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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Life In A Cage

I had a bit of a strop today. Not uncalled for, but stressing over something I can’t do a great deal about with immediate effect.

Yesterday, the plan had been to grab the bikes and head out for the day. Mr Geek decided that buying the new roof rack for the bikes was on the cards as the old one takes an age to put on & isn’t entirely stable. He would only be an hour getting that and lunch, so I supervised the kids getting their swimming stuff together & cracked on with the last of my marking. An hour later he returned triumphant & we had lunch… then waited. After 2 hours, I was going stir crazy. The kids had returned to their room or were whizzing around the garden on their bikes. And I paced between the kitchen & conservatory like a caged animal.

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Why? Because having busted a gut getting us all ready, I have to wait for Mr Geek before I can leave the house. I can’t get out the back door at all & the front door requires an able bodied person to put down our portable ramps. So I’m stuck. In the end I slouched on the sofa & read my book, then had a nap as I’d worn myself out being pissed off at not being able to reach the good weather aside from leaning precariously out of the door to just breathe in the air. I’ve tasted a bit of freedom now & I’m not keen to go back inside my box.

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Today took a similar turn, with me being perfectly happy to visit with in laws (I really enjoy their company – how many people get to say that eh?), but plan A was scrapped so we came up with plan B of visiting, then some family outside time to de-stress everyone. Having explained that Beanpole was stressing about the looming SATS that start tomorrow & I’m stressing about expectations to make the kids revise; This combined with explaining that sitting still in my chair is causing thunderous pain, but propelling allows me to engage my muscles and fight it off for a bit. So we gathered bits from the shop on the way over & sat still in the sun for over 2 1/2 hours. The net result of this was no time for family outside time as I couldn’t pluck an accessible alternative out of thin air, a bastard of a backache, and bright red shoulders (guess who can’t feel the burn over the nerve pain. Silver linings…). Eventually, instead of brooding I said something. What was heard was “I’m angry because I didn’t do what I wanted today”. I didn’t explain it properly & I apologised for being grumpy. Then took that feeling, screwed it up tightly and shoved it in a mental box. Except that box is full & wont close so I wrote a blog about it to remove it all from my head & keep it sealed up tight. I’m angry because my voice wasn’t heard, I’m angry because I have no physical freedom & feel like I have to doff my cap because otherwise I’m fucked.

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That in itself makes me feel even more trapped. In that way it’s a double whammy because not only do I have to wait until someone else is ready to help me, I have to be constantly grateful and keep my temper. Most normal adults have the option of walking away to cool off, or frankly, walking. How exactly am I meant to do that when I reach the front door & face the prospect of faceplanting if even attempt to get my wheels over the threshold?!

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So here I am, working through it all in my head and realising that I’m not actually angry with Mr Geek; I’m living for the weekends when life is about my important people & when I spend most of that time waiting for them to want to engage with me, I feel hurt. They are my important people. I came second to Pintrest & a bike rack (TinyPants, in her defense, recognised the caged animal thing & read me Grimms fairytales even though she proclaims to hate reading, but she knows I love to hear her read). I’m reacting like anything that once roamed & now has a cage put around them – I’m on constant fight or flight on the off chance that I see an escape. This combined with pain means no sleep. No sleep means bad temper & more pain. And so it continues.
I’m resentful that I now have to sit in that bastard bloody powerchair and crush my spine & pelvis for another week to smile & cajole like a tortured CBeebies presenter, kids who now outrightly ask why I can’t just do their coursework for them, or threaten to bring parents in when I don’t grade them high enough (I do love my job – this half term is always particularly tough. This year moreso than others). However, I’d rather be there to collect my stressed out offspring & feed her ice-cream until she forgets about the exams.

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As with most things, I don’t just offer problems, I find solutions, and here’s my first offering: A customised Google Map for those of us who need a bit more info on places we could achievably get to or get around. I’ve started adding the places we’re visiting & maybe you’d like to contribute? As a crowdsource, we could create an awesome free resource! Just drop me a twitter message @WorthingWeb with your email or leave me a message below.

My Accessible Google Map

The next has got to be rampage. As in ramps, not going on a rampage. Without access to anything outside the house without help, a rampage is going to be quite ineffectual. But if I continue to feel trapped inside the house, there’s going to be an issue. More than just me grinding my teeth at night and sleeping even less than usual. Either I’ll get pissed off and start making my own solutions like bum shuffling over the threshold then dragging the chair after me, or I will mount a protest by refusing to go inside. The latter is pretty much what my old cat did. The fact that I’m considering taking protest cues from a deranged and not mildly psychopathic ball of fur, teeth, & claws ought to be saying something.

I’m asked a lot at various appointments about my physical symptoms & Mr Geek is more often than not asked how he’s coping. Only very occasionally do professionals ask with any actual interest how my head is. God forbid, I might tell someone the truth one day and tell them that I was a real tiger once, but now I just pace back and forth between the corners of my strange cages.

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Stop Being Sick, You’re Making People Stressed

I feel like a bloody salmon at the minute. As soon as I get my shit back together and start swimming upstream, I get to the top to either fall back down again or be eaten by an opportunistic bear. I am using everything in my arsenal to hold it together mentally and not have a proper poor me pity party over losing my ability to get out of bed or make my own cup of tea. I’m not one for self pity, or pity of any kind. I find it boring, especially when it’s me that’s doing it.

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Today we travelled back from Ireland – the sum total of 7 hours in planes & automobiles (no trains) and arrived home at 9pm spoonless and close to vomiting from pain.

Some months ago at my PIP interview, the guy who interviewed me turned solemly to Mr Geek and said “Watch her. She’ll put on a brave face then all of a sudden will hit rock bottom. Just watch her mental health.”. We shrugged it off.

Since being diagnosed, I have not mourned the loss of my physical capabilities outwardly. I’ve internalised it and it’s manifested in me not sleeping and I’ve subsequently grinched about it on here, but I’ve just got on with life because that’s what you do. I’ve not given up work, I’ve attempted to continue with life as normal, I’ve played down my pain levels whilst gently introducing everyone else to the idea that they need to live with a disabled person.

Occasionally, I am snappy with Mr Geek because he forgets that I can’t do something, or I ask him to do things for me to maintain this quality of “nothing is wrong” life. He is a good man & I lean on him. If anything, I snap at him to make sure the things that wind up other people in the house are done, or something for the kids. The things I personally want to do come much lower down the list, unless it’s pain related.

This evening, after yet another wonderful experience with people who claim to be accessible, I was not in the mood for a “you’re doing it wrong” conversation.

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But I was treated to one anyway.

I was informed by my Dad that over the past 9 months of my getting ill, Mr Geek’s stress levels haven’t just doubled, or quadrupled, but multiplied infinitely and that that was because of me. He’d “noticed” that I was overly demanding of Mr Geek. The exact phrase used was “I couldn’t put up with what he deals with”.

I explained that it’s not easy to lose your independence & yes I know I snap sometimes, but it’s frustrating when you cant do things you once could. I was cut short and told “that’s not his problem, that’s your problem to deal with”. This was followed by the offer of help from him & my mum to sort out caring for me (having already said, under no circumstances do I want them doing that –  I’d prefer to have an outside carer. ).

Now I know he meant well & has Mr Geek’s state of mind at heart, but that little thread of sanity I’d retained just snapped.

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So let’s all really say what we’re thinking shall we? Whilst we’re goibg for subtlety. You’re meant to get ill, go to the hospital and get treatment then get well again or die. Well, I’m not doing the latter so instead at best I’ve got another good 30 years of being in daily pain with more and more joints popping out and various organs prolapsing, & at worst add in my current GI & dysautonomia issues getting worse. That’s my whole lifetime again without sufficient drugs to mask the various lightening bolts and spasms, or eye-splitting headaches, then the possibility of tubes for food going and and out.

I try not to look at that big picture, because down that road lies maddness and a one way ticket to Switzerland.
This is much more manageable taken one day at a time with future plans being fuzzy in case they need to change. Taking small steps also allows for an inkling of hope that this might get better. One bad day can’t go on forever, or at least that’s my positive hippy dippy thinking.

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I’m aware that this is just another one of those cycles that you go through after becoming ill, but having been raised to not have a healthy outlet for my anger, I get to sweep this under the carpet and trip over the lump.I know that it’s actually OK to rage over the injustice of losing the life that you imagined you were going to have. I also know you get over the raging and become a human being for the other 90% of life. I know that Mr Geek gets it and encourages the blogging because it is fucking infuriating not being able to do up your own arsing bra.

What this doesn’t stop though is my overwhelming urge to go to bed and not bother getting back up. If it’s my problem then I’ll stop trying to make it easier for everyone else and deal with it my way.

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Raindrops on Kittenscl. And mittens on snowflakes?

Dear Mr Geek,
I’d like to write something profound about the rejuvenating qualities of spending time with your best friends.  Certainly calmer and a bit more pragmatic than I was a few days ago.

Due in part to my brain soaking in oramorph, I will stick instead to a Julie Andre’s style list of things that you do. A few of my favourite things if you will…
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Making light of things with blatant innuendo. You see the breast in everyone.

Kneading my shoulders. I wind myself up tighter than a tightly wound thing and add to my muscle knots and tension headaches by being Anxiety Girl. You methodically go through and untangle those muscles and manage to calm my nerves at the same time.

Providing food. It sounds simple doesn’t it? But I just wasn’t in the right place to start eating today and the “better” feeling from fasting is alluring. You tempted me with nuts & chocolate until I stopped wearing the retaliation from my intestines for eating.

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Technically, food credits here go to Mr GypsyTree. Oh this was SO good.

Stroking my hair. This one is odd. I don’t like other people seeing the current state of my hair and so it highlights how comfortable I am around Mr & Mrs GypsyTree having unwrapped my scarves this evening. But instead of wanting to hide my hair from you, I like that the hair that is left is kept back as a gift for just you. What this means is when we lay in bed and you stroke my hair, it’s so much more intimate and creates a little bubble around us where everything is OK.

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I’ve felt so unwell this week and I appreciate that you’ve recognised that and adjusted yourself accordingly even though you’ve been stressed out of your mind too. Things always feel much better when we throw poop at it together. We’re a team. And even if I am barely able to string a sentence together, I love you very very much.

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Just keep swimming…

As a general rule, when people do the whole “I don’t know how you stay so cheerful” speech I just look (and feel) uncomfortable until they’ve run out of metaphors. I just attempt to get on with life and splurge all my frustration out in my blog instead of at real people. But this evening I’m awake past a reasonable hour yet again and wondering if I just don’t sleep anymore.

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I’m not going to lie, despite it being half term and being at home, this week has been quite shit so far. We’d just got to a place where I could step back and assess the spoon situation and start looking at ways to maybe improve my health, then something unexpected and more than a bit scary starts tapping on the tank. Wake up fishy! Why are you sleeping?? Probably because I was blogging at 1am again.

I’m not my generally perky self right now. This could be related to having fully dislocated my shoulder last week which is still bothering me, this new work issue, increasingly dramatic looming threats of Ofsted and a general sense that I actually have no control over my personal standard of living. And there we have it in a nutshell. I am a control freak. I’ve lost control.

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Each morning I need someone to help me get up and dressed – I hate this, but it’s a fact of life. Right now, Mr Geek does this at a time and speed that generally suits my needs. What if he couldn’t do that? Do we have the financial reserves for a carer? Would the kids cope? If we did have to rely on a carer, could I be sure that I’d be ready for work on time every day? Would it be dignified or would I get yanked out of bed by someone constantly watching the clock and tutting at someone too young to be needing help from others?

My appetite is sporadic at best. I fly from nothing to everything and it’s not based on hunger, but my emotional state. I rarely eat from hunger anymore. What if Mr Geek wasn’t here to remind me to eat? He cooks the things he knows I will eat and that won’t make me ill. He sneaks vegetables into my soft, bland carbs. He accepts that me sipping on slimfast is better than nothing when my stomach doesn’t want to play. What if he wasn’t here to regulate my diet? Can I live on slimfast and gluten free pretzels?

Financially, we need me to stay working. We’ve looked at it objectively and are acutely aware that I’m fading fast in terms of stamina at the lower end of the year groups. Being in a chair doesn’t command the same type of authority as much as I used to and I arrive home exhausted. Where I once would put in another 3 hours of marking, I lay in bed on a heated blanket letting the oramorph do its thing. If Mr Geek wasn’t there to help me undress and crawl into bed, what would I do? I know the kids would help out, Tinypants has certainly helped me undress a few times and lives sitting in bed watching Netflix with me in our PJs. But how awful for them to not be shielded from my worst.

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We’d created a routine that had not only shielded the kids and the world from how bad things had got, but also me to an extent that I hadn’t realised before. Mr Geek does so much for all of us so discreetly that it isn’t until there’s the concept of him being taken away that it hits home.

It’s not just that I’d miss him (and I would, because he is my lobster), but this once fiercely independent woman actually can’t get out of bed without his help. Even if that’s because mentally, I’m not ready to let someone other than a very few select people see me naked. Of those handful, distance and health rather scupper any backup plans. Welcome to the inner selfish thoughts of the physically ineffectual.

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I wish there was a way to wave my magic wand and make everything better. I wish I could stick my usual fake smile on and keep going, but when Mr Geek being happy looks on rough ground, my lioness instincts kick in and I get frustrated that I can’t kick arses like I used to.

The previous me would’ve got angry. The current me just feels anxious and isolated.

The only thing to do is just keep swimming…

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Independent Woman

When the girls were babies, it was a military operation to just get out of the house. It was exhausting to just go out for a cup of coffee & go to the park. Much of their first years should’ve looked like this:

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But was actually more like this:

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Now it’s me that needs a military bloody operation to leave the house.

For the first time in months we were leaving the house not for work & without Mr Geek. It was unnerving how worried I was (Although I didn’t let on to the kids). I wanted him there to keep us all safe, but he was working in London so we had to suck it up and brave the world by ourselves. This is a bit weird for me having still strongly believed that I was that strong independent Woman who didn’t need anyone… when actually it turns out that I needed help from my kids to push the chair and really wanted that reassuring pat from Mr Geek. I’ve lost a bit of me to the chair.

So off we trundled veering wildly down the path & hoping we’d make it in one piece and eventually got to the little cafe in the village at the end of our road. And found a step. Oh ffs.

Thankfully people were on hand to help give me a shove.

Next stop was the park for the girls. The wind is chilly & I’m flipping freezing, but the girls are having a lovely time just being normal and haring around the play equipment.

The one thing I did notice is that our previously 10 minute walk has become an absolute mission in the manual chair. The minute there’s a camber or drop curb, I’m buggered. And whilst there are drop curbs everywhere, not all drop curbs are made equal. There’s nothing more terrifying that being stuck on a road whilst your 10 year old attempts to tip you up enough to get your wheels back up on the pavement. Give them their due,  the girls were fantastic. However, I’m particularly thankful that the power chair is on order.

To tick another thing off of the list, I also got over myself and called the DWP about applying for PIP. I’m doing it to stop it hanging over my head, but also because we appear to be hemorrhaging money for various mobility equipment.

All round it’s been a productive day, so I don’t mind too much that I’m avoiding sleep due to an excellent tension headache that is making my neck & wisdom teeth throb. Mainly because I spent an hour electrocuting the worst of it with the tens machine stuck to the back of my neck…. which is surprisingly soothing. No such luck on long term headache removal.

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