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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All PGCE Courses should include saying the word ‘penis’ in public.

And it’s official. I’ve made it through my first term back in the state sector and ya boo sucks to you Hogwarts, I’ve not only made the last 8 weeks alive, but emotionally in tact! Today’s teaching was sponsored by a litre bottle of Kick (cheap own brand Redbull) which counteracted the minimal sleep and made me a VERY enthusiastic teacher, with only minor chest pains.

I’ve discovered a number of things so far:

I don’t speak teenage girl anymore. The speed at which deliver detailed information about their incestuous friendship groups indicates that their brains must be functioning at breakneck speed. This is usually reflected in their essays which contain volumes upon volumes of words. Words that eventually lead to a point which may or may not be connected to the original question. I may mock here, but I clearly remember being in year 10 & 11 and all the hysterics and heartbreaks that go with it. It’s not a great time for those who feel the need to be very small adults before they’ve learnt to appreciate being outrageous college kids. The TV show The Inbetweeners has unwittingly done a huge favour to a generation that suddenly saw what they could do between child and adult stages. They made a levels attractive in a way no educator or government ever could. And. AND they coined the phrases ‘clunge’ and ‘buswanker’. Pure bottled genius.

I know my shit. You’d hope so really, but there are still times that I wonder if I’m just spouting a load of tosh. Turns out, I can pick up two new programming languages and teach them without a nervous breakdown. Python & Pascal, I salute you for being decent languages which support the syllabus and have a place in industry (if only because Pascal is derived from C++ and as such borrows a fair amount of syntax). Not only do I know my programming, but I am an algorithm goddess (after a glass of wine, or too much redbull). Today’s end of half term brain teaser was an algorithm which included the need for iteration and selection which described how to recharge Mrs B. This involved a process of eating pizza and drinking beer. Once beer percentage was less than 0.1%, Mrs B must be pronounced asleep. A few of them (sixth form! Not school age! Theirs was much more age appropriate!) traced the algorithm and shouted from across the room “Miss, is this your plan tonight? You’re going to eat pizza and drink beer ’til you fall asleep??…. Lad!”. Bless, yes that is my plan (actually, it’s fried chicken and beer), but it also includes knitting and TV. Not quite the lad.

State school isn’t scary! Much to the contrary of the horror stories told at Hogwarts, state school is a NICE place to work. With supportive teams that want to make education enjoyable. It’s not a walk in the park, and there are classes that I walk out of wondering if evolution really is right. But, on the whole as long as you’re ok with standing your ground (without losing your temper) and are not disturbed by the teenage boy sense of humour, then combined with a few years experience and a diary that holds details of everything you need to achieve each day, it’s frankly the best job ever.

A note on teenage boy humour – look in the mirror. Now say penis, willy, porn, boobies and breasts and the top of your voice. Red in the face? You’re doomed. All PGCEs should include a full unit (hehe) on saying and hearing the word penis without reaction. Differentiation could apply here – top achieves could also show no reaction to vajazzle, pussy wagon and shclong alongside descriptions of their latest piercings.

Just a thought.

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Child: a noise with dirt on it

As we get stuck into the half term holiday with a vengeance, I have noticed two things:

1. Stroppy emails from work can wait. People will shortly be getting the sharp end of my tongue.

2. My children create concentric circles of mess. EVERYWHERE THEY GO.

It’s not even 9.30am. We were woken up to the dilcid tones of TinyPants asking if we were awake yet as she hasn’t got the squash out but is dying of thirst. Then comes BeanPole, who for the test of this post will be referred to as StroppyKnickers for she has adopted the general mood level of the average teenager. It is due to this ungrateful brattish behaviour that we have pulled the plug on the medieval day today, for I am not get feeding the ‘I want’ attitude. (She and I may well fall out this week)

So today, they can go to the tennis courts and wear themselves out. And this week I’m going to find them something to do that reminds them that they really should be grateful for the lifestyle we have. They may be only 7 & 8, but better to realise it early than become horrible teenagers.

Wish me luck!

(And any suggestions on activities are welcome!)

Horrible Homework and the Sunday Night Panic

Picture the conversation last weekend at the start if half term:

Me: “Do you have any homework?”
Tiny Pants & Bean Pole “Nooooooo”
Me: “really??”
Cue protests at my disbelief and slurs on my trust of their commitment to education.

Now fast forward to an hour ago as I ready myself for my own return to work and their return to school…. “But our homework has to be in tomorrow!!!”…. This is the homework which magically appeared today and is suddenly MY fault for not letting them do it because we were out swimming, feeding ducks and going to the cinema.

So here we are with two children sitting at the dining table in homework hell. With me and the long suffering husband taking it in turns to refuse snacks, redirect the wandering one back to the table, and mention to the beanpole that she isn’t actually going to die from doing a bit of maths.

So what joys of education do we have this evening?

Well, tiny pants is writing a book report and seems quite enthused. We have one of her favourite poetry books out and I’ve given her a list of questions that she has to answer to make a good report. She seems to be following the instructions and aside from the occasional “how do you spell…” she’s got her head down.

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The bean pole is a whole other story. She’s on maths and we have some ‘instructional issues’. As in she has an inability to actually follow any. She’s been given a page of shopping receipts which she is using for long addition (kudos to her teacher for implementing some constructivist learning techniques, but who was the nail varnish for Mr C?!). The long suffering husband is making an attempt to guide her through the process and is getting increasingly flustered by her lack of willing participation and insistence on telling him that her way is the right way.

I probably didn’t help by taking a photo of her enthusiasm for homework.

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So, how do we get past this homework block?

My initial thoughts were based on shouting and other military drills, but actually I think the long suffering husband has got it right. He’s letting her do it her way (the teacher in me is screaming that it’s not the right way, but it is her way and I have to let her do it the way she’s being taught). He’s just sitting quietly next to them reading a magazine and offering occasional help.

This is why I’m teaching other people’s children and not my own. I have the patience of bloody saints when it comes to other people’s moody teenagers, but cannot fathom why my own offspring just won’t sit down an learn.

AARRGH!