Please Don’t Touch Me – A Response To #JustAskDontGrab

If you follow my personal twitter, you’ll be familiar with my pinned tweet.

You’d think this was just common sense. But you’d be surprised how many tweets like this are screamed into the ether that is twitter.

My own lived experience of this is personal to me. I am aware that I have the inherant privilege that comes from being a middle xlass white woman raised in the south of England. When people touch my chair, they’re often quite taken aback when they are lectured by a stern BBC British accent that occasionally verges on the clipped tones of Mary Poppins.

I have grown accustomed to being leaned over in supermarkets and often pushed out of the way like an abandoned shopping trolley.

My standard response is to put on my brakes & request their name as grabbing a mobility aid without consent is assult (by UK law the act of pushing is assault, if they continue to push without consent this begins to border on kidnap).

Now, the act of putting the brakes on suddenly causes a few issues. Firstly momentum dictates that I’ll likely be tipped out if they shove too hard (I have an active user chair that’s designed to be “tippy” to make it more maneuverable). This is a calculated risk – if I do fall, that’s probably a few dislocations & potential for fractures because I’m what happens after elastagirl retires.

So I had my own way of dealing with what I thought was just an irritation. Then I saw a tweet thread that made me realise quite why I insisted on paying an extra £150 for tiny folding habdles on my chair (it’s a deterrent, but people still grab / shove the back of my chair).

This tweet by @BergBronwyn made me realise that the reason I get so cross with being moved is that I feel vunerable in my chair.

But it wasn’t just the tweet that caused concern, it was the streams of responses from people who saw no issue with taking away someone’s autonomy. I’ve made no effort to hide identities because it’s already in the public domain and this type of behaviour should be called out.

I’m still unable to work out if @chadwhite45 was a troll or just completely ignorant.

And he persisted:

And he certainly wasn’t alone in mocking her – some of these are ableism at its finest:

And since this reached so many people, I was really shocked that many were blissfully unaware of the increased risks when you are disabled.

  • As a disabled woman you’re twice as likely to be a victim of violent assault.
  • As a disabled woman, you’re twice as likely to have been sexually assaulted in the past 12 months
  • 1 in 5 of disabled women reported financial, physical, or sexual abuse from a partner – for both men & women, this statistic was twice as high as non-disabled people.

It’s no wonder that we feel more vunerable. And of course this is fuelled further by the fact that if I’m pushing my chair & you push it suddenly, I run the risk of wrist, elbow, or even shoulder dislocations. Even without EDS, an unexpected push could cause damage to the limbs that we need to be mobile!

It’s also really scary. I can only compare it to walking happily along when a complete stranger picks you up & carries you off. You have no idea why, or whether you’ll be hurt. But we can avoid these with two simple rules:

  1. Ask if we need help
  2. If we say no, then don’t assume you know better

So seeing as I’ve quoted many tweets throughout this post, I’ll end with what I thought was the best response of all.

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Sunday Night Optimism 

You know those awful ten things posts? Yeah, I’m going to do one of those. 

I was being a bit of a grumpybum earlier, so decided to a list of reasons to be happy.

*accessibility warning – there are some fast rolling image gifs at the end of this post*

1. This guy. We’ve been together nearly 13 years & married for 11 of those this year. Aside from snoring like a dying gruffalo, he’s pretty amazing.

2. Mrs Gypsytree visited this summer. We didn’t get to see each other as much as we’d like as their summer started a month before ours does, but we got a lovely evening in where we celebrated them finally owning a real proper house in Norn Iron. I still miss her being a few minutes up the road, but they’re ever so happy & that’s good. 

3. I’m superhuman. Wheelchair racing has transformed being in a chair from a loss of mobility to a doorway to new friends, supportive but very real competition, and a sport that I can participate in for the first time since forever without crippling pain. Don’t get me wrong, it hurts, in fact on the first corner of this particular race my hip popped so badly that it came all the way out & I pushed 800m with a fully dislocated hip & a subluxed shoulder. At the end I was gasping for breath & Mr Geek had to haul me out of the chair and push everything back in & feed me morphine.

BUT, I competed in my first race with my friends, showed people we’re enabled, & we all came away with fist bumps and massive smiles.

This is the face of someone who is going to FINISH this race.

4. We’re getting somewhere with the joined up thinking. I’m now officially seeing the neurology team at UCLH and not only are they looking into the POTS symptoms, they’re being joined up and looking at the other weird nerve issues with the lack of feeling & strange reflexes in my feet, and looking at ways to manage the EDS. It means more time & lengthier stays here, but it’s progress and very positive. They even encouraged my chair racing as a positive way to keep the autonomic car crash that is my body as functional as possible 😆

5. Half way there! The scary seven are still enjoying lashings of ginger beer together. Despite now living 600 miles apart, the minute they get together they’re back to being the same tribe that they’ve always been. This year we couldn’t physically make it up to “our tree” so settled for a bench instead. They didn’t seem to mind, although this once again confirms that it is impossible to get a photo of all of them making a near sensible face!

6. My life doesn’t have to be restricted to reality. My hands may not grip pens or paint brushes anymore, but on a good day I can hold a controller and paint virtually. The VIVE has allowed me to return to using a virtual paintbrush & now sit quietly in a vast dark room and paint in 3D. The best bit is I can choose from any size brush and whilst the virtual brush size changes, the controller remains the size of a crutch grip & is as light as a tv remote control. I’ve learnt how high I can lift my arms now without dislocating (Although I still get engrossed and utterly forget, then re-enact the scene from Horton hears a who where the mayor runs from the dentist). Weirdly, I can self-propel in VR & it feels like normal.

7. My friends are just as daft as me. When it comes to showing cancer where it can shove itself, we certainly did. The volume of physio tape it took to hold three women with connective tissue disorders together must’ve made KT rub it’s hands together, but nothing beats seeing your proper mega serious marathon runner friend skipping beside you in a tutu. To top it off, Lizzie on the far right, won the whole flipping race as the 1st finisher in just over 17 minutes. There’s a reason she uses the hashtag #RoadToRio in her posts. And when (not if) she brings home a medal one of these days, I’ll still be chasing her like a slightly defective whippet after a rabbit!

This was one of my happiest days from 2016.

8. Yeah, ok, it had to be in there somewhere. I’m not out there kicking arse every day. Quite a lot of days I’m in here wondering how I’m going to make it those 5 meters to the loo without ending up on the floor in a heap. So to keep me amused, I have Pokèmon Go! There are a few teething issues with servers and the fact that the developers rather forgot that people with physical disabilities may have rather an issue with walking that 10k needed to hatch an egg, or get out there & explore for PokeStops… I’m sticking with it for now in case they add some more accessible features. Until then, here’s the bastard that chewed up 11 of my pokeballs & still got away!

9. Friends. But more importantly, friends who understand why I cancel plans at short notice, double book myself because my brain is shot to pieces, who still invite me to things even though I’ve declined the last four hundred times because I’m too tired. And who get that me being too tired means I’m probably actually in too much pain to be near people. Some of them are fellow Spoonies, others are just empathic enough to see through the “I’m okay!”.

They’re good people. 

10. And very much not least are Beanpole & TinyPants. They are wise beyond their years and not given nearly enough credit for the caring that they do. I have the best time with these tiny little ladies even if I do have to pretend I’m actually a grown up who’s in charge on occasions. There aren’t many 10 year olds that just stop acting up or having fun because they can see that mummy is in more pain than usual. They carry stuff, they give up trips out to snuggle in bed with the TV, they get on with their homework so I can nap. I may regret being so impressed with them once they turn into unresponsive grunting teenagers!

For now, I’m pretty thankful & optimistic for a good week. I hope yours goes well too. Xxx

How Do You Get Pikachu on a Bus? You Pokemon! It’s #PokemonGo

Are you aged between 29 – 39? Do you have a smartphone? If the answer to both of these is yes, then thank you for taking the time to read this instead of playing.

Sorry? Did you just ask what am I playing??! Although not officially released in the UK yet, I’m playing a bizarre online augmented reality game called Pokemon Go!

Remember this little dude?

Now, imagine that you had a pokeball only it was your phone… and then you saw a version of Google maps that helped you locate your Pokemon…. and when you found one you saw it augmented over an image (using your phone camera) of where you actually are. And there you have it – the 90s teenager version of Ingress. Same premise, cuter graphics, more addictive because you’re collecting cute stuff. 

The clever idea behind these augmented reality apps is that they encourage slothernly “teenagers” to walk & explore the local area (devs, the kids aren’t playing. Hello from the over 30s club). And it’s working. My Facebook feed is full of friends posting about going out walking just to capture more pixels… but what if you can’t?

I saw a number of tweets on launch day suggesting that the app is ableist as it encourages you to walk. I don’t wholly buy into that, but I am looking at ways that I can play without the walking bit…

1. Get out on wheels

Fair play to those who are walking, but some of us need a bit more help with mobility. As an alternative, I tested out playing whilst in the back of my work taxi on my way home. I captured a few, but drove past the training posts waaaay to quickly to use them (no. I didn’t ask to stop – I have a shred of dignity left). Potentially we could also start exploring with me in my wheelchair. This is a limited option locally as my ability to self propel on any camber or incline is crappy at best & the local pavements are so poorly maintained and cause enough jolting to take me out for days after a few minutes. (I did invite our local councillor to come for a walk with me… as yet no response). There are places however, with reasonably flat pavements without the cracks & dodgy drop curbs that we could explore.

2. Stick to places I go anyway

This sort of defeats the object. I would then be restricted to collecting at home (actually, not bad), at work (whooaah unprofessional), and at the “gym” (by gym, I mean pool where I bob about until the indignity of using the ducking stool has worn off, then sit in the warm bubbles massaging my back).

Oh, and Tesco. Maybe I’ll find a raikou in the knickers!

3. Invent an Accessible Life hack

Part of losing my mobility has been channelling all of my creativity into finding alternative ways to just do shit anyway. 

Can’t type – shout at ipad. Can’t stand – sit & be louder. Can’t swim – strap float to chest and paddle like a broken turtle. Can’t walk – get wheels. Can’t run– wheelchair racing. You get the idea…

So, what about combining “trips out” for the kids with collecting? We make it a family game. We drive somewhere, I collect what I can, then challenge the kids to collect as many as they can…. the only down side to this being trusting the kids with my phone 🤔.

Ultimately, I’ve been waiting for this game for more moons than I cared to admit to. And OMFG I want the wearble! Just look at it! Loooooooook!

So after all the hype, I refuse to adult over this. I’m bloody well going to play. Even if I have to find a solution to this walking crap. I need to – I have a feeling they’ll be some “friendly  competition” at EGX this year 🕹🖲🎮

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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Electric Dreams

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I’m an 80s baby, and as such will always sing these words with a muffled hum for the rest of the lyrics and an image of the film playing in my head. But why the bog title? Well, Sunday night is brought to you courtesy of the TENS machine (again). Despite all attempts to have a restful day today after yesterday’s escapades, my left shoulder took offense and tried to leave home. It’s usually my right one that pops out, but there’s nothing like a surprise sublux to end your weekend. EDS likes to keep us on our toes. As is usual for recent weeks, dihydrocodeine has little to no effect above standard baseline pain, & oramorph is barely touching it. We tried massage to help bring down the muscle spasms that are creating almighty knots & the end effect of that was Mr Geek hurting his fingers. Ice would reduce the swelling, but make the muscle knots worse, & heat vice versa, so TENS is the next option in the toolkit.

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One pad on a bicep, one on tricep from the grey channel, then one along the shoulder tendon & one just inside the shoulder blade (where the knots are) for the white channel. The pain Management team have suggested a bespoke setting of 100hz frequency & 200uS pulse width for 90 minutes at a time. As a general rule, the following settings are worth having programmed into your machine (all using 170 – 200uS depending on what feels right for you):

80 to 120Hz-acute pain

35-50Hz-muscle stimulation

2 to 10Hz – chronic pain

I’m using the acute pain setting because I’m using it for breakthrough pain where I’ve reached a decent 8 on my pain scale. This is also known as the ‘Fuck me that hurts. Hand over the drugs.” pain stage. On a scale of 1-10 this renders me incapable of doing much else than asking Mr Geek to rub my [insert body part] and clock watching for dosage times. With a decent TENS session and break through drugs, I can usually bring the pain down by 2 levels. This means I’m currently sat at “Not sleeping, but at least I’m not screaming.” level. Don’t look for pain scale facial expressions here – 9 & 10 get scrunchy faces & farmyard noises. That’s it. I’m a bloody zen master at breathing away pain facially.

This is all very irritating after having such a positive day yesterday. To help strengthen my upper body, I’ve been training (and I use that word as loosely as my joints) with a local wheelchair racing club for a few weeks. I’m fully aware that my lower half is past the point of no return. I have little feeling left in my feet & the lady areas are steadily going numb (That’s a whole other post) – and yes, I’ve flagged this up with more doctors than you can shake a referral at, but the regular limb detachment has been prioritised. So, I’m determined not to allow my arms the same option of defeat as my legs, and as such am building up the muscles to do the work of the crapped out tendons & ligaments.
Cue me being lifted into a paralympic style racing chair twice per week, strapped in and pretending that this doesn’t hurt in the slightest.
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The coach is lovely & works on the basis that we know our bodies, so you go to your own comfort level & adapt the chair, pushing style, & seating position to however your body works. As it turns out, mine needs to lean forward to take the pressure off my back & put less pressure on my shoulders, so we’re tweaking the club’s chair that they’re letting me use each session to get it right. For me, pushing down on a flat surface with no inclines or cambers, means that I can self propel. My lower spine still shifts every session, my SI pops as I get out, my elbows still give out if I get pushing wrong & my shoulders will not accept arms lifting up or out, but I’m finding my style. It’s slow, it’s slightly wonky, but physio isn’t meant to be easy.

Pros:
– I’m building muscle on my arms & core
– I’m outside twice a week
– It’s social
– I have a whole hour where I don’t need help
– feeling of freedom. Like running.
– Massive aerobic high
– Long term – possibly improving POTS

Cons
– Extra bruising from wheel guards
– Pulled shoulders from pushing too hard too soon
– Pulled elbows as biceps get tighter
– skin worn off on fingers (forgot EDS skin & friction doesn’t mix well. Cure: cohesive bandage wrapped over gloves)
– Getting cold outside (Then cramp!)

Ultimately, if it allows me to maintain where I am right now without any more spirals down, I’ll be happy. This is the first on land exercise that hasn’t injured me substantially more! And Mrs Physio will be super impressed at my efforts to get off my arse… or at least get my arse moving.

So here’s to my favourite two pain relievers right now: adapted exercise & TENS.

Here’s another table of possible settings with some handy explanations for use from NaturesGate

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Ehlers Danlos Syndrome (EDS) Awareness Month

Awareness comes in many forms. In the case of a rare genetic condition, this can be both positive & negative. Surely, I can hear you say, there’s no such thing as bad publicity. But when it comes to a diagnosis, there can be.

May is Ehlers Danlos Syndrome awareness month & as part of that, here’s my two penneth to add to some already outstanding posts. (Be warned, this is more the ramblings of an insomniac waiting for the next pain relief window!). It’s taken me a few nights to write this as there’s an awful lot to get through!

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Along with a number of other people, I’ve come up against that Rheumatologist who decides that he knows better than the specialist consultants. That one (generally older) doctor who sits back in their chair and regales you with tales of how certain diagnoses are “in fashion” and a private consultation will of course result in a diagnosis because you paid them. They make you doubt your own diagnosis even though you know your body best & they met you 10 minutes ago. At best, these doctors are breaking the hippocratic oath by following their own agenda instead of doing no harm, at worst they’re downright dangerous.

Even in support circles for EDS, there is a disturbing undercurrent of symptom competition – I’m much sicker than you, so you can’t complain. In doing this we don’t help ourselves. Support online is about being there for anyone on this unpleasant spectrum. And understand that we all have our personal pain scales – a 10 for me may be a 7 for you, or conversely, you may be unconscious by my 7.

My own experience of EDS differs from other people’s as we all experience symptoms on a spectrum. I have a diagnosis of EDS type 3 with classical (type 1) crossover because of my weird skin.

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My main daily issues are that my limbs refuse to stay attached to me. EDS itself is not degenerative. However, it appears so as each new dislocation or injury leaves more scar tissue, or joint damage, creating pain & disability. No one entirely understands us, and there is an awful lot of stories of our conditions taking a sudden nose dive after an illness or accident (mine included). During a flying visit from Mrs Gypsytree this weekend, my daft Sherlock said how she remembers coming over for her final goodbye evening whilst I was suffering with viral bronchitis (and coughing ribs out of place). It was shortly after she left for Ireland that I went waaay downhill & she’d wondered if she’d just left me to rest if all this wouldn’t have happened. Oh Sherlock, you don’t control my collagen or genetics. Although it is your fault that I have to argue with Easyjet on a termly basis to come and visit. Because even sticking me in a chair then moving 600 miles away doesn’t let you off the best friend hook.

Having been undiagnosed for over a decade since real chronic pain set in, I caused permanent nerve damage in my pelvis & back through following physio for “normal” people after 2 prolapsed discs, several more bulging discs at multiple levels, & dislocating my pelvis. I pushed through the pain not realising that actually I was making everything worse. Fast forward to now with me as a full time wheelchair user & my pelvis and hip sublux daily, my knees twist and both patella move freely, my ankles turn in and that’s just my lower half! Pain is a thing that just is. Stuff pops out. We put stuff back on. If we didn’t, I’d live in A&E. Why cause more X-rays when we can fix me like Lego?

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It’s not just the bottom half. Most of the time I use a powerchair, but I’m keen on using my lightweight manual around the house & at weekends to build up the strength in my arms. Just by doing this small amount of exercise means that my shoulders may stay where they belong more often! The flip side of propelling is shifting ribs – this morning was a good example of this. Eating breakfast, I realised I couldn’t breathe because of a horrible sharp pain in my sternum. Placing my hand on the outside of my ribcage & pushing, I felt (and heard) a clunk as the rib popped back in. Grim eh?

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Ah the shoulder knots. The hours that Mr Geek has spent digging his thumbs into those stubborn knots that just won’t bugger off… muscle knots do have a special name that slips my mind right now (edit: trigger points). But they are tiny bits of muscle that were tense then forgot to stop being tense and cling onto a bit of lactic acid and become a hard lump. When squeezed, my shoulders feel like they have rice in the muscles and like any muscle that are constantly tense, it aches & causes tension headaches. Again, exercise helps, over-exercise hinders. I’ve not found that fine line yet.

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A perfect example being today. It’s Saturday, the sun is shining, the tank is clean… I woke up knowing we’d planned to take the bikes down along the prom and cycle to the local pool. So double whammy of sunshine and floaty floaty pain relief. I managed the whole thing on minimal pain relief (and a lie in & nap in the morning), then we got home and after dinner BAM! I’m freezing cold & exhausted & my legs feel like I’d actually cycled instead of using Leonardo (my super awesome wheelchair electric bike). I messed up my pacing today, but it was utterly worth it. Check out that wonderful blue sky!

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A nod to my tiny babies in the gif above. We had no idea why my pregnancies were fraught with issues, from SPD to full dislocation, to my waters breaking at 35 weeks, then TinyPants at 32 weeks to the day. You’d think with an extra stretchy body, labour would be easy, but oooh no. 52 hours of making farmyard noises, then an emergency c-section because her massive head was stuck in my wonky pelvis! Then healing from a c-section. Which isn’t meant to go ‘stand up after 6 hours & stitches rip through you like cheesewire’. Also, ow.

It’s all forgotten now though…. ish.

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Oh yeah, and that epidural I screamed for? Didn’t entirely work. I take an awful lot of painkillers these days, & I’m remarkably coherent for someone who maintains sanity with morphine. This was illustrated when an ovarian cyst ruptured one of my ovaries. The surgeon conversation went a bit like this:

Me: arrgh!
Doc: But we’ve given you morphine, you shouldn’t be able to feel that.
Me: but I bloody well can! Are you sure that wasn’t just water?
Doc: No, you clearly can feel that. Weird…
Me: go away until you’re qualified Dougie
Doc: could someone call an anaesthetist?

I feel bad now for being mean, but at the time I was having my rapidly dissolving ovary poked with some force.  Of course they thought it was my appendix at the time, but we’re baffled that it took enough sedatives to chill out a sumo wrestler for me to stop squealing.

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As a general rule, I do try to be a nice person. But like anyone, I have a pain limit. Or rather I have particular pains that drive me more crazy than others. The one that is guaranteed to turn me into a howling banshee is TMJ pain. It’s the jaw joint & muscle. Sometimes it pops out, other times I clench my teeth without realising and the joint pain feels like the worst wisdom teeth pain. It makes all of my molars hurt & causes immense headaches that just sit around my temples and make me with PMT look like Julie Andrews.

It helps to try mindfulness and focus on relaxing the jaw and allowing the muscles to stop being is spasm. The flip side of this is looking less intellectual than Donald Trump.

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It’s not just the jaw that takes a battering. But the teeth & tongue. My teeth have always been crowded at the bottom, and they move on a monthly basis, but I’ve learnt to smile in ways that hide them.
My tongue is particularly hypermobile  (I know fnar fnar), but actually what this means is I can touch my nose with my own tongue (known as the Gorlins sign), but also lose control of it regularly and bite it. I have to think when I chew, not talk!

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My sleep patterns suck. I’m in bed early evening without fail, but blog and read and Facebook and tweet as vwhilst my body is shot, my brain is having a party!
Who knows where these weird sleeping patterns come from, but it’s possible that other linked issues such as POTS or general dysautonomia play a part here.
The bags under my eyes play witness to the fact that I’m unrested!

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And after all that self indulgent whinging about how much EDS sucks, you know what? It’s not all that bad. Most (not all, but remember this is a spectrum), with the right support from a knowledgeable team, and ongoing support from Occupational Therapy and Physiotherapists can live an adjusted but still fun life. Mobility & living aids are just that, they help make life easier and there’s no shame in using them if and when they help. Leonardo (the wheelchair cycle) may be great for getting me out into the open, but he’s also improved my state of mind tenfold.

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I can’t praise my OTs enough. Out of everyone, they’ve looked for solutions & told me that they’d kick my arse if I thought about giving up. We’ve both agreed that my pain levels sky rocket whilst I’m working & level out during the holidays. We’ve also agreed to say bollocks to it and do everything in our power to keep me working. If only for Mr Geek’s sanity. If I was at home, I would drive him up the wall!

They think of him too. After all, he’s the one who gets me up, helps me dress, gets the kids ready, cooks us food, and holds down a senior code genius job at the same time. This week my lovely OT ran through the standard checks with him that he’s ok & are we sure we don’t want a carer. I remain in awe of Jo Southall, a fellow EDSer and trainee OT. Talk about using what you know!

So there it is. A few snippets of my own experience of EDS. Life isn’t over when your joints say it is. There are ways to reduce the degree to which you are disabled, not by changing your body, but by adapting your environment and taking care of your head as well as the strange stretchy housing that your head lives in.

So from me. If you know someone with EDS, give them a gentle hug from me 😉

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I’m not an #Ableist but…

It’s time I quite literally wheeled Stella out again. The world needs a replacement for the blunt but very funny woman she was. This is the woman who got drunk, fell out of her chair & broke her wrist. No regrets aside from spilling her wine.

Anyway, this evening Facebook and I clashed. Ok, not actually Facebook,  but someone posting on it. I usually just roll my eyes and move on, but sometimes I forget that this is the internet and try to explain to people why their words might be misconstrued as offensive, or why in fact they are being a dickhead. In fact, to save you reading further: TLDR; don’t be a dickhead.

However, for the more literary…

Just a quick reminder of standards for talking to, about, or around those with disabilities  (and like ninjas, you won’t always be aware of our presence):

– The “at least you’re not that person” style of motivation speech is not well received when done in front of that person. That speech is best described as a clusterfuck.

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– we are wheelchair users. Not wheelchair bound. Not in public anyway… don’t Google it. Unless you’re into that kind of thing.

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– on a similar note, I can call me a cripple as can my disabled friends. It’s our word.  Only a ginger can call another ginger ginger?

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– if I call you out for being ableist and you are not disabled, you don’t get to tell me that all disabled people would agree with you. Because one just didn’t. That’s not activism, that’s maths. Let’s be honest, If I call you out on it, I’m probably going to be nicer about it than half of Twitter. I won’t even c bomb you the first time 😉

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Now watch Stella. Go on. Off you go.