Live to work, or…

At the start of the week I commented to the lady who drives me back & forth to work that this term doesn’t feel as long as last. After a week of migraines, popped out shoulders, & cold limbs, I take it all back. I’m not wholly sure how I’m going to drag my wobbly aching carcass through another week of this. EDS has once again knocked me flat on my arse. My current days are going something like this:

6am
Mr Geek wakes me up by stroking my back, then helping me stretch out & rubbing my feet & legs until I can tolerate using the crutches to get to the loo. Then he gets out my clothes and helps me get dressed (all the while discreetly checking that I’m not going to topple over from a limb giving out or just plain potsy fainting).
Right now, mornings are hard. I wake up feeling like I’ve been hit by a bus & am making it to work not through guts & determination, but because of Mr Geek physically moving me through my morning routine & fear of losing my job. Even the idea of cutting my hours puts me on edge – despite the potential for feeling physically better and actually getting to spend some time with my offspring, not being full time makes me more dispensable & if Mr Geek stops working from home, there’ll be zero buffer against people talking at me (no rest potential there – may as well be herding kids).

6.30am
Sat on the side of the bed, Mr Geek brushes my hair into a sock bun whilst I attempt to plaster my face in enough self-tan moisturiser, concealer, eyeliner, and contour the living crap out of it until it submits to looking human. Final touches – my headscarves to protect my hair from breaking, because although it’s looking healthy again, it starts matting & breaking the minute I leave it out.

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Mr Geek saves the morning yet again here surrounding me with my baskets of morning drugs & make up. He doesn’t leave me until everything is in reach.

7am
Down the world’s slowest roller coaster to my chariot awaiting me at the bottom of the stairs. It’s a work day, so it’s The Beast. The powerchair is necessary as 8 hours+ of self propelling is arm rippingly painful.
It’s weird, the powerchair is built specifically for me, but I’ve come to resent it. I’m passive in it. In utter contrast, Leonardo (my manual) is an extension of me.
As I get into the kitchen, Mr Geek hands me coffee & hot milky weetabix which perks me up enough to kiss the kids goodbye and wheel myself into the taxi and off to work.
I don’t want to be leaving the house right now. I want to crawl back into bed & rest my bones that won’t hold me up. I want to cuddle up to Mr Geek and giggle over my snap crackle and popping joints when he cuddles too tight. I want to sleep. But, instead I put on a big smile & say good morning in my Oscar winning performance as girl who is coping.

7.40am
Off to work. Bones rattling. Pain levels increasing. The chair is strapped down in the van, but I am not. I wobble freely over the hill wincing at the cattle. We’re both headed for vets soon.

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It's not a terrible view on my commute

8.15am – 4.30pm
Holy hell in a handbasket. There’s a blur of 100+ students, marking, worrying, patrolling of corridors. They ground me & remind me that my little whirlpool of pain isn’t the whole world. There’s other shit going on & if I don’t vacate my pity party right now, I have a shit-tonne of kids to dissapoint. And that’s not going to happen. They couldn’t give 2 hoots if I’m on my feet, in a chair, doubled over in agony, they need entertaining & their little sponge minds filled with the stuff I’ve got. Life goes on.

There’s also a rising tang of pain that exudes from my hips and hands and across my body. Painkillers and work don’t mix well, so let’s suck it up for a few more hours…

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5pm.
Home. Kiss kids.
Lay on sofa. Oh God my head / joints / back / [fill in the blank].
Nap.
This is probably the most restful hour of sleep of the day. It’s delicious.

7pm
Wake up to Mr Geek trying to talk to me and waving food in my general direction.
Then straight to bed & set the bed incline to sat up with raised feet whilst blogging / watching TV until the evening drugs kick in enough to let me pass out again.

To sleep. Per chance to dream.
I wish I could sleep.

It’s a miserable way of looking at my days, but it’s my reality during term times and it becomes a harsher reality as the term goes on. This half term is 7 weeks, as is the next one. Most holidays I’ll keep working from home to stay on top of things, but this half term I’m planning to rest.
I’m not wholly sure what the long term goal is now. Right now, what we’re doing is just about physically surviving the week, then treating every weekend like it were a tiny holiday (and getting mightily frustrated if time is ‘wasted’ not making the most of our down time. Ironic eh?).

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[Insert Witty Title Here]

It’s been a funny old day facilitated by a lot of painkillers. It’s been a bloody long one too. A total of 13 hours from leaving for work to returning home. That might not be much to some, but 13 solid hours in the wheelchair with no chance to transfer, or stretch out, or in fact have a nap after a tosh nights sleep was all a bit much.

I was greeted by a colleague today who goes out of his way to help me navigate the doors at work each morning. Not out of pity, but because he gets that it’s just hard opening doors and he misses the sense of community from his home country that is lacking in the UK. I enjoy our morning chats and I find his very honest love for people infectious. I’m a grumpy arsehole in the morning,  but he brightens my day by leaping out of his classroom to hold open a few doors just for me.

This morning he asked me how I stay so cheerful and positive. He really meant it. I did a presentation at the start of the year to the whole school faculty and apparently I was genuinely passionate. I do smile. I do ask how people are. I do laugh off the crappy days. It worried me that I seem so genuinely positive. Have I really got that good at faking it?

Of course I’m not going to tell you I’m in agony and my pelvis is burning. Instead put on a big smile and say “I’m fine! How are you?” Or make some stupid quip about having all 4 limbs.

Of course I won’t tell you about spending 20 minutes this morning layering on special concealer, foundation,  and powder to hide the eye bags. I do appreciate you saying how well I look though as it validates my make up skills.

Edit: before and after. Eek!
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Of course I’m going to shrug and say it could be worse, or there’s nothing I can do so why worry? These lines are so well versed that even if believe them some days. And actually only a couple of people get away with the following up of “and how are you actually doing?”. Mrs G, Mr Geek & Mr Gypsytree get honest answers. They are the glue that holds the bits of my mind together. Mrs Gypsytree aka Sherlock gets a special version where I don’t have to say much.*

How do I stay so positive?  Easy. I fake it. And apparently I deserve a bloody Oscar.

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The reality is that I got home today after a 12 hour stint at school + an hour of travelling in so much pain I found it hard to speak. I hit tired at lunchtime and pushed through tired into manic, then into plain weird where I got cross with Mr Geek for chewing to loudly near me, then finally rock bottom where I just cried buckets because I typed the Gypsytrees’ collective names. Just to help, I now can’t sleep as my legs are restless and ALL the painkillers aren’t helping my extremities or the headache that’s creeping up the back of my neck.

A huge part of that reality is being scared that if I rage about being in pain and physically useless all the time I’ll get boring and that stuck record will get old and eventually be left alone. So instead I smile as if my life depends on it. Because to a certain extent it does.

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On a much funnier note, a student at school went joy…err..hopping on my emergency crutches that I keep in my 1st floor classroom today. In his defense, he hadn’t considered why they are there, nor what would happen if there was a fire and my chair failed. Equally in his defense, with hindsight it’s quite funny watching someone describe a TWOC offense (taking without consent – which is usually reserved for vehicles) when referring to crutches. How far did he think he would get? We’re they going somewhere?  Why would you do that? Is there a crutch black market? The teenage boy brain baffles me. The hardest part : keeping a straight face.

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* Note to self: It’s OK to miss them. It’s not ok to get runny mascara over the Marvel Duvet cover. Captain America now looks like he’s been down the mines.

The Good, The Bad, and The Uncomfortable Truth

I have spent the past fortnight working myself into a panicked frenzy over the Occupational Therapy appointment. Truth be told, a few stories of social services threatening to take away kids planted seeds of terror that grew faster than bamboo. I hate that my kids have to help me out. At 9 & 11, they shouldn’t need to help their mum get dressed.

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After my less than productive phonecall with social services, I was less than receptive. And despite that, we’d spent a full week cleaning (we meaning Mr Geek) because clearly cleaning the house will make you a better parent.

I’d made an effort to look like I was totally coping when she arrived, despite having been trashed at work and arriving home to find that Dad had collected TinyPants from school early with a fever.

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Then I was utterly bowled over by her being totally supportive. She completely saw through me pretending to be fine (and even wrote down me wincing as my stomach cramped – some idiot had abandoned the meal replacement and tried to feel better at lunch by eating mac & cheese. There’s not a lot less fodmappy and I paid for that mistake for 9 whole bloated crampy hours).

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She spoke to me like a real human – not pitying, but practical. And it took that one conversation to flick on the light bulb that if I got over myself and started using the chair in the house instead of doing the death shuffle on crutches, I might be a bit more independent.

It hadn’t occurred that not walking might give me the ability to make myself a drink, or help with the dishes, or just get to the loo without wanting to cry. Whilst the crutches are important because I want to retain some muscle strength, I’m buggering up my shoulders and wrists.

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So why don’t you use the chair in the house? Well, mainly because of the doors (and my pride) – I can’t get my chair in the front door, or out the back door to the conservatory where Mr Geek and I have our living space (my parents live in the front room). And in one sentence, she solved it.

“OK,  we’ll order you 2 ramps and whilst we’re at it, a wedge so you can use the patio”.

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Say what you like about having to wait for British health care, how many uninsured Americans would just be given house adaptations to help them feel more normal?

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I’m not a great talker one to one and get very nervous, but she just knew her stuff. It was one of the first non-specialist appointments where I didn’t need to explain EDS. She’d already spent time looking it up (whoa). She was just great, and even offered a full copy of her report so I could add it to my PIP evidence.

It may take a while to sort out the ramps, but I’m not sure I’m totally ready to use the chair at home. I can see why it would help, but it’s a bit scary. I may try the manual one inside for a while just to get used to doors and stuff. Hey, it may let me stay up for a bit longer in the evening rather than going to bed at the same time as the kids!

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This all actually happened yesterday but I was too tired and in pain to write. I’m coasting on my painkillers which just aren’t cutting it for working full time. I’m struggling to find something actually effective and it’s a long old road with the GP to find the right one. For now I’m sticking with combining dihyrocodeine and co-codamol as a cocktail with gabapentin and the other non-pain bits whilst I wait to see the GP next week to return the tramadol which was about as effective as a tic tac. I could see them sooner, but work is getting in the way (me with parents evening tomorrow & Mr Geek with working in London on Friday ), so I’m going to just have to hang on in there for a bit longer. I’ve kept it pretty much under control up to now, but today I nearly cracked.

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It’s hard to describe the pain, but it’s similar to when I was an idiot on rollerskates some yars back and fell, promptly putting my arms out straight which on impact with the floor dislocated my elbow, fracturing it on the way back in. That sort of gnawing ache that makes you feel nauseous. Now apply that to multiple joints and other bits you can’t quite identify and you’ve got how it feels for me.

There are more and more nights where I sit up randomly rubbing joints or pushing them back, talking myself round that I can get through another day at work. Tonight is particularly hard. I’m tired. Proper tired. And yet in too much pain to sleep (hence blogfest) or remain still because twitching and twisting seems to help or at least give the impression of crawling out of my body. By Thursday I’m generally a mess anyway, but tomorrow holds a 13 hour day of teaching, then meeting, then parents evening. What I want is to curl up and stay in bed until the worst of this wave passes. What I will do is grit my teeth, slap a smile on and get on with it.

My favourite phrase is “this too shall pass”, except it’s not passing despite handfuls of opiates, and putting on a brave face is getting really hard.

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Smarties Have The Answer

Today was a tough one. I’ve been extra sore and it was an extra long day.its that time of year where it’s cold, everything needs marking & every week has a parents evening. This too shall pass.

I had my interview with occupational health today. It was all a bit odd. We started off with her reading out the questions that had been sent:

How can we support her further?

What is the prognosis for long term teaching?

Wow. That was  curve ball. Poor woman, she hadn’t realised the they hadn’t shared the referral with me, so she did her best. She suggested that I gave her some background on what my diagnoses are. “What’s  ehhhhl… oh I can’t even pronounce it!”

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We chatted about what EDS is and the various referrals I have. Then she explained that usually she deals with back pain and I was better off talking to Access to Work as they’d have more information. Poor woman was way in above her depth and tried to get through the interview as quickly as possible. She apologised for asking me the suicide question – I half joked that it was ok, I’d been asked far worse in the PIP form and that I was surprisingly perky considering the past few months. Then she asked me to list the medication and made ‘that noise’ (you know, that one that asks you why you aren’t constantly unconscious). I had to explain that quite a few of them are about as effective as smarties because whilst one of the main identifiers of EDS is magnificent volumes of pain, it just balances it nicely with resistance to local anesthesia.

And that was it. You’re pretty fucked aren’t you? I guess. Does that make you want to die? Not really.

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And that was it,  off I trundled back to my classroom and got on with my day. It wasn’t really until I got home at 7 that I keeled over and stopped functioning.

Mr Geek brought me bubble & squeak from yesterday’s leftovers (my favourite ) and bed called so loudly that 8pm was the wall that I hit.

Heading upstairs, our room was lovely to walk into after the hours that Mr Geek put in over the weekend to make it nice, and so I wouldn’t freak out when the Occupational Health lady comes over tomorrow. He even got me this to keep all my medical stuff tidied away but still to hand from the bed.

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To finish the day properly, he bought us both a mega pack of smarties which are definitely not allowed on fodmap, but made me feel mentally better (we shall await feeling physically sick shortly! Totally worth it. I regret nothing).

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Tonight, smarties do have the answer.

A Little Help From…..

I’ve not blogged much the past few days. We’ve been busy sorting out applications left right and centre to get some mobility assistance to keep me working & generally safe in the house. There’s been the 13 page additional statement for the PIP form that I’ve finally completed (I’ll do a separate post about it later, but suffice to say, it doesn’t fill you with masses of self respect ), contacting Access To Work to help with ramps at school and help with getting my chair in and out of the car, and handing over unspeakable volumes of cash to get a stairlift installed.

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So yes, I’m 2 months shy of turning 36 and I’m having my own personal roller coaster installed. It’s just slower than you’d hope (no loops). And I’m not wholly sure I can get my head around using it just yet, which is a shame considering that it costs over £5k to install  (Getting ill apparently equates to hemorrhaging money).

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I missed a call from Adult social services today for a phone assessment for occupational health. There’s an irony to not being able to answer the phone to occupational health because you’re at work. *facepalm*

Still, at least unlike the PIP trauma, I’m not having to prove how shit I am to get assistance from Access to Work or Occupational Health – a diagnosis is enough. They genuinely feel like they want to help. There’s a general feeling of disinterest for any disability assistance from central government sources -A friend asked if I’d give feedback on the new online form for PIP – for the first time in a long time I couldn’t bring myself to even look. I felt demoralised and dehumanised by that form & the idea of going through all of that again in person in an interview just makes me want to cry. On the flipside, work are being so wonderfully supportive and are absolutely living up to their motto of being a place that people want to come to. Management genuinely feel like they care and I had the most touching email from a student thanking me for not giving up on them even when my own life is falling apart.

I only wish these guys would take a leaf out of my employers book.

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Work & Mr Geek are giving me back much of the self esteem that form kicked out of me and I’m starting to feel like my badass self again. I know it’s really bad taste, but I need to laugh at myself and Cartman just says it best.

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Raindrops Keep Falling On My Head

I’ve had an utter bitch of a day & I’m going to release it into the world with a great big rant…

I’m basically shit on Thursdays. I’m worn out and generally depleted of all reserves,  so when things conspire, I don’t handle them well. It’s a pattern that other people have noticed too, and today I think I can say I didn’t cope.

I woke up tired which is reasonably standard, but got dressed and sipped some coffee. On the way in I made mental plans to call for help when I got out of the lift to make it up the ramp without dislodging my shoulder like I did on Tuesday (pleeeeeeease hurry up electric chair!). I got to work and managed to park in the disabled bay which is on a weird curve and with the parking sensors being out atm careering into the wall is imminent. I crutch shuffled to the boot & unpacked the chair as everything became nicely damp from the pitter patter of driving rain. *You can do this. Just get in the warm*

The lift is at the back of the building, so off I propel up the ramp to the main door, along the corridor to the maths door,  up the slope to the humanities door, through the block fire door & along to the lift (very thankful that our students have exceptional manners and hold all the doors for me). I saw one of my fellow teachers at the bottom and asked if they’d meet me at the top for the final push. *going better!*.

I push the lift button. Nothing. Try my keys again. Nothing. Nothing. Nothing. NOTHING. Urgh lift broken.

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Dragged self into work because people had gone out of their way to change my teaching room to a more accessible one and now I can’t access it. Sat in chair contemplating if you can throw toys out of something that isn’t a pram. Asked a lovely child to go to the office for help.  Lovely office ladies arrive and in my overtired Thursday reaction burst into tears. Like a total professional (what is wrong with me???!). Just finding being alive frustrating. So, off to the office I propel to arrange cover for registration and hopefully fixing of the lift.

As it was, they turned the lift on and off again and it sort of fixed  (as in it works, but I have to bump the chair up a several inch ‘curb’ as it’s not entirely reaching the 1st floor. I feel so safe)

As usual, the kids were awesome, and lessons went as planned. I had no duty at break, so I wheeled back to the lift to get to the accessible toilet (downstairs). It’s not what you’re thinking, aside from the weird step,  the lift was fine. But the toilet was locked. Not locked as in occupied, but deadlocked to prevent use.

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Back I go to the front office to ask if anyone has a key. No…. but as they are awesome ladies, this wasn’t going to stop them. They were straight on the phone to premises who said they’d deal with it later. But I need a wee now!

The only other accessible loo is the other end of the school, so I’d better get a wheel on. There’s only 10 minutes left of break. The bell went as I wheeled myself back and I resigned myself to being late for class.

Whilst I resigned myself to this just being a shitty day, the awesome ladies weren’t having any of it and found me in my classroom to tell me that they’d called in occupational health to make sure that I have everything I needed.

During lunch, I headed down to the junior part of the school for the final lesson. Still raining.

Finally time to go home and I headed out to the car. Across the playground, heaving my chair, in the rain. It doesn’t get more pathetic than this. I was tired & grumpy & wet.

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For those of you who don’t live here and think British weather is just all about the drizzle, it’s not. The three villages I drove through to get home were all flooded. No one batted an eyelid – crappy weather is par of the course.

I miss the warm summer weather with its muted joint pain.

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Mr Geek hands me a lovely bowl of noodles as I realise that I haven’t actually eaten all day aside from a herbal tea.

Now in bed with the tens machine massaging my knees and my lovely teddy bear fluff blanket warming me up.

Tomorrow will be a better day.

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