#weloveEU or at least we did before #brexit

It’s day 5 in the Brexit house and the housemates are still divided. Actually, this one has just about calmed down enough to write a coherent post. I’ve spent the past few days apoplectic with rage (that doesn’t do POTS any good btw) and swearing at more people than I cared to mention. 

There’s been so many more well written and eloquent posts describing just why I’m so enraged: this one in particular, so instead I’m going to do what I do best: take a deep breath and identify some practical things that people can do to make an attempt at shaking off this image that we’ve generated that all Britons are navel gazing racists looking to restart colonialism. We’re not. Some of us are really rather recent.

Firstly, we need to understand what we’ve done. Yes, all of us. If you are in the remain camp, some of us (and I hold my hands up) assumed this would never happen in a million years and were complacent, some of us (yep, me again) were too patronising to change people’s minds with our figures. We made the awful mistake of thinking that only the ultra right wingers & UKIPpers would vote out; we were wrong. Watch the video below & know we should have tried harder. I do believe part of my raging over the past few days has been feeling guilty that I didn’t do more to stop this shitstorm.

If you voted out (and forgive me, because I’m doing my best to be understanding & all in it together, but it’s not easy), watch this video. Listen to what this elderly woman is saying. Why? Because every out vote facilitated the racist behaviour that makes her too scared to leave her home. You might not be a racist, but your vote facilitated them. You might not be a racist, but you gave the right wing groups a mandate to hate anyone who isn’t white with a British sounding name in public without fear of public outrage. Why? Well, you wanted to take our country back.

Of course, this could just be one isolated incident of nasty pensioners smearing excrement on their neighbours door. Except, I present you with exhibit B, Twitter. I searched for the hash tag #safetypin  (I’ll explain why later)

Just a choice few – I do suggest reading the responses.

This person who might not entirely get where we left…

Or let’s go with blatant racism

OK, so what can we do now? Well, let’s start by acting like humans and being that person who steps in if we hear racist language. Don’t be afraid to use your teacher voice with kids trying to be big & clever – you’ll be surprised at how quickly a bully will stand down when they’re called out for exactly what they are.

An onwards to the almighty safety pin. It may seem like a limp attempt at middle class activism, but for now I’ll be wearing a safety pin in a visible place. Why? As a visual sign that you can approach me with a smile, a question, ask for directions, or if needed ask for help, no matter your race, nationality, gender, or sexual orientation. Importantly, the safety pin isn’t just a sign that I’m not a racist, it’s a symbol that I won’t just stand idly by. I will help you. Hell, I’ll risk yanking out my arms to get to you & I’ll run that bastard over in my wheelchair if need be.

Not everyone is on board with it.

Do I think it’s sad that we should need to do this? Yes.

Do I think it’s worth it if it just makes one person feel safer? Yes.

Am I still a European Citizen? For now & I’m looking at ways I can answer ‘yes’.

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Stripey Warriors

A few weeks ago, I blogged about losing my senses and signing up to the local Race for Life 5k to raise money for Breast Cancer research. Today was the big day & a few of you asked for some photos.

I’m currently curled up in bed with all the painkillers, shoulders loose (only 1 popped out), bruised, skin torn, & a bit crispy from the sun, but it was worth it!

I raced with Mic & Lizzie from my local wheelchair racing club. We used racing wheelchairs because they’re lighter & just like a decent pair of running shoes vs. work shoes, they’re built for sport.

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Spoiler alert! We all finished in record time with Lizzie beating all 3000 runners by finishing the whole 5k in 1st place in 17 mins!! In her own words “disabled, ha! We’re enabled.” Mic finished in a stonking 27mins 18secs after aiming for sub 40 mins and I came in at 28mins 10 secs after aiming for sub 60 mins. Fair to say, we smashed it (mainly due to gorgeous people from our racing club positioning themselves along the course & shouting encouragement).

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Joining us was the lovely tutu’d Rachel who despite only just being thrown into secondary teaching and arriving slightly wild eyed with the look of a woman who’s been surrounded by year 8s for the past fortnight, ran alongside me shouting classic encouraging statements like “get out the way! She can’t brake!”, “Don’t slow down for the dog! Move your hound!!!”, “8 minutes left!! Have any of your limbs begun to detach?”, “We’re 1k off!! We’re going to fucking make it!!” (Love you rach ๐Ÿ’“).

To prepare, Mr Geek had learnt how to strap up my upper body with kinesiology  (physio) tape and spent the morning creating a web of sticky fabric to hold my shoulders in place. This was supported by leather wrist braces & leather wheelchair gloves covered in latex cohesive bandage over my hands & wrists creating sticky paws that allow pushing of the rims whilst protecting my joints & skin (the last few sessions at training have resulted in either torn skin or massive blisters- EDS skin sucks). Today they held out perfectly.

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Starting was difficult because of the sheer volume of people (3000 people running!). Lizzie is an absolute pro & took off like a rocket. In fact, she was so fast that Mr Geek didn’t get any finishing photos of her as she got back so fast she took everyone unawares with no time to grab the camera!

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This is by far my favourite photo of Mic. The fighting spirit is strong in this one. She was clearly in pain and yet giving it absolutely every last ounce. EDS picked a tough fight with her & she’s kicking it’s arse.

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It may have only been 5k, but you know what? It was hard. Pushing against the wind & on a camber for the first half left me like a big ball of lactic acid, panting and wondering if I’d actually make it. I was vaguely aware of my right shoulder wobbling, but had seen our coach on the way up and was not going to let him down by wussing out. Rachel double backed at the end and started running with me at the 2.5k point. Then I heard Kim shouting encouragement and something snapped inside me, but in a good way. This is going to hurt like a bitch anyway, so let’s make it count.

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The crazy tutu’d woman & I went hell for leather on the way back, picking it up another notch on the final 1k. Adrenalin totally took over as my arms kept going despite feeling like they were on fire.

With a final “I can see the finish! We are fucking champions!!” from Rach, I looked up and saw our time. What you see here is utter elation at finishing what people said I couldn’t do & sticking a massive finger up at that “there’s no cure” diagnosis. Mr Geek found me shortly after & hugged me very tight. He got his kickass wife back a little bit today.

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The after effects of kicking quite so much arse aren’t quite as much fun though. I expected my joints to hurt (and OMFG they do), but I also caught the sun which is very unlike me… Whilst wearing tape. This is not attractive. I also pulled the tape away from my boobs a bit too quickly, tearing off strips of skin! Cue much germolene over weeping open skin. At least it detracted from the joint pain!!

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Despite feeling like I’ve been hit by a bus and knowing how hard the next week is going to be after pushing my limits over what anyone expected, it was totally worth it. Wheelchair racing has impacted my health both physically and mentally. I’ve rarely looked forward to physical exercise pretty much ever, but I buzz before racing. A lot of that is due to the people. We may all have disabilities, but we’re adaptive, bloody minded, slightly unhinged, and totally enabled.

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A Personal Best – #RaceForLife

This started as a Facebook post to tell people what hairbrained scheme I’d signed up for next, but I had way more to explain than I could stick on a simple post, so let me elaborate…

I’m not going to bang on about it, but if you fancy having a giggle at me looking like pink covered death, I’m running the Worthing Race for Life next Sunday. Ok, not exactly running, I’m propelling in a wheelchair. Taking part is not only to support Cancer Research UK, but is a middle finger up to the stereotype of being ill.

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This morning, my mum hesitantly passed on a message & conversation she’d had with a local physio who called on Friday. It seems that pain management had referred me to the home visit physio who called to book in to see me (yay!). My mum explained that I wasn’t able to speak to her because I was at work to which the response was “well if she’s healthy enough to work, why has she been referred to me?”. People deal with their disability & chronic pain in different ways. Some can’t work & I don’t judge them. I do work as a distraction technique which works because I love my job (despite what I tell you after 4 hours of year 8). It takes a team of people to get me there & my health suffers as a consequence of pushing too hard, but there is a twisted vision of disability in the UK right now:

If you’re disabled, you should work. “Don’t expect us to lift you out of poverty”
If you work, you can’t be disabled because you’re health enough to work.

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Shock horror! People with disabilities are all different & we cope by being adaptive and imaginative (Cue my speech to text / video marking system). So yeah, this race is a fair bit about pushing my limits. One thing I won’t do is slide into this victim / saviour complex that health professionals use where I am eternally grateful that they deemed to lay their hands on me ๐Ÿ˜’. So far GP & OT have been amazing. Other local team are patchy at best. They’ve accepted defeat with cardiology and sent me to UCLH, next is to get them to do the same for Rheumatology.

So why do I need physio if I’m well enough to work?

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I’ve been in pain a long time. Like PAIN pain? There were signs early on. I’m too stubborn to give in. Mr Geek deserves a medal. Research is important for all conditions.

Right now, I’m in a lot of pain. My hip subluxes daily, my pelvis dislocates as much, my knees & shoulders dislocate more often than I’d like, my back is a weird shape as the discs degenerate, my hands vary from ok to weird bendy claws. I sound like a bowl of rice crispies! I take painkillers, but my body is resistant to their effects, so the dosage I need makes my head fuzzy. The number of times my lower back & SI have moved has damaged the nerves to an extent where I can’t feel my feet anymore & on occasions go full ‘floppy leg’. Nerve function also interferes with continence. Combined with stretchy insides, this requires some adapting.

I’ve made peace with things falling apart & have created my own rehab program to maximise on the bits that do work in my upper body & core which involves daily squeezing of muscles to get blood flowing, massage from Mr Geek, & pushing myself to just bloody well get on with being an adult (between naps) and being involved in wheelchair racing. I still find it hilarious that I’d call it racing at the speed I go, but I’m working on stamina not speed. An average time for a new runner for a 5k is 25mins, I’m currently at 45mins (Although this is based on how far I’ve pushed as I’ve not gone full distance yet). What I need from this sport is the muscle function to stop my shoulders from popping out as my muscles now do much of the work that the ligaments & tendons should do. What I get as I push myself slowly & lopsidedly around a track in a funny looking chair is shouts of encouragement, smiles, normalcy, and fresh air, all of which do me the world of good. Today was hard & my right shoulder was not playing ball. I fought my way through training and subsequently created a mega pain flare which meant spending the evening in a morphine haze, strapped to a tens machine, and reduced to non-verbal communication via whimpers & tweeting. It was worth it though. It wanted me to stay in bed, but I didn’t.  I may have been in an awful pissy mood, but I got out there & put my big girl pants on. Who needs legs when you have a lightweight chair?

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Thirty years ago (age 6) I had clicky knees and my teacher called my mum into school as she was concerned about my hypochondria. I was always sporting a support bandage for a sprain, or crying during PE because my ankles / knees / hips hurt. I was tall & skinny and covered in bruises from falling, or kneeling, or who knows. I loved riding my bike, but 10 minutes into an off road ride I’d be exhausted & my knees would hurt. I was a weak child. I wet the bed – this was never to be discussed outside of the house (to my knowledge I don’t think we even told the dr). We tried everything, but it continued way past an age where you’d want to admit to it. (I’ve not even blogged about it before, but it’s time to put that piece of the puzzle into place).

Twenty years ago (age 16) I didn’t know that everyone else didn’t ache like hell by bedtime. I certainly knew that it wasn’t normal to find yourself desperate to pee and not hold it. I couldn’t stay awake as long as everyone else who could party all night. I was miserable. We were teenagers, so walked everywhere and my hips would scream & getting to hot would lead to being so dizzy I could hear my heartbeat whooping past my ears. Consequently, I was told it was in my head & given antidepressants. It became a self-fulfilling prophecy with me believing that the physical pain was in my head. For a number of years I self harmed through traditional means, risky behaviour, and poisonous relationships.

Ten years ago (Age 24) I had two tiny people who arrived early, a c-section scar that tore and damaged the nerves in my stomach, shins of a 10 year old (bruised) and was in a whole lot of pain with my back, hips & knees. I had migraines & after getting really run down with babies, university, & working evenings at the theatre, I caught viral meningitis. I used sticks & a basic folding wheelchair on and off when my back was particularly bad. Physio tried to reposition my spine & damaged my pelvis permanently. Each injury was looked at in isolation & we had no idea why I had such bad luck with my joints.

A year ago I was in daily pain, taking regular painkillers and using sticks to move around most days. I had no idea why I was in so much pain & my joints were so unstable. Picking up.my laptop bag, I could feel my elbow & wrist separating, so Mr Geek bought me a bag on wheels. I was exhausted & aside from a diagnosis of osteoarthritis, was seeking help to understand my body. My GP was reluctant, but gave in when I begged for something more than just opiates.

8 months ago, I could barely move out of my wheelchair or keep hold of a meal & had trouble swallowing. I lost weight & we wondered how bad this would get. I saw a specialist in connective tissue disorders who put all the puzzle pieces together with a diagnosis of Ehlers Danlos Syndrome type 3 (Hypermobility) with a type 1 crossover  (Classical). That diagnosis changed everything. Ok, it’s a diagnosis without a cure, but it’s one that explains to A&E why I’m there, it’s one that paved a way to pain management, it gave me a foundation to work from. The pain was real & now I knew why.

Now I’m going to propel myself 5k in a paralympic style racing chair (lent by the lovely Harriers Team). Mr Geek since we first met has been my relentless supporter, physio, carer, chef, comedian. He quite literally picks me up when I fall down. He has facilitated me fighting my own genetics more than any doctor or physio. He’s put a fair amount of his life on hold for me. This probably isn’t the time to get into why Mr Geek isn’t allowed to run alongside me (men get breast cancer too & yet are banned from this event)., but he’ll be there at the finish line as a real reason to make the full distance. I’m by no means better, but we have so much more of an understanding of my body & how it’s likely to function. Knowledge is power.

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So, I’m partially doing this as a thank you for believing that I can fight this in my own adapted way & also to support someone very special who’s kicking the big C in its balls. Cancer Research could save thousands of lives and countless more family & friends who are affected.
When the consultants finally get around to working together instead of intellectual willy waving, there is hope for a treatment for Ehlers-Danlos Syndrome. Until then, I shall wobble my way along the track supporting & representing those who can’t.

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Jersey Duvet – For Sensory Overload.

When Paddington Bear spent his first night with the Browns, he wakes up the next morning and stretches out his legs across clean, cold, white sheets and feels a sense of tremendous calm.

Beanpole & other dear family members have Aspergers, a form of Autism that can leave them with sensory overload from sound, light, or touch. Interestingly, that overload is also common in people with Ehlers Danlos Syndrome. The difference is our self soothing behaviours. My poor Beanpole hasn’t reached the stage where she is aware that things are building and will meltdown when it all gets too much- her triggers are sound, textures, and people, she’s much better with visuals. I become overwhelmed by visual stimulus which causes headaches and a knock on of this is sensory overload from just too much bloody pain. I don’t scream & cry, but boy do I ever get snappy. I’m working on this.

Beanpole needs to be cocooned in bed (we rather unkindly refer to her bed as the rats nest as it’s built up with blankets, toys, & “important things”), I need contoured space; Beanpole loves nothing better than to be hugged tightly, I become overwhelmed by hugs as they cause pain; Beanpole craves coolness, I crave heat (Then complain that I’m potsie). Both of us find soft fabrics soothing.

Enter the Jersey Bedset.

(Note – this does contain a review of the Bedset from Dunelm Mill. I bought these myself without prompting & have received no payment or gift etc.)

The Bedset we bought was the Jersey Marl set from Dunelm Mill (at time of posting, these are 50% off, so ยฃ15 for a superking duvet set). As we had recently bought twin electric adjustable beds (now bolted together), we bought the superking duvet set which is the duvet cover & 2 pillowcases, 2 extra pillowcases, and two single fitted sheets. The adjustable bed has been one of the big purchases, but one we didn’t regret. We pretend that we have a mahoosive bed as two 3ft beds bolted together make a superking, but generally stick to our own mattress and my constant thrashing no longer disturbs sleeping beardy. (I considered taking a photo of snoozypants for this section, but thought better of it)

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Buying sheets for an adjustable bed is a pain in the posterior as the mattress length is 200cm instead of the standard 190cm. However, the fabric is stretchy and fitted the mattresses perfectly. Previously, sheets have come from le internet & at a premium because adjustable beds come under “disabled equipment”. I tend to imagine Jafar making the pricing decisions for disability gear.

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Mr Geek looked at them the first time and sighed as they are “a bit beige”. Agreed, there’s no pattern and with everything one colour it’s not the most exciting bedset. The difference is tactile. When you live with chronic pain or sensory overload, the last thing you need at night is something scratchy or starchy and uncomfortable. These are neither. Just like Paddington, I can stretch my feet out & feel soft sheets that never have that sharp coldness of cottom, but also rarely cause me to overheat.

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When you wear a tshirt, it folds and stretches with your body, and similar can be said for these. The down side of this is the duvet having a life of its own with baggy bits of cover appearing at the edges. Mr Geek reliably informs me that this does not affect the ease of putting it on the quilt, although getting it perfectly straight is nigh on impossible. Beanpole and her rats nest see this as a bonus feature.

From a sensory perspective, these are particularly calming as there is a single very soft texture, a single neutral colour, and don’t create extremes of temperature. For Beanpole, this means she can turn herself into a super soft sausage roll, and for me, I can focus on mindfulness allowing a bit more restful sleep which is a blessing in itself.

Personally, just in case they stop selling them (please don’t!), I’m going to buy an extra set of sheets. I guess that’s my vote for these as an excellent purchase.

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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 (๐Ÿšจ๐Ÿ””AWOOOGA! Alarm Bells!๐Ÿ””๐Ÿšจ).

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.