraging statements like “get out the way! She can’t brake!”, “Don’t slow down for the dog! Move your hound!!!”, “8 minutes left!! Have any of your limbs begun to detach?”, “We’re 1k off!! We’re going to fucking make it!!” (Love you rach 💓).

To prepare, Mr Geek had learnt how to strap up my upper body with kinesiology  (physio) tape and spent the morning creating a web of sticky fabric to hold my shoulders in place. This was supported by leather wrist braces & leather wheelchair gloves covered in latex cohesive bandage over my hands & wrists creating sticky paws that allow pushing of the rims whilst protecting my joints & skin (the last few sessions at training have resulted in either torn skin or massive blisters- EDS skin sucks). Today they held out perfectly.

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Starting was difficult because of the sheer volume of people (3000 people running!). Lizzie is an absolute pro & took off like a rocket. In fact, she was so fast that Mr Geek didn’t get any finishing photos of her as she got back so fast she took everyone unawares with no time to grab the camera!

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This is by far my favourite photo of Mic. The fighting spirit is strong in this one. She was clearly in pain and yet giving it absolutely every last ounce. EDS picked a tough fight with her & she’s kicking it’s arse.

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It may have only been 5k, but you know what? It was hard. Pushing against the wind & on a camber for the first half left me like a big ball of lactic acid, panting and wondering if I’d actually make it. I was vaguely aware of my right shoulder wobbling, but had seen our coach on the way up and was not going to let him down by wussing out. Rachel double backed at the end and started running with me at the 2.5k point. Then I heard Kim shouting encouragement and something snapped inside me, but in a good way. This is going to hurt like a bitch anyway, so let’s make it count.

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The crazy tutu’d woman & I went hell for leather on the way back, picking it up another notch on the final 1k. Adrenalin totally took over as my arms kept going despite feeling like they were on fire.

With a final “I can see the finish! We are fucking champions!!” from Rach, I looked up and saw our time. What you see here is utter elation at finishing what people said I couldn’t do & sticking a massive finger up at that “there’s no cure” diagnosis. Mr Geek found me shortly after & hugged me very tight. He got his kickass wife back a little bit today.

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The after effects of kicking quite so much arse aren’t quite as much fun though. I expected my joints to hurt (and OMFG they do), but I also caught the sun which is very unlike me… Whilst wearing tape. This is not attractive. I also pulled the tape away from my boobs a bit too quickly, tearing off strips of skin! Cue much germolene over weeping open skin. At least it detracted from the joint pain!!

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Despite feeling like I’ve been hit by a bus and knowing how hard the next week is going to be after pushing my limits over what anyone expected, it was totally worth it. Wheelchair racing has impacted my health both physically and mentally. I’ve rarely looked forward to physical exercise pretty much ever, but I buzz before racing. A lot of that is due to the people. We may all have disabilities, but we’re adaptive, bloody minded, slightly unhinged, and totally enabled.

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A Personal Best – #RaceForLife

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.

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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.

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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?

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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?

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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.

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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.

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