Lucyisms

Yesterday, we met RunningWoman for coffee & caaaake with our various offspring. We were catching up on roboleg & the wheelchair use, and bits falling off me at random when her 14 yr old daughter had a sudden thought:

“Ooh mum! Will you watch the Walking Dead with me today?”

Then it dawned on her how that thought had formed and she stopped. And we all fell apart laughing.

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I love the unformed frontal cortex of teenagers…. and our ability to laugh at he whole situation.

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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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I’m not here to make your bad day feel better

The term inspiration porn was coined by people with disabilities, used to describe when they are called inspirational solely or in part on the basis of their disability.” Wikipedia (because I can’t be arse to go beyond page 1 of Google )

Tldr:

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A long time ago, this Stella Young explained far better than I ever could why I feel uncomfortable with motivational posters using disability to get fully able people to get motivated, and also why people using the word ‘inspirational ‘ on comments on my blog when clearly I’m just bitching about my body (please don’t take this personally if this was you – read on, there’s a proviso. If your comment was approved,  this certainly isn’t you!).

In researching this post, I discovered that Stella suffered from Osteogenesis imperfecta (also known as brittle bone, a genetic condition which like EDS, affects the connective tissues in the body, and has many different types and varying degrees of severity). I also learnt that she died in December 2014, aged 32, leaving this world with a polkadot shoe hole in it.

She was an inspiration to me, not because she sat in a wheelchair, but because she had the metaphorical balls to stand up on stage and tell people to piss off and be inspired by people’s actual actions, their words; She taught kids, and taught them well; finally, she was hilarious. Don’t make yourself feel better because your life is better than theirs. Pity is not going to get you brownie points around here.

We have a friend who I equally find inspirational because he kicks arse when he needs help and holds no quarter, has funded and made a film about his condition, and also stands up for others with people that most would be a quivering mess with. The fact that he’s in a chair & requires help with most things is by the by. First and foremost he also hands me my arse in any PvP situation, can drink me literally under the table, and more recently has provided some brilliant support.

Inspiration is not about being less able. I’m inspired by the volume of love and committment a particular colleague shows to her students, I’m inspired by Mrs Gypsytree who sets her mind on things and does it in the face of naysayers, I’m inspired to keep learning by Mr Geek who finds new and cool stuff to do with his tech (maybe not read inspired there, read overly competitive).

Being inspired is a brilliant thing. If I happen to inspire you to advocate for yourself, or love learning, or just lighten your day by being flippant, then I’m one happy lady. But please don’t find me an inspiration because my shitty day is worse than yours.

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.

 

Stop Trying To Be Normal – Things My Daughters Teach Me

This is a bit of a follow up on yesterday’s rant with another classic IDS quote. I will however, do him the service of keeping his quote in context:

“I think the figure is now over 220,000, which I believe is the highest figure since records began, in proportionate terms, but the most important point is that we are looking to get that up to the level of normal, non-disabled people who are back in work. Those with disabilities have every right and every reason to expect exactly the same support into work that everybody else gets,”

So I’m not normal. What’s new?
I’ve been struggling with using the D word for a while and have been using my blog to test the water by dropping it into conversation here before I use it with the general populous.

But two conversations with and about my daughters have hit it home this week and left me wondering why I was so uptight about it.

TinyPants, who is now 9 and speaks her brilliant little mind as if she were running the country mentioned offhand to me that she’d “been talking about your disability at school to my teachers. They didn’t know you were disabled.”.
I tried fluffing it out saying well yes, Mummy is in pain and I do use the wheelchair, and sticks, and….

Then she looked me square in the face and said “You are disabled. Your body doesn’t work. You are my mum and you’re disabled. It’s a fact. Just like Best friend is my best fried and she’s Brazilian. What’s the problem with saying it?”

Um, nothing you blindingly insightful child. Bloody hell, never change.

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Cue cute picture of TinyPants with mega milkshake testing said best friend

Then we had parents evening for Beanpole. We had the usual are you aware that your nearly 11 year old is tackling GCSE papers? conversation. Yes, she’s also totally unaware of how clever she’s become  (This is a good thing) so she’s also working her socks off. Clever teacher. But the thing that struck me, and made me terribly proud of her was the gushing from her teacher of how great it is that she refuses to change to impress people. She sticks to her slightly oddball guns and does what she feels is right and makes her happy. Who cares if she loves dinosaurs and has read every book in the library, she is & looks how she wants to (within set parental limits), and figuratively sticks two fingers up to the crowd. Because of she literally did it, she’d be grounded forever.

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Less cute, more emo - only my oreo milkshake understands me.

So neither of my kids see the point in normality, nor do they see disability as not normal.

We are who we are. And I’m very proud of them for being better than me.

An Open Letter To Iain Duncan Smith

Dear Mr Duncan Smith,

Whilst I am aware that it is not policy to comment on individual cases, I would very much like your personal opinion on one particular scenario. Mine. (Although there are many, many more like me and in far worse positions)

This is not one of your made up examples in a pamphlet. This is a real life human who despite having never met you, has been personally affected by your actions. Because of this single fact, I would be much obliged if you took the time to read this letter and empathise, not sympathise with the situation.

In your recent speech at the Conservative Party Conference you stated

We won’t lift you out of poverty by simply transferring taxpayers’ money to you. With our help, you’ll work your way out of poverty.

I do work. In fact I am clinging onto my career by my fingernails and not because I am not successful, but because of the physical limitations my body places on me. First and foremost I am both a mother and a Secondary School Teacher of Computer Science having come from a software development background and I love my job. Second to this, I have a genetic condition known as Ehlers-Danlos Syndrome. I do not expect you to know what this is, but in a nutshell this is a condition which means the collagen in any connective tissue in my body is altered making it more stretchy than it should be. This causes joint dislocations, gastric problems, heart rhythm problems to name but a few.

I now use a wheelchair on a daily basis to support my current injuries, manage pain & fatigue and prevent further injuries.

Let me introduce you to my legs.

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On the right, I’d like to introduce you to Roboleg. This knee is inclined to overextend (bend backwards) or rotate and give way so a hinged brace holds it in place if I insist on walking with crutches rather than using the chair. On the left is my newly braced dislocated knee which threw it’s kneecap to the wind because I dared to turn right whilst walking with crutches.

That’s both legs. Are you still running the DWP at full capacity whilst your knees shout for attention? Good. Keep supporting yourself, because not working is just laziness on your part.

Did I mention that EDS means that any surgery that might help takes extra time to heal, or stitches may tear through my skin?

My legs are my visible part of my disability. Add to this disc degeneration in my spine, pelvic subluxations daily, shoulder & elbow subluxations when I pick up anything heavier than a book, hand and finger pain from minor joint subluxations and the occasional dislocation in my fingers which make manual writing nigh on impossible now (my handwriting in prep school was beautiful) and typing without wrist splints excruciating. It also means self-propelling my wheelchair hurts.

So, now it’s not just your legs, but all your joints. Are you still skipping to your office? If not, why not? After all, not working is just plain lazy. Get off your backside,  you won’t be getting any handouts.

And what about all this pain? I have a pill planner. Not because it looks pretty on my bedside table, but because I have so many and woe betide my pain levels if I forget one. We live in a country where I am lucky enough to have access to the NHS which provides me with the medication I need. For £100 per year, I can cover all of my prescriptions with my NHS loyalty card.

On a scale of 1-10, people describe a dislocation as an 8. I’m not happy about draining the NHS of painkillers, but with things popping out each day it’s a necessary evil. Aside from being a drain on the economy, these drugs also cause short term memory loss, hair loss, gastric issues and physical addiction. Combine this with the mental health aspect of going from a high achieving and active young mother of two to struggling with daily tasks both physically and sometimes mentally. It’s frustrating. It’s difficult not to be angry at the world sometimes.

So, you’re in pain, struggle with mobility and also suffer from side effects from your medication. But in order to be treated, you need to see doctors. So you must also attend medical appointments with various specialists who will dictate when these are (btw, that’s been 3 in the past 7 days all during office hours). How’s your job doing? Still sharp as a button? Or are you close to becoming a drain on the economy?

So, how with all of this am I personally still working? Because I love my job, but also because I don’t trust you to help. I finish most days in so much pain I’m physically unable to speak to my family. This is not a forever option. Something is eventually going to have to give. Is it worth this much pain and causing my condition to worsen because you “won’t lift you out of poverty by simply transferring taxpayers’ money to” me? I will of course discount that horrific amount of tax I’ve been paying every month for the past 20 years. Because those taxpayers (er.. me?) would clearly be appalled if they were paying national insurance and tax to support people who physically needed it. I’m sure they’re delighted about their money going towards the House of commons champagne bill. (I’m not a delighted taxpayer btw – it’s abhorrent).

Right now, I really could do with a bit of help with practical things like parking & adjusting my car to help get my chair in and out. However, I am so fearful of your PIP process that despite using a wheelchair and both legs in braces, I have not applied. Why? Because I can’t imagine your assessors accepting this as legitimate from the personal accounts that I have read. Sadly, without PIP, many other doors are closed : blue badge parking, disabled rail card, access to work, motability. All that help rides on an interview for a benefit that I don’t want. Why on earth not just allow a GP or medical professional to register you disabled?

So, here I am at a bit of a loss. If you were in my orthopaedic shoes Mr Duncan Smith, what would you do?

I fear however, that this will be a rhetorical question.

Sincerely,

Owner of Roboleg

Pop! Goes The Kneecap!

After yesterday’s post complaining about my knee, I do feel slightly better having got medical confirmation that yes I did dislocate it and cor that is a lot of bruising…

A whole morning spent in A&E confirms that firstly, when your kneecap falls off, then yes, that is a full dislocation; secondly, grabbing your knee and cracking it back in as soon as it falls apart is indeed a good thing; and thirdly, the A&E services that the NHS provides are everything I would hope for from my GP (friendly, listen, treat me like a human and super efficient). I was in, seen, xrayed, rammed back together and stuck in a splint all in under 2 hours and sent off on my merry way with the addition of “better crutches” to help with wrist sprains around the house. The sheer volume of Velcro I have strapping various supports to my body now means that I crackle every time I move. Add this to the joint popping and I’m basically a one (wo)man band!

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My newly given mission was to head to the mobility shop to get a leg riser for my wheelchair. Armed with the make and model, I asked if they stocked anything. Apparently, what I requested was tartan paint and was assessed with the intake of breath generally attributed to those of the plumbing or car mechanic trades. And in true air sucking form, it did cost me. £132 lighter I emerged having hired a chair for a week which did have a leg riser. (Admittedly £100 of that I’d a deposit, but still.). So now I’m not just navigating with wheels, I also have a battering ram. A very sore and swollen battering ram.

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When we got back,  I called work and explained that new bits had fallen off and with the additional battering ram out the front I just can’t get around the classroom  (or manage the stairs, or drive). So that’s me grounded for the rest of the week. Or at the very least, using Google Classroom to the limits.

Just when I thought my day couldn’t actually get any weirder, we took the kids to their trampolining class and I was wheeling myself towards the bar (for lemonade Judgey McJudgerson ), when a terrifying child’s carer stops me in the leisure centre and asks if child can pray for me… ummm… I don’t want to upset child… that, and I’m a naive Englishwoman who assumes praying is going home and quietly talking to your diety in your own time and space, and that everyone else has the same personal space and eye contact agreement that was secretly declared when the London Underground was formed, so I say yes….. I promptly find myself with full laying on of hands praying from both of them in the middle of the leisure centre reception… with me desperately resisting the urge to wheel myself off shouting “for science!”.

How on earth are you meant to react to that??!

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