Don’t Touch My Wheelchair

There’s been a lot going on recently and within those busy moments there are flashes of white hot fight or flight temper. As a rule, the flash remains in my head & I either bury it, or explain calmly after, but all flashes have a common theme: don’t touch my chair.

For ease of reading:
I have Ehlers-Danlos Syndrome; a genetic condition which affects connective tissues throughout my body making them stretchier than they should be (this includes tendons, ligaments, skin, muscle, internal organs). I dislocate or sublux (partially dislocate) daily and it hurts. EDS comes with the extra fun of IBS (irritable bowel), POTS (Postural Orthostatic Tachycardia), and for me, dysphagia (difficulty swallowing). Because of the pain, hip & pelvis subluxations, and fainting I use a wheelchair pretty much full time aside from trips to the loo upstairs where I use crutches to drag myself the full exciting 5m.

So, my chair is my mobility, it’s my pain relief, it’s my route to remaining conscious! So why the anger? May I give this in a few formal requests? (I’m going to anyway, that was more to allow for a personified narrative – I could almost pass my SATS with that paragraph…)

Don’t push my chair without asking
Sam, my ever understanding lady summed this up in words even the 7 year old demanding to push me around like an oversized doll understood.
“You don’t push someone’s wheelchair unless they ask you to. You wouldn’t let someone puck you up without asking would you? It’s just rude.”
I make a habit of having my handles on the chair tucked away because I hate it.

Firstly, it makes me feel very vulnerable when someone physically moves me either unexpectedly or against my will.
Secondly, I generally have my hands on the rims & if you move me forwards without warning, I may still be gripping and you’ll have a dislocated shoulder, elbow, or wrist on your conscience.

Mr Geek forgot himself today and did just this. He whizzed me up a ramp onto the train without warning & faced a very stern don’t touch my bloody chair conversation. Mainly because I was tired, in pain, and having been in ultra-alert mummy in London mode all day couldn’t tell who was pushing and panicked.

Don’t  pin my pain on the aid that relieves it
My pain management team appear to be at a professional crossroads. If they were married you would probably suggest seeing a counsellor. Instead, they played a game of professional ping pong with my appointment which as a professional, I found deeply unsettling.
One of the ladies is a pain specialist. She is quiet, encourages my progress (albeit slow), advocates pacing and patience.  The other is a lead physio who is very much the opposite. She is an advocate of movement, and pushing through limits, and overcoming mental barriers. Personally, I find her overbearing and generally cannot get a word in edgeways.

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When I saw them this week I happened to be circling the higher eschalons of the pain scale. I find it difficult to articulate my needs when I’m breathing through it. I’d managed to explain jy fears about loss of sensation (boiling water on the foot) which was taken seriously, and lack of sexual function which was dealt with in true British fashion.

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Whilst demonstrating a move to help me open up my pelvis & lower back, she noticed that I was uncomfortable in the chair. And here it came:
We must get you out of that chair. Being sat in that is what is making your back hurt!” Now, to an extent I do agree. Being sat still watching a loud person wave their legs in the air for 45 mins makes your joints seize up. Anatomically, the seated position does put pressure on your lower spine. So I asked her how we would work on that.
What’s about standing up at work?”
We’re going with a no there; I’ve already fainted in my classroom twice this term despite being sat in my wheelchair  and that’s scary for both me and the kids. In fact, it’s what prompted me to get the reclining back for the powerchair.
Can’t you just walk around at home?”
I’d love to! It’s my ultimate goal to abandon the chair in the house, but standing feels like there’s glass in my hips & walking with crutches not only causes pain (and tears), but runs the very real risk of a fall as I can’t feel my feet & have to really focus on where I’m putting my legs.
OK then, but we need you to open up that area, so lying down flat as much as possible with lots of stretching”
Again, unlikely at work (Just picture that classroom scene!), but doable at home… but stretch as far as possible?!
Earlier, she’d been quite offended when I told them that my Stanmore referral was rejected due to waiting lists & I felt left in limbo. She scribbled  furiously whilst telling me sharply that she dealt with plenty of Hypermobility & didn’t need London telling us what to do (🚨🔔AWOOOGA! Alarm Bells!🔔🚨).

This all sounds like a cop out, but I know my body & that pain in my hips & back isn’t from the chair (unless it can time travel back to 2004 when my 1st disc went). I also know that pain is not gain with EDS, and when I “push through”, I end up damaging something.  I do push myself physically by hauling my arse to wheelchair racing & swimming each week. I use the manual chair when I’m not at work, self propelling to the point of exhaustion & audibly clicking shoulders.

I’m doing my best, but sitting allows me to function. The chair damn well stays. I will not be confined to bed & stop working so I can point my toes again.

If at all possible, I’d like to enter the building the same way as everyone else, not via an extra 1/4 mile walk and via the bins.

Part of our lovely day out in London was dinner (we had hoped it would be celebratory, but we won’t hear about vague thing we cant talk about yet until tomorrow or Monday). As a special treat, we’d booked a table at Marco Pierre White’s Italian restaurant on the South Bank. I was beside myself with excitement as I love some of the TV stuff he does.
The entrance was beautiful with just 8 minor issues – all of them steps. The solution was to walk to the back of the hotel where there is a ramp.

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And bins. And no clue on how to get in.

Once in, it was just bliss! The staff were helpful & made every effort to accommodate us. And the food. Heaven! I utterly second MP’S recommendation of the bolognaise pizza!

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If I need help, look where you’re going!
I started writing this blog post about 12.30 am & it’s now 3.15am. Why aren’t I asleep?! Well, earlier Mr Geek helped me down a curb by easing me down backwards, misjudged the height, didn’t see the hold in the road & the chair dropped down the height of the curb plus hole.

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As my wheel touched down, my left hip popped out (unusual, it’s usually my right side) & I yelped. And swore. Then used the chair to wiggle it back in & had a little cry. Painkillers were duly administered & I assured poor Mr Geek that it really wasn’t his fault. Yes, he’s a bit clumsy & cakhanded, but London appears to have not mastered the art of the drop curb yet…

… and where they have included a drop curb, Southwark  Council has a funny idea of the best place to situate recycling bins.

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12 hours and 3 doses of dihydrocodeine  & oramorph later and I still have knives in my hip and sleep arrives in 10 minute naps until the muscles relax & go back into spasm & wake me up again.

Other quick & easy ones.
Please don’t move my chair out of reach if I’m on the sofa. Ffs.

No you can’t ‘have a go in it’

Please don’t suggest adaptations, then get huffy when I say no. I know you’re trying to help, but I’ve got it set up my way and tyres “just” 1/4 inch thicker will rub against my skin.

Also, don’t touch my chair.

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That Time I decided not to leave the house again (or Accessible My Arse)

I had a training course to attend today for work. I’d been looking forward to this as it meant going back to school to do coding. Heaven.

The plan was that Mr Geek would take the day off work and come with me as my assistant in case I had difficulty. (We envisioned this as me not being able to get on a bus, or getting lost, or getting faint and needing help).

What I forgot is that today is Thursday. And Thursdays don’t like me.

We left the house at 7.15am to drive the 30 minute journey to Hassocks station as it is more accessible than our local one which has stairs all over. 30 minutes… nope. 60 minutes. I’m now running late which doesn’t work for me at the best of times. But once we were on the train it would be fine!

Hasocks station ticket guy:  have you booked assistance?  … no, despite using the route planners to highlight we needed a stepless journey, there was no indication that we needed to warn people in advance that we were travelling. Someone didn’t learn from her trip to Ireland that I can’t just be spontaneous now. I was already a bit sensitive about being late, so wasn’t bowled over by being singled out as making his day more difficult. But they got the ramp out and I wheeled into a middle section of the carriage.

Now, a bit worried that we’d miss registration, I emailed venue to let them know we’d be late. All would be fine.

As we pulled up at Haywards Heath to change for our London train, Mr Geek had to call the guard for me (how do you do that from inside the train on your own? ). For future solo journeys, may I suggest a flag on a stick?

Getting off the train was fine, but up onto the Gatwick Express was a different thing entirely. I got stuck on the ramp going up as the train was much higher. Mr Geek had to push me up. This is the kind of thing having a power chair was meant to avoid!

Gatwick express actually has bus style seats for wheelchairs so you’re not put in with the bikes which is nice, but unless you have a slimline chair, good luck getting through the doors!

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Trying to get off at Victoria was verging on hilarious. To get out, you need to tackle a right hand turn the width of the chair, then a narrow passage and doorway out. Now, when you have a turning circle of a small country and the spacial awareness of a bull in a china shop, that’s not a fun task. After a three million point turn and getting very flustered I emerged from the train. Now even later. Bugger.

Step 4 of 5 was to get a London Bus to Covent Garden. The No 24 London Bus had an automatic ramp that just popped out which was great because there was no fuss getting on! I have yet to work out how you get onto a bus and back into the official space whilst people fuss around you and before the bus pulls away. I ended up facing forwards & figured that if I get thrown forwards, I at least have a soft thing to smack into 😉

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(Note that time… we left the house at 7.15, my course started at 10am. Lesson learnt here is that travelling by chair requires at very least 50% extra time for getting stuck, people faffing with ramps, and wheelchair accessible trains with a tiny right turn that touched the wheels of my chair on both sides – no hope of you have a self propelled manual chair).

By this point, being jostled about on trains and busses is causing enough pain to make me feel sick. Handbag full of drugs at the ready!

I’m late for my course, I’m in pain & I’m not wholly sure how to get my chair off of the bus. It turns out that rush “hour” in London ought to be referred to Trading Standards. Our top speed was slower than my chair! It took us 45 minutes to do 2 1/2 miles!

So 4 hours to get here. And now it’s raining. Ffs.

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Final step was a 10 minute “walk” which involved me grumbling about Mr Geek having told me that the weather was ‘mild’. I was cold, wet, and eye level to every cigarette in London. Btw – umbrellas are a wonderful invention,  but if you put them in front of your face, the angry woman in the wheelchair you’re walking into is going to tut at you. And flinch because that thing is pointy!

Having emailed a month in advance to double check that the venue was accessible, my Thursday just continued. The training itself was on the 1st floor (woop! Lift) & we arrived just in time for coffee. The one and only accessible loo was downstairs, so off I trundled. Then realised that the lovely wide doored accessible loo was behind two narrow wooden doors. No prizes for guessing who smacked her hand on the doorframe.

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Just before lunch, the trainer called a member of staff to explain how to get up to lunch. She arrived and explained that the dining hall was up on the 2nd floor but there were stairs, so could I leave the chair at the bottom and walk up? …. That’s sort of not how the wheelchair thing works? Ok, yes if I’d had my crutches I could’ve gone a few metres, but not up stairs & not in my current state. We gave up and went out to the cafes along the road.

Back down in the lift with more attempts at reversing out without hitting the stairs that were placed conveniently at the door of the lift. It was 1pm and I was ready for bed (and still really cold).

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Whilst I got stuck in to some afternoon object instantiation with what little brain power I had left, Mr Geek went out to the shops in search of something to keep me warm and dry and returned with a lovely woolen shawl & an emergency poncho. No there are no photos, you’ll just have to take my word for it that I looked hot. Or at least slightly less cold.

Getting on the train back at Victoria was  much easier and we were helped into the wheelchair bay where we found this:

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Super helpful! Especially as when it fell over a lovely lady chucked it out of her way towards my knees. (Can you see the lovely shawl? It really is lovely ). So still absolutely freezing, exhausted, and more and more palpitations, I vented to the world on a blog post!

What have we learnt from this?

Public transport is terrifying

London is moreso (people / cars/ noise / lack of drop kerbs )

People kicking my wheels or tip wheels drives me to a state of irritation that mirrors Dr Jekyll & Mr Hyde

I’m basically useless without Mr Geek

Mr Geek is deathly accurate with an umbrella if you get too close to me

I can push myself to keep going for hours longer than I think is my limit.

I will pay for this tomorrow.

One day I’d like to write a positive blog on disability and access and generally falling apart, because even I’m bored of my incessant whining. That day will not be today.

London Baby!

I’ve not blogged about today’s appointment yet in case I jinxed it. But today was our big trip to London. We combined my appointment at the Hypermobility Clinic at St John & St Elizabeth Hospital with a birthday trip to The Natural History Museum for Beanpole’s 11th birthday.

11. How is she 11 already?!

Cue 5am start (or 3am for the kids who woke up early and snuck downstairs), then heading off and picking up Beanpole’s best friend for 6.30. Then off we drove to central London.

Having been raised on the Chalk, I’m not wholly comfortable being in London.  The South Downs are in my bones and just like the Terry Pratchett books, leaving them behind feels very odd. (Although thankfully I’m in Sven our Saab, not on the back of a broomstick).

London is busy, fast paced and doesn’t have nearly enough green. On the top of the Downs you can sit on a hill on your own and feel like you’re watching the whole world; in London, you’re surrounded by thousands of people and yet feel completely alone. I’d rather be in the company of badgers. (Mental note: must find off road chair)

I digress.

Whilst I had been given an EDS diagnoses from our GP Registrar, the surgery (and the world plus his wife)still wanted an official diagnosis from a Specialist. This is an appointment that’s been ‘on referral’ with our local hospital for coming up to 3 months. Every GP appointment recently has ended with “you need to talk to the specialist about this”. Eventually, we got fed up and phoned Mr Geek’s private health insurance to ask if they would help. Indeed they would, and an appointment was made 3 days later (today) with the Hypermobility Unit in London… I’m yet to hear from our local hospital.

I was so scared, I felt sick last night.

What if it is all in my head?
What if they don’t know either?
What if they think it’s all in my head?

We arrived at 9am and Mr Geek took the girls off for breakfast. And in I went…

We talked through everything that’s crapped out on my body since year dot. Discussed my attempts at acute physio and that the hospital now didn’t want to see me because it’s too complex. Collectively wondered why people hadnt picked up on this until I completely fell apart having been prescibed mega painkillers for the best part of a decade. She tested each of my joints (aside from my braced knee as it’s still purple) and concluded that only my right Big toe is not hypermobile.

“You definitely have joint hypermobility”

…… I’m not mad…..

“And from the rest of these symptoms,  I can conclusively diagnose Ehlers-Danlos Type 3, although I’d like to refer you for genetic tests to be sure of the type.”

…… fin.

It was all of a bit of blur from there because years of being fed painkillers by my GP and told to bugger off released themselves and I cried. I don’t do crying.

I know we talked about management options and she referred me to a heart specialist and stomach specialist and to Physio and psychology for pain management because it’s all written down. But the relief was immense. I live in hope that my GP might quit talking to me like I’m just after drugs.

After all this it was museum time! Mr Geek met me with the strangest non-fodmap breakfast in a bag. But it was so yummy! (I paid for this with horrid stomach cramps later)

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It’s been years since we visited the Natural History Museum and it seems to have got even bigger. The kids decided to throw me completely by having a full on discussion about whether because the giant land sloth had a massive pelvis, whether it’s penis was in proportion. Welcome to the land of age 11. 

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You can’t shock the teacher that’s taught sex ed kids… Human body area anyone? Want to talk about willies? Let’s go look at a 2ft sperm cell.

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Children 0 – Hippygeek 1

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As ever, the dinosaurs were awesome. This bit never changes and yet it’s just as amazing every time. Beanpole is obsessed with dinosaurs in true Aspergic style. They are her lifetime love and she is a walking dinosaur dictionary.  There’s a phrase about pigs and poo that’s very apt here.

We also discovered the kids “touch everything & press buttons” area downstairs and Beanpole found the EDS game 😉

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And I found a example of what I should look like. The head bone’s connected to the. .. oh wait, is it still connected?

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Finally, with all spoons used & adrenalin from the morning drained away, the girls were given 15 minutes in the gift shop before we headed out of dinner. I even found myself an appropriate souvenir for the day. And in my favourite colour too!

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Cue using the drive home for blogging to keep myself awake and my mind off not bringing my tens machine!

Beanpole, TinyPants and friend have had a spectacular day of science, we’ve had a lovely day too, and that piece of paper from a leading consult in EDS ends any shred of doubt.

Today was pretty fucking awesome actually.

-20 spoons, but I just don’t give a flying rats testicle.

 

Gadget Girls @TheGadgetShow

I’ve been meaning to write something about taking the girls up to The Gadget Show Live in London all week, but it’s taken me a week to gather my thoughts (and photos).

As the blog name suggests, I am a paradox in technology terms. Whilst I delight in technology and all things geeky, I find urban life traumatic. If I can’t get to the middle of nowhere within a 10 minute drive, I’m uncomfortable. Maybe not so much of a paradox then. Its not the tech that freaks me out, it’s people!

With this in mind it’s not surprising that London holds very little charm for me with it’s millions of people, bus fumes and general grime. A city chick I am not.

Even less so after experiencing the underground with two small children. We queued like normal reasonable people, waiting for the correct train before moving towards the door. LSH and beanpole squeezed on and promptly dissapeared into the crowds somewhere along the train. I tried to follow with TinyPants. A 7 year old child who’s slight build still has her in age 5 clothing. We held each other’s hand tightly as I allowed her through the train door first to watch her be promptly elbowed in the head by a woman barging on and for me to be pushed out of the way of other people jamming themselves into the train. At this point the doors began to close with me still on the platform, and I had the choice of letting go of my small child or dragging her back to me through a closing train door. I chose the latter. It was against everything I know about train safety, but it was that or lose her on a train. Think of the therapy. I can’t think about the ‘or worse’ scenarios.

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So, it wasn’t a great start. I had previously been ambivalent about London, but that experience cemented all that I dislike about people living there. When it becomes acceptable to put a child at risk to make your journey few minutes shorter, something has gone wrong. I was ready to go home at that point.

Thankfully we didn’t.

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What we did instead was to iniate our girls into the world of geeky stuff.

We were greeted by a diver showing off just how waterproof the latest Sony phones are (felt totally wrong, but he was able to take photos of people from inside tank!!)

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After that we discovered the toy zone. We could’ve spent ages there but it was age restricted, so thank goodness for children!! LSH and TinyPants were rather enamoured with the AppPen (guess what Santa has on his list!).

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BeanPole went for the girly option of trying out the Nerf bows. She’s been after one for a while and this confirmed the decision. (I won’t mention the fits of giggles when the boy next to her promptly shot a random child in the head from a good 40ft away)

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Never to be out done, TinyPants headed for the biggest Nerf gun in the room (seriously, this thing was the same size as her) only to have it whisked away from in front of her and handed to a boy. *cue feminist rant from mummy as the girls had already been told by a stsff member that the Nerfs were for boys*

Instead, she took pot shots at the target (and said member of staff) with a smaller version.

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Then onwards to proper robotics where LSH and the girls got to have a game of Robot Wars.  Nerdtastic!

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Next was Playstation. I’m a PC gamer. It’s in my dna, but this guy almost convinced me to get one. He had the girls entranced (the dinosaurs helped). That man should get one hell of a bonus for making every single child feel like he was there just to show them the game. Kudos young man.

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Of course, there was the obligatory Minecraft photos.

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And an interesting discovery of the GameStick. Probably not the first generation, but when we replace the Wii for the kids, that it way way up there on my go to list.

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Microsoft was a total winner with us. LSH got chatting to the techies about having got one exam away from his MCSE and the various pathways that could lead from this whilst dribbling over tge Surface 2 Pros. The girls got creative with paintbrushes and touch screens running Windows 8 paint. Seriously, nearly 45 minutes of peace was gotten from those brushes. And no mess!!

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They even got to email their artwork home.

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Meanwhile, I sat and watched a man use the Surface 2 to paint a picture of Alan Turing and promptly shocked him by guessing who it was. I explained it wasn’t that impressive as I’m a computer science teacher and really ought to know who it is! He congratulated me on being a teacher of computing, then doubley so because I’m a woman.  Errr… a little sexist no? I think it was meant as a compliment. 

We finished off the day watching a demo of bmx and skateboarding with wearable cameras, after which the girls got to have a go on the boards. In a half pipe. Oh yeah.

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Thankfully the train back was nowhere near as traumatic and we got home tired, but with many ideas of cool stuff we want to try.

Even so, I’m much happier being back on the chalk. London is not for me. Will we go again? Probably. Next time we’ll get the bus.