I’m not an #Ableist but…

It’s time I quite literally wheeled Stella out again. The world needs a replacement for the blunt but very funny woman she was. This is the woman who got drunk, fell out of her chair & broke her wrist. No regrets aside from spilling her wine.

Anyway, this evening Facebook and I clashed. Ok, not actually Facebook,  but someone posting on it. I usually just roll my eyes and move on, but sometimes I forget that this is the internet and try to explain to people why their words might be misconstrued as offensive, or why in fact they are being a dickhead. In fact, to save you reading further: TLDR; don’t be a dickhead.

However, for the more literary…

Just a quick reminder of standards for talking to, about, or around those with disabilities  (and like ninjas, you won’t always be aware of our presence):

– The “at least you’re not that person” style of motivation speech is not well received when done in front of that person. That speech is best described as a clusterfuck.

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– we are wheelchair users. Not wheelchair bound. Not in public anyway… don’t Google it. Unless you’re into that kind of thing.

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– on a similar note, I can call me a cripple as can my disabled friends. It’s our word.  Only a ginger can call another ginger ginger?

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– if I call you out for being ableist and you are not disabled, you don’t get to tell me that all disabled people would agree with you. Because one just didn’t. That’s not activism, that’s maths. Let’s be honest, If I call you out on it, I’m probably going to be nicer about it than half of Twitter. I won’t even c bomb you the first time😉

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Now watch Stella. Go on. Off you go.

On Whether To Support The #JuniorDoctorsStrike

Tuesday 26th April will see one of the largest doctors strikes in living memory in the UK. And of course, the evening prior is the perfect time for my knee to slip out. (It’s been bothering me all day, then in bed I looked down and thought “bollocks. That kneecap isn’t meant to be there.”)

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Of course, faced with a trip to A&E on the eve of a doctor’s strike,  I mused over whether the vague inconvenience to me was worth having a grump about…

On the face of it, this seems a simple issue. The politicians saw data that shows people are more likely to die if they go to hospital at the weekend : solution – a 7 day NHS where there are no ‘down days’. To create this, junior doctor contracts are being changed to require them to work shifts covering 24 / 7 available care. Doctors are not pleased by this.

But what about the finer points of what’s being played out?

Firstly, what is a junior doctor? That’s not age or longevity – a junior doctor is anyone who isn’t a specialist consultant or GP.

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More people die when admitted to hospital at the weekend.
My inner mathematician loves this argument. It’s like giving a Bible to Tim Minchin; nothing good will come of this, but it’ll be funny to watch from the sidelines.
Now stats can prove anything. Using this most basic of correlation vs. causation argument,  we could argue that shark attacks cause people to eat ice cream. People eat more ice-cream in better weather. They also swim in the sea. By being in the sea, there is a higher risk of shark attack. There is a correlation in the data, but one does not cause the other. Using the same logic, it may be that people who go to hospital at the weekend are already more unwell, or that people put off going until the weekend, or that the injuries caused at the weekend are more life threatening, or indeed that hospitals are more dangerous to enter at the weekend. Without the relevant data analysis, all we can infer is that there is a correlation of data between it being the weekend & mortality rates.

There are fewer doctors working longer to cover the shortfall
Right now, doctors already work 7 days. Yeah, ok, it might not feel like it when we’re playing GP appointment roulette at 8am, but when their funding is based on a numbers game & appointments must be “made available within 24 hours”, if you’re that unlucky bastard that is on hold for 40 minutes & there’s no appointments left, you’re not part of the all hallowed waiting time statistics. Not so long ago, Mr Hunt himself took his child to A&E for neither an accident or emergency as he had no desire to wait patiently.

Hospitals are falling into debt left, right, & centre due to mounting private contracts and the staff are told there just isn’t the money to keep going. (For the record, public sector workers have seen little more than a 1% pay rise in over 4 years compared to the 11% the politicians awarded themselves last year).

The Contracts Are Not Safe?
There’s a lot of misinformation being whirled about in the press. One message that isn’t very clear from the doctors is that the contracts they aren’t happy about include some rather worrying adjustments to working conditions. So far, the BMA (British Medical Association) have been negotiating for:

no doctor to work more than 72 hours in a week; With an EU working directive of no more than 48 hours, how is the government demanding more than 72?

no more than four nights in a week on-call; This would be in line with most private industry. We’re all perfectly aware of the strain shift work puts on people. The proof of this is the special consideration given to MPS working past 7.30pm, or on Saturdays.

a rest day either side of nights before starting back on day shifts;  Again, a similar shift pattern to private industry where the physical and mental toll of shift work is considered.

facilities to sleep-in for those who otherwise make a dangerous long drive home; Not often something that is provided for others, but clearly not a bad idea to prevent extra emergency patients.

So far, this doesn’t appear to be anyone asking for a “cushy number”. And a working week of less than 72 hours for £23 – £45k seems quite reasonable. Especially when making a mistake might actually kill someone.

And possibly here’s the crux of it. Doctors are generally paid above the national average wage. And we Brits do love a stereotype to rage at. Some genuine comments I’ve heard:  “Why are they complaining? They earn enough!” – are we suggesting there should be Tesco Value X-rays? Essentials stitches? Everyday Value apendectomies? If we hate everyone that earns more than us, why are we not lynching the footballers? The politicians? Pretty much anyone who works in the investment banking sector? It’s not a race to the bottom. Just because someone else’s job is worse, we shouldn’t lower the bar!

“They don’t live in the real world. Private workers do shift work.” – and they do, however when you suggest The real World is a factory as opposed to fixing a bleeding human I’m not wholly sure you’re right. What doctors (nurses, physios, etc) do is very real indeed. In fact so real that it’s best not to think about it.

I’m very open that it took me many years to be diagnosed with my own chronic illness, and my diagnosis came too late. By the time we realised what it was, I had dislocated & subluxed so many times that my nerves were trashed. I could easily rage against the NHS, but do you know what?
It wasn’t their fault that my GPs only had 10 minutes at a time to discuss my rare condition.
It’s not their fault that the only specialist clinic has such a long waiting list right now that they have closed their doors.
It’s not their fault that they can’t provide long term physio.
The buck stops with the Minister For Health. With an appropriate funding structure & money not being wasted on private investment and gimmicks to make the government look good, treatment could have been available.

My personal view is that strikes don’t help matters. It’s too easy to use them as a stick against those trying to get their voice heard. Just like when you’re battling Voldemort, patience is required. And the ability to use the power of his own wand against him.

With that said, I’ve done my bit to lighten the load & physiotaped the hell out of my wonky kneecap. It can wait until their voices are heard. So my leg is coming out in support of the doctors. You do a good job of fixing people, but you need better PR people.

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A Wheelie Good Summer

I’ve not blogged for a while as I’ve been in a bit of a slump. The lack of outdoors has rather hit me this year & combined with missing my partner in crime and her tribe as the weather attempts to look vaguely like spring I’ve been having a bit of a pity party for 1.

Having always been a bit of an active family, finding myself sitting on the sidelines or being wheeled about on nice flat surfaces is immensely frustrating. And welcome to the conundrum that is knowing that I am immensely lucky to have Mr Geek to look after me whilst also being so frustrated at being left out & having no physical outlet for stress.

I’ve made peace with the idea of being in a wheelchair. My pelvis is shot & the nerve damage is clear. But the pain Management team gave me that tiny light at the end of the tunnel that with persistent physio there is the hope of improving my general pain levels and upper body. But ongoing physio isn’t a thing that’s on offer – it’s a case of being given ideas and doing it yourself. So off we went and found this!

Hiring was our initial thought, but with only a couple of places in the UK offering this, supply & demand means that prices are upwards of £125 ($180) per week. Erk! So, what about buying? …. an adult bike is usually a few hundred pounds…. oh. The curse of the disability markup strikes again.

So, what to do. Firstly, we start saving as much as we can. Secondly, my doctor has referred me to wheelchair services to ask for help with a manual rigid chair, and finally, swallow my pride & concerns and ask for help.

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https://www.gofundme.com/294kw344

If you’re reading this, I’d be so grateful if you’d consider sharing either this blog, or my link.

As always.
Sending much love into the ether that is the internet 💕

You aren’t my friend if you Light it Up Blue

I won’t speak for autistic people as a neurotypical person, but I’d like to share their own words.
From me, you are valued whatever your neuro ends with. My daughter was not something to be cured, or prevented. My sister-in-law is no less special – in fact, since diagnosis she has blossomed. Be accepting, not just aware.

The Caffeinated Autistic

Today is World Autism Day. Today, many people have participated in “Light it Up Blue”. I am not one of them.

Please do not misunderstand. I am not trying to ignore autism. I am not trying to say acknowledgment of autism and the move toward greater awareness is a bad thing.

But you are not my friend if you participate KNOWINGLY in an event that was created by an organization who portrays autistic people as burdens, who for a long time were very anti-vaccine in their rhetoric, who have filmed a then-member of their board talking about her thoughts about killing her autistic child and herself (but didn’t because her NT child needed her), and who silences autistic people, removing the very mention of us from our own stories, because clearly, portraying us as capable would ruin the image they are attempting to portray of us. This organization, of course…

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No Sex For US Please. We’re Disabled.

This time tomorrow night Mr Geek & I will be all tucked up in a our new bed. We waited for the sales,  then used the back payment for my PIP to buy an adjustable bed so I could raise my feet at night & sit up when needed. In order to do this, we had to by 2 single beds and have them fixed together with a bracket. Of course what this meant was were going from a double bed to a superking size (6ft wide).

We know that having an adjustable bed is going to make a massive difference to my (and consequently, his) quality of sleep. But this brought up 2 very interesting points:

1. Adjustable beds aren’t normal size in terms of length, so require “special” bedding. Of course, because it’s linked to disability, the price tag rockets. Being disabled is expensive. Even a clean sheet to sleep on costs more. This irks me.

2. People make assumptions about our relationship now.

“Why not just have them as single beds?”
“You should have single quilts, not king size. Then you have one each.”
“It’ll be nice having a bed to yourself. Then she won’t keep you awake when she’s having a bad night.”

All of this roughly being translated as “you’re not in a proper relationship where you have sex anymore”. Well more fool you bedding judges. We may have 2 single mattresses, but we have a giant duvet to share because being disabled doesn’t automatically stop your libido. Sure, we have to make adjustments – dislocating a hip during orgasm is a sure fire way to put of most partners. If anything, losing my and being in pain has created a stronger physical bond as we spend more timobilityme soothing aching muscles & bones with warm oil & stones. This requires nudity. And, well…

For those finding themselves sinking slowly into reduced mobility (or careering down like an out of control skydiver like I did), all is not lost in the boudoir department, but I’ve learnt a few things this past year.

If it isn’t comfortable, don’t do it.
You might have been able to reverse cowgirl with full yee ha’s last year, but if your body is complaining, you’re not going to.enjoy it. You shouldn’t ever feel compelled to do something that you don’t enjoy. If it’s not working for you, try something else.

Relearn how your body works
You’ve been presented with a body that stopped functioning as you expected it to. With such frequent subluxations,  I discovered that an orgasm in the wrong position landed me with my pelvis out & a pain flare through my back for days. So we went back to basics.
On your own, or together, investigate how things feel now. What I’m suggesting here is masturbation. There, I said it. It’s far more gentle than full penetration, and allows you to use mindfulness techniques where you are aware of where your body is as things start to feel nice.

Use props
Maybe not the ones you’re thinking of. I’m talking wedges and pillows here. Create your own special sexy nest where you’re not having to support yourself on painful joints. There are plenty of tips where a pillow is suggested under the hips – take this a step further by supporting anything that needs supporting. Gym ball… I’ll just leave that idea hanging there for you.

Massage isn’t just medicine
When we receive (and give) massage, the neurohormone dopamine is increased. This not only improves our mood, but makes us cope with pain easier. Relieving pain before even suggesting any other naked fun is a good plan in itself. Using trigger point massage (aka pressing on those painful muscle knots which are generally found around the shoulder & neck) stimulates the release of endorphins – the same hormone released during exercise. These not only help reduce pain now, but can continue having an effect for up to 48 hours. 
In addition to dopamine, our levels of serotonin are increased with massage, affecting our overall mood. With serotonin also known as “the live drug”, creating a scenario where we are relaxing and  feeling less pain will automatically predispose us to sexy time.

So there. Lessons learned for #TLDR
– only do stuff you want to do
– masturbate more
– use pillows
– massage more  in non-naughty areas
– oh, and make your bedroom a nice place to be

We bought the prettiest duvet set with butterflies on them! This is utterly unlike Mr Geek, but we (I) spend so much time in bed these days that we’re trying to make it as welcoming as possible. We both like purple,  so have gone for a white and purple theme for the room.

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Stock image of our bed set - I'll upload the real thing soon!

To finish this all off, I ordered a white butterfly lampshade and 3d stick on wall butterflies to go over the corner wall.

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I’ve never wanted a girly bedroom before, but we threw each other a curveball on this one. We’ve gone from a Marvel Hero duvet set to 3d butterflies. Maybe we’re finally growing up…

Sources : http://www.pacificcollege.edu/news/blog/2014/11/08/neurohormonal-effects-massage-therapy

It’s Going To Be Thunderous!

… or at least I hope it will.

Yesterday, brought some very exciting news that my last post had been featured on The Mighty – the online disability magazine. Cue several hours of not sleeping because I was excitedly clapping on twitter about this, then rich tea biscuits. Because, well, Twitter.

Today, continues in this over-excited vein with our Thunderclap Campaign nearing it’s end (3rd April) with a current 88% support rate and 4 days left to run. That’s 12 people I need to convince to pledge a (free!) support message via Twitter, Facebook, or Tumblr. This is technically easier said than done.

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The first day was very exciting with over 25% support, this went up for over 40% by day 3. But then it slowed. We’d run out of people to reach via our own social channels and had to let the campaign simmer over the next 2 weeks (you have 14 days to collect 100+ supporters). Things picked up again, the past few days, immensely so after a bulk email of our first ever newsletter for Expect Zebras. But I’m twitchy again. That feeling you get at the end of an Ebay bidding war where there’s just seconds left and you could lose that prized item if you don’t watch it like a hawk is there (can you just imagine what this is doing to my POTS?!).

So there we are. Whilst Mr Geek continues to talk the app into playing nicely with our database where I have been furiously adding chronic illnesses, their awareness colours, and lists of potential medications that people want to record, I am set the challenge for the day to get our Thunderclap 100% supported.

Would you help? Please??!

 

Why I’m A Z List X-men Character

Like all X-men, I have a back story. I have genetic mutations that make me special and ‘other’. I can’t freeze things, I’m not part-wolf, I don’t have lazer sight, and I can’t fly. I use a wheelchair,  but unlike Prof. X it’s controlled by a joystick and not my mind, although recently I’m starting to resemble him in the hair department.

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I spent my formative years chasing letters after my name. In fact I’d just started looking at the final frontier of a PhD when a whole new set of genetic mutation induced acronyms arrived in my life. My medical diagnoses are a series of strange acronyms that most people have never come across:

EDS – Ehlers Danlos Syndrome. A genetic mutation of collagen that makes me the Z list of X-men where my connective tissues such as ligaments, tendons, muscles & internal organs stretch further than they should and forget to stretch back causing daily joint dislocations or subluxations (partial dislocations), and slowing of gastric transit as stretchy insides means… yeah. Ew. Imagine Plastic Man’s ability to stretch, just without his ability to stretch back. Every dislocation makes that joint a little more loose and more liable to pop out again. An Adult has 206 bones; give or take adult bone fusions, that gives me 250 – 300 joints to play with daily.

My skin likes to get in on this action being velvety soft, but ultimately tearing or bruising at the slightest thing. There are times and places where this is not welcome! It’s like being the anti-Deadpool : beautiful skin & zero ability to heal.

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POTS – Postural Orthostatic Tachycardia Syndrome. A form of dysautonomia which is a neurological condition where your autonomic system (which controls things like heart rate, digestion, body temperature etc) goes haywire; POTS means my heart rate rises 30 beats or more from laying down to standing, or sometimes even just sitting. The result of this is a lack of oxygen to the brain and ultimately fainting. This isn’t fun when you’re the teacher and you wake up to a class of kids terrified that they’ve actually killed you. This happened twice this term. My teaching days are numbered.

POTS also comes with heat, exercise, and often food intolerance. Any of these can make symptoms of palpitations, dizziness & nausea worse. This means my arch nemisis is a hot bath or shower.

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CRPS – Let’s save the best til last.
There’s a pain scale that suggests that unplanned childbirth hurts a little more than amputation of a finger without anaesthesia. Apparently a CRPS flare rates higher than this.
The daily subluxations of my Sacroiliac (SI) joints

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(which is the bit of the pelvis that isn’t meant to move!) triggered a neural pain response that hurts worse than any dislocation I’ve had.

My CRPS flares are focused around my pelvis and at their worst feel like those laser eyes I don’t have are inside me and burning my bones. White hot lightening goes down my legs and I flip from begging my husband to massage them to not being able to bear him breathing on my skin. I can throw all manner of drugs at this, including the anti-epilepsy drugs that destroy your synapses (you’ll willingly give up a lot for this to go away), but the only thing that gets through a real flare is my TENS machine on a permanent low buzz.

So as mutants go, I’m a reasonably sucky superhero. But, despite, or perhaps because of all this chronic pain, I’m much tougher than I look. Alongside my husband, who’s also my carer, I’m carving out a new life for myself by developing an app for people with similar chronic conditions called Expect Zebras. I have the temper of Wolverine, the mental health of Harley Quinn, and apparently the pain tolerance of Deadpool.

A friend of mine describes me as Oracle. Who, with a former life as bat girl, doesn’t let her disability impact upon her being a top programmer / hacker & part of the suicide squad. If anything, she uses being pissed at having her independence snatched away as rocket fuel.

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I like her style. She looks like a woman with a tens machine & a lot of focused frustration.

I’m not bat girl anymore.

Holly is a mum to 2 mighty girls, a computer science teacher, programmer, and co-owner of Expect Zebras – The Chronic Condition App & Wristband. She’s learning to live with disability through EDS, POTS & CRPS. Some days more gracefully than others.

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