Why I Let My Daughter Dye Her Hair Pink (and blue and purple)

I’m riding the “bad parent” wave each time we go out this summer. TinyPants starts high school in September and at age 11 has asked for a number of things that I’ve agreed to despite parental tutting. Here’s why:

She’s always had a strong sense of identity and year 6 has contained some big knocks for her. Instead of the last year of primary school being a fanfare of goodbyes, she counted down the days until she could be rid of bitchy cliques & a head teacher that she openly hated (strong words, but she had big boots to fill & did little to endear herself), and then there were SATS.

Since September, everything was building up to these bloody exams. Art, music, creative writing, science – all the things that made TinyPants love school went by the wayside. Maths drills, spellings, & exam papers were the daily grind – after which there were hours of tearful homework.

“Do your best & we’ll be as proud as always” we kept telling her. In the end, she sat in pain for 4 solid days doing her best (she was allowed to get up frequently, but allowed no extra time. Fearful that she wouldn’t finish, she didn’t take breaks. By day 4, she had a roll of physio tape strapped to her). Previous end of year reports have been a joy to read with comments given across the curriculum; this year one page was given with a table highlighted in red for each of the maths & english exams – “did not achieve”. The pass mark is 100, in most she scored 98 & in one 94. No “how I enjoyed my year” comment, but a “how could I have improved in my exams”. In contrast, her sister has a high school report with gold stars for effort & all subjects treated equally.

I was furious. My baby has fought past being born so tiny that she lived in an incubator; she fought apnea; she worked so hard to read (something that didn’t come naturally); she has emotional intelligence to rival most adults; she is a young carer; she has mentally prepared herself to be in daily physical pain & smiles through it; she worked like stink to pass those exams and yet she was deemed insufficient by a margin of 2 marks. She didn’t see how close she was – she saw “failure”. The piece of my mind that I’d like to give Gove, Morgan, & Greening may leave me without a mind. This narrowing of the curriculum and constant testing is stamping out the creative sparks that we’ll need in years to come.

So she asked to rebel, much like getting a statement haircut after a big break up. Step 1 was pink hair and I agreed to dye it for the final day. Step 2 was leaving primary behind – I genuinely feared her going out in a blaze of verbal glory, but she took the high ground and walked out with her head high (mentally flipping the bird as she left). And that was that.

She’s using the summer to find herself & that includes strange hair colours. We’re watching a pre-highschool reinvention of herself & it’s fascinating. She’s ditched the little kid clothes for older, but sensible shirts & jeans. I’m watching me grow up from a distance, but with a lot more self-esteem! Yes, we’ll have to get busy with the Head & Shoulders to remove the colour before school starts (eye roll), but for these 6 weeks the girls are allowed to be their genuine selves, whoever that may be.

We’ve just got back from a week at Disneyland where she asked to ride ALL of the rollercoasters on hoiday. I feel sick letting her put her body through that kind of strain – she’s already in pain most days & her back is a big culprit. Ibuprofen, TENS, & physio tape already feature quite regularly. Now, I could insist that she protect her joints at all costs, but shit, what right do I have to sap the joy from her life? She knows that adult life is going to hurt, but the pair of us are adrenalin junkies. At her age & into my teens I rode the coasters, I rode horses, I cornered so hard on my motorbike I could pick daisies with my teeth. So each time she wanted to go on a gut wrenching ride off Mr Geek went & rode with her.

Did it kill her? No. Ok, near the end of the holiday Mr Geek had to carry her out of bed & she gained wheels just like mum for part of the day as she couldn’t stand. Most days we paced quite well, the day before we’d thrown caution to the wind, but had the “best day evaar”.

Hell, even I rode a coaster – Mr Geek scoped it out and made sure it had head & back supports, I spent the previous day resting, he lifted me in – I screamed for the entire ride (on which my kneecap moved completely out & I pulled out both shoulders) – he lifted me back out & helped me pop things back, soothed the muscle spasms, then I rested for two days. All that pain for just 5 minutes? Yes. Totally worth it for feeling alive for just a while.

TinyPants looks at me and knows what’s coming – right now she wants to live as much life as possible instead of snatching 5 minutes of flying.

So, yes I’m letting her dye her hair far earlier than I ever thought I would, but it’s a small price to pay for the catharsis that its brought her. And as for Beanpole, well there’s no hair dye there – her genuie self blossomed at high school and my meganerd is blossoming into the intellectual fangirl that I expected, but she deserves a post all of her own.

Note: I’ve spoken a lot about pain here – for more info on Ehlers Danlos Syndrome, please read this post.

The Cult of Curls

A million years ago when I first started trying no poo it was all about being a bit of a hippy and frankly it all failed. But I never really let go of the idea that shampoo was turning me into a fraggle.

I’ve always had incredibly thick & wavy hair and equally not wholly known what to do with it. Even my good hair days were an example of why curling tongs are probably best left for professionals  (also, I’ve been honing the unhinged academic look for some time)

Curling iron & frizz. But, I was celebrating my brain not my hair that day

Most days, my style was best described as “shut up, I can either keep the kids alive & expand my brain OR look like a princess. Not both”.

I love how this photo hides the fact I had just set light to the microwave!

Even so, my long & generally colourful hair was my trade mark. I spent my 20s with it flying free and frizzy or woven into coloured dreadlocks (welcome to early 2000’s punk / nu metal culture).

At their tamest, my dreads were brown & red. My favourites were the black & blue set.

Then I met with dysautonomia and my hair & I parted ways. Literally. No amount of bleach, or braiding, or spiking ever made it thinner, but 6 months of being unable to digest solid food and it came out in clumps. I was never brave enough to rock the skinhead look so I turned to the orthodox Jewish community groups who taught me how to wrap my head in a Tichel and I acquired a whole host of beautiful scarves to adorn my now tufty head.

Two years down the line and solid food is back, albeit not all the time, alongside a constant massive dose of vitamin D and what once was thick & wavy has grown back thicker & curly!

What am I meant to do with this?! (2 months into CG, but unaware silicone had snuck into my conditioner – chemistry lessons kids : pay attention)

So, at a loss of what to do with hair that seemed to be growing out instead of down I rediscovered the no poo thing, this time through the Curly Girl Method. I’ve gone full circle & now jumped down the rabbit hole of curly hair…

This time, instead of baking soda & ACV (apple cider vinegar), I’m opting for “low poo” which means no products containing silicone, washing once per week max, leave in conditioners, and alcohol free gel “casts”. With this method I don’t smell like a chip & my hair is in amazing condition. I’ve also learnt a whole new vocabulary:

Squish to Condish 

The act of conditioning once, then scrunching the ends of your curls with a second conditioner application that you may or may not rinse out. I do, but those with really porous hair may not.

Plopping

I know it’s no poo, but ew! Actually, this is the theory that drying curly hair with a normal towel damages the curl & encourages frizz. Instead, plop your head onto tshirt material or similar to allow the curls to dry whilst coiled close of the head. Some people plop for 20 minutes, whilst others (including me) plop all night.

This is where having worn tichels for months has come in handy as I’m a dab hand at a secure turban! 

Just remember that post-plop the curls won’t be bone dry so you need to give them time to reach full crunch before scrunching.

Curl Activator 

I use Cantu Cream activator, or ahem… ummm… personal lubricant. (That’s a whole other blog post, but trust me it works wonders). It’s basically an extra moisturiser for your curls that encourages them to coil into their natural pattern and stops frizz. Stick it on your newly washed hair before any gel.

Praying Hands

A technique for applying curl cream or gel with flat hands instead of scrunching or raking it through. You also rub hands together first to spread out the goop & put it on more evenly.

Scrunch Out The Crunch #SOTC

So, after you’ve low poo washed your hair, added curl activator, added gel with praying hands, then plopped and diffused / air dried, it’s time to scrunch out the crunch.

Remember in the 80s & 90s when we all had spiral perms and wet look gel? Well as much as we thought we looked the dogs dangley bits, we didn’t. To get rid of that late 80s Minogue look, you need to SOTC.

Kylie wasn’t scrunching out the crunch …

Once your curls have dried to crispy perfection (not a trace of damp left), the gel will have created a “cast”. Now is the time to use your hands, or preferably a tshirt to scrunch each section and break down the gel cast to reveal soft & defined curls.

So, 7 months into low poo and 4 months into using the Curly Girl Method what does my natural hair look like?

When I say natural, the colour isn't included! Although I'm a redhead in my soul.

It looks like I have curls! And “bad” hair days aren’t really a thing anymore.

This works so well with my general health because I have no more fighting with hairbrushes, only need the energy to wash it once each week, and I don’t have to be physically that functional I’m. The morning. Getting ready consists of: take off my scarf, spray a bit of water/conditioner mix into my hair, scrunch it, bobby clip the front & off I go.

You can read more about the official Curly Girl Method here. (Not an advert, but as it’s not my method, you should hear from the originator!).

Working 9 to 5… and 6, and 7

Teaching is less of a job than a calling. It’s in our bones. We just can’t help ourselves.

This year I made the momentous decision to join the other 50’000 UK teachers who left in 2015 in stepping down as a full time secondary school teacher. Over the past two years, I’ve done that job on wheels and through a lot of painkillers, but in the end it wasn’t my crappy health that sealed the deal. 

I’m not actually leaving teaching. Instead, I’m moving to pastures new where the only grazers are sixth form students, retaining a very part time role in my current place, and offering online private tuition. It may seem bizarre to leave one full time sensible job to combine part time roles, but hear me out:

  • My sixth form teaching is the highlight of my day. But my subject is niche & in its infancy at my new college so whilst I build my little empire of nerds, hours are reduced. A Level Computer Science students challenge me mentally and I love seeing them fan the first flickers of a flame that grows to so many of them ending up in the industry, or at Uni studying the subject I love.
  • Leaving my current school is bittersweet. Here, I have friends, comrades, family. There are many things that try my patience to the bitter end, but parting was such sweet sorrow that I couldn’t leave completely. 
  • Private tuition brings a whole new dynamic to my teaching skills. In some respects it’s much easier than classroom teaching as there’s no rushing around dividing your time, or dealing with behaviour issues, and you get to develop a strong working relationship with tutees that is difficult in large classes. On the other hand, it’s much harder as you are giving constant input – there’s no quiet purposeful practice when “on the clock”, and many students who come to you as a tutor are there because they’re not keeping up for one reason or another. The stakes are high, but the rewards are enormous.

So that leaves me in a bit of a pickle for now. I’m winding down my full time role, whilst also not winding down at all as there’s still 7 weeks left to go, I’m preparing for my new role in September, and I’m already knee deep in online tutees in the evenings and weekends so I can hit the ground running (or wheeling) in September.

I’m exhausted. But therun up to the big jump to a new Lilly pad is an awful lot of fun.

So, for now you can find me here: www.TeachAllAboutIT.uk doing my thing & quite literally teaching Computer Science to the world!

Our Spa Day on Wheels : Amida Spa Review

What could be more romantic & simple for Valentine’s than booking a spa day & massage with your wife? Now add into the mix that your wife is a wheelchair user, she’s in chronic pain, wants to feel “normal”, and just for good measure once she takes her hearing aids out she can’t hear you (she might suggest that’s a bonus). Put bluntly, I’m a royal pain in the arse to whisk away on a romantic break.

(Note: these are not my photos- they are from the spa website. It’s against the rules, and just a bit creepy to take photos!)

The Amida Spa in Farnham came pretty close to ticking all of my boxes though. The whole place aside from the extra seating area is on one floor with level access, there is a nice & well equipped accessible changing room, it’s quiet, all the pools have steps in so I could bum shuffle in & out.

So without further ado, 10 steps to chill out the stressed wife:

1. Book a couples massage.

A treatments room showing dual massage beds

We both had a back & shoulder massage tailored to our stress levels / probability of limbs falling off. I pre-warned the already nervy masseuse that I needed to lipread & to tap me if needed. The Brits aren’t good at this – despite having oiled me up & untwisted my knots for 30 minutes, she was very uncomfortable about tapping my shoulder. For reference: It’s really hard to lipread when you speak slowly & nod. I’m deaf, not a dog.
2. Eat a nice lunch.

We were starving, so we went to the champagne bar for lunch. Unfortunately the “fresh made sandwiches” were premixed so I couldn’t eat any (the irony was not lost). Cue scones for lunch. Meh. Good excuse for cake.
3. The Tepidarium 

Three stone beds showing the tepidarium room in the spa

We’ve established over the years that my tolerance of cold is like my tolerance of people, in that it’s gone down at the same rate that my pain levels have gone up. I’ve essentially become a lizard, spending the colder months laying prone on warm things and only becoming animated once I’m suitably heated. And only really seen by others in the Summer.

With my lizard-like persona, the tepidarium with its heated stone beds was perfect. Like a recliner shaped night storage heater.Joint pain Nirvana.

4. Just keep swimming.

An inside infinity pool with handrail & steps into the water and lounger chairs surrounding the pool

There were actually more than two pools, but we stuck to the two warm ones. The hydrotherapy pool was outside, but once in the water it was toasty & boasted bubble beds, jet/ bubble chairs, massage jets, and 25m of warm water to swim in. It was very similar to the hydro pools that we visited in Germany and in another similarity was also a salt water pool. I was less keen on getting out as the cool 7° air had chilled the leather & metal on my wheelchair so the short trip from poolside to door was FREEZING.
Once inside, we warmed up with a dip in the infinity salt pool. At under 3ft deep, it’s not a swimming pool – more a floating pool. Both pools are in a special quiet area were you are encouraged to keep voices low & not disturb others. In the pool, Mr Geek & I signed to each other as I was without my hearing aids and he couldn’t be loud. It’s probably a good job we were signing as Mr Geek looked at me & said: “looks like a stingers place”. Cue infantile giggling.

We’ve clearly been watching too much channel 4.

5. Get Hot

We headed towards the saunas next. They have a number of different saunas with varying degrees of warmth. Despite my joint-achingly disagreement with being cold, I equally can’t deal with extremes of heat which set my heart rate through the roof. As such, we opted for the herbal sauna which ranged from 45°-65° (as opposed to 65°-85° for the others). I laid down flat as as precaution aside breathed in the lovely woody smell…5 minutes later & the world was spinning at which point Mr Geek rolled me into my chair & carted me out. Ah well, we tried.

We cooled down in the main area with our feet in cold foot spas next to the plunge pool.

The main area of the spa showing a floor to ceiling red fountain, a bank of stone seats with stone footbaths in front, and the wall hiding a plunge pool to the right

The plunge pool provided entertainment for the next 30 minutes as we watched a stream of men swagger up & I’m mere themselves in 1.5m deep icy cold water and instantly regret their decision as their testicles tried to jump to safety up through their body. 

6. The Salt Grotto

An entrance hall with a green chandelier and doors leading to the steam rooms

I was ready for a rest by now (Ikr – it sounds such hard work so far), so we headed to the steam rooms. The salt grotto is a steam room with a difference… in that it’s not steamy. It’s 30-35° mainly because the stone stealing is warmed – There are 2 walls with stone seats, and the third is a deeper seat set into the wall, almost like a double bed (not helping with the only going stingers giggling) – every so often salty mist infused with mint & lemon hisses into the room.
I actually found it thoroughly relaxing in there with the perfect combo of humidity & warm but not too warm. Mr Geek kept himself amused having found that the combo of we skin & humid romantic meant that by moving in a particular way he could make farty noises with his back. Who said romance was dead? 

7. More Steam Vicar?

I’d clearly not learnt my lesson with the sauna, because I suggested nipping into the Oriental Steam room. Lured in by the lovely smells radiating from the door, in under a minute Mr Geek was wheeling me back out. The word I was grasping for was syncope, but mumbled something about world going oozey… FOMO strikes again.

8. To Inifinity

After cooling back down, we went back to the infinity pool where I floated on my back ignoring the world until Mr Geek reminded me that we had to go & pick the kids up. By this point we had been hardcore relaxing for 4 hours. I could’ve done more. I hadn’t had a nap on the loungers yet…

9. The Change

The only downside of changing was the lockers being in the male or female changing rooms, and the accessible changing being in a room just off of reception. This meant poor Mr Geek had to collect our things and hobble pack horse style through reception in his rather too small robe. Because the shower & changing is in the same room, we decided to wait and shower at home rather than soak all of our things. Of course by the time we’d driven home, I was exhausted & just wanted to go to bed, then promptly spent the evening scratching my salty covered scalp.

In this case, accessibility was a bolt on thought of after the aesthetics of the spa. People don’t want to be reminded of physical limitations when surrounded by white leather sofas & proseco. 
10. Us Time

Ultimately, today was about spending time together which we did in our own unique way. We talked about all sorts, got lost on the way there (this is a ritual which must be followed), & found ways to make a perfectly grown up situation childish. My favourite bit was definately laying in the salt grotto jabbing Mr Geek for communicating to other trapped husbands through echoey fart noises.

So, pros & cons from our perspective?

Pros:

  • Warm pools with steps
  • Level access really was level everywhere
  • Massages adjusted to how you like them (light touch -> digging with elbows)
  • Staff really tried to help without being intrusive 
  • Everything in the whole place just forces you to RELAX
  • Mid heat salt grotto
  • Infinity pool is raised so easy to transfer in & out
  • Comfy seating everywhere, but arranged so that walkways aren’t cluttered
  • Water fountains located throughout & a free lemon water dispenser is in the bar, so easy to stay hydrated.
  • Can eat in Robe – not having to constantly dress & undress helps conserve energy 

Cons

  • No pool hoists, so Mr Geek was lifting me a lot
  • Unexpected entry fee not mentioned on gym website!
  • Only real accessible toilet is in reception – spa toilet is big enough for a wheelchair, but no bars.
  • Robes made for tiny people who eat only air – Mr Geek looked hilarious.
  • Internal doors are very heavy. Too heavy for me to open.
  • No T Loop at reception  (& main reception loop wasn’t working)

So overall, a lovely day. It’s not built with accessibility in mind, so of course there will be niggles. But with this in mind, they’ve done a great job of building a really nice spa and I thoroughly intend to go back at some point! 

For now though, I need a nap.

No Poo Attempt Two

A few years ago I tried going “No Poo” (shampoo, not poo) in some weird experiment where I gave up shampoo for lent. I used baking soda to wash & vinegar to condition my hair.

I smelt like a chip.

My 2nd attempt is a bit different. I’m following the curly girl method which is based on a book by Lorraine Massey and I’m actually 4 weeks into my new experiment. It’s based on actually conditioning curly hair over washing it to destruction and getting rid of all silicone & alcohols.

Since my hair decided to fall out & grow back, the wave has turned into a curl & fierce frizz, so I decided to tame it and whoa nelly! This is actually working.

Ok, I’m sporting the knackered look here, but I’m so good at that recently. However, this was my pre-curlygirl hair using just a spray gel.

Now, my 11pm messy hair after 4 weeks. (Someone needs to remember to take a photo during the day!)

The fear of returning to feeling like a chip is widely over as I have a set routine of detangling & co-washing once or twice a week with Tresemme Botanique conditioner and a 1p size of the shampoo if we’ve been swimming. It’s really hard to find a silicone free shampoo in the UK, but I’ve lucked out with these. After washing, and each morning after dampening with water from a spray bottle, my curls are spritzed up with Tresemme Make Waves spray gel, scrunched and left alone to go crispy. Just before I head off for work, I SOTC (scrunch out the crunch) – essentially, the curls have set now, so squishing the gel makes the curls softer now they’ve set. Note the lack of brushing; with set curls, nothing gets tangled so I only detangle before I wash. The longer I leave it, the more corkscrew my curls get!

So, here I am, growing back my locks but this time in delicious spirals that make looking after it a million times easier.

A Generational Pivot Point… or is it?

Every generation has defining moments when everything is brought into sharp focus and speaking your mind comes bundled with the threat of a backlash from those seeking to silence your freedom of thought. 

For my parents it was the wars fought in Vietnam & Korea. My Dad missed conscription by a year. Both he & my mum were hippies & pacifists. They personified the 60s and I love trawling through the photos they kept seeing these people that existed before I remember them as adults.

My grandparents, it was WWII – my paternal Grandfather was in the Canadian Army deployed in Italy (then France), shot three times and like the black knight still suggested he was up for more. Tough as old boots, he lived into his mid-90s out in Canada. My maternal Grandfather was in the British Navy in the South Pacific. They both fought against fascism and returned with physical & mental scars. My maternal grandfather died shortly after due to cancer caused by radiation from Naval experiments. I have a personal beef with Von Neumann.

My great grandparents differed. My maternal Nanny spent so many hours telling me about living through the WWII Blitz in London, and before that working during WWI when my great-grandfather was in the British Navy. She saw women given the vote when she was 26 (1928). in contrast, my paternal Great-Grandparents were farmers in Alberta, Canada having arrived there a generation earlier after fleeing Germany and walking (yes, walking ) across Siberia. I never met them, but seeing photos as an adult, my Great-grandmother looked just how I imagined her as a child outside her hand built log cabin. 


As for us, Mr Geek & I were born in & remained in the UK to reasonably affluent parents who had long since hung up their flares & gogo boots. We were born as Citizens of Europe and comfortably grew up embracing other cultures whilst feeling a bit sheepish about the behaviour of some of our more stereotypical ‘Brits Abroad’. We embraced ‘alternative’ as a longer than technically necessary rebellion with our massive baggy jeans with chains, coloured mohawks, nylon dreadlocks, and more eyeliner than an Ancient Egyptian. We were comfortable just being ourselves. Then a chain of events led up to the worst family conversation of my lifetime:

“I think I’d prefer not to know and if the bomb drops to think, oh light. Then gone.”

“Agreed. I wouldn’t want to live through that. Or worse, live through it and be ruled by Trump.”

… and I just sat listening with that rising feeling of panic you get when you think your children are in danger…

So what pivotal moments turned that purple haired rocker into a muted mother terrified of the actions of a man the other side of the world?

As kids the word terrorist was familiar – the IRA were regularly planting bombs (one of which blew up 15 miles up the road). In 1998 a peace agreement was signed and people carried on. Incidents like the nail bombs that went off in brick lane, London in 1999 hinted at a Far Right terrorist movement rebelling against the authorities tackling internal racism and were treated with disdain. Concurrent life sentences were handed out and life settled as politics became more centred on society. Organisations like Sure Start were created to help struggling parents fulfil their desire to be productive parents, a minimum wage was enforced, government assistance started to help those in work to combat poverty…

2001 – 9/11 happened (or 11/9 over here). Suddenly the US were involved and after gathering ourselves from seeing horrific sights just unfolding on what felt like every screen in the world, everyone held their breath waiting for retaliation. We didn’t have to wait long.

2004 – Beanpole arrived. At 24 I’m regularly using crutches for “SPD that never went away after pregnancy” (yep, that happens *insert sarcasm*). I literally didn’t know which end was which, but this tiny 5lb little thing was now the centre of my universe.

2005 – A most excellent wedding (can you tell I’m 4 months pregnant ?). Mr Geek looks so young! TBF we were – he was 23 here & a lady never reveals her age.

2006 – TinyPants arrives in spectacular style waaaay too early & refuses to acknowledge that she has to breathe for herself. It’s just too much effort, so spends the next 6 months traumatising us. We continue to just be us, but with tiny rockers with us.

2007 – Sophie Lancaster was murdered by teenagers in a park she was walking through with her boyfriend. Even now, I can’t go back over what they did, but they were attacked for looking different. For looking like we did. She was 6 years younger than me.

We were settled into our own house by now with an ever expanding broods between us & the GypsyTrees. This was my favourite time of all.

2008 – The Credit Crunch TM. Somehow the banks lost most of their money & everyone looked a bit shocked when it wasn’t down the back of the sofa. The banks weren’t keen on paying for it, so convinced the government that they’d have to pick up the tab… meanwhile, Iceland who maybe possibly lost all the country’s money wiped the date clean by firing it’s government, cancelling all debts of everyone in the whole country and starting again. (Fast forward & who’s still in austerity? It’s not the people with fish money)

My first outing in a wheelchair. More often using my funky stick when things get too much. (I’d not realised until I looked back at photos that the stick appeared so early.)

2014 – Gamergate started. (Why? Because an ex boyfriend wanted revenge on the woman who’d moved on). It wasn’t exactly new, but the ferocity of people online suddenly increased. By this point, I’d been playing regularly online for over a decade. Men posting their genitals online was nothing new – if anything, it was boring. But there was a shift in the tone. I started playing male characters outside of my known & safe guild.

2016 – There ought to be a room 101 for this year, but here goes. Leaving all the celebrity deaths aside just for now: The UK voted to leave the EU against the advice of all financial & political experts because the then Prime Minister used it as a vote winner to get elected. Once the vote went horribly wrong for him, he promptly resigned and scuttled off vacs to his wealthy family leaving a leadership contest between a woman who complained people were being mean to her, a man claiming that prayer cures gayness, an ex education minister who most teachers would eagerly be left alone with a hot poker for 10 minutes with, a floppy haired buffoon who’s lifetime achievement was getting stuck on a zip wire, and Little Red Riding Hood’s Granny post Wolf transformation. One by one they stood down after realising that they weren’t actually fit to run to the shops let alone run a country, until just Wolf Granny was left; our currency crashed (further); The political opposition ate itself and became defunct; Then the US voted in Trump.

At which point the whole of the world turned around at America and made this face:

So here we are. It could so easily be a message of doom & gloom, but as one year closes another opens and I remain infinitely hopeful that Trump will be nullified either by being such a tremendous twat that he impeaches himself or that the actual politicians will keep patting him on the head & remove his Twitter account. I’m hopeful that an effective treatment for EDS will be discovered and we can stop me (and so many others) falling apart. I’m hopeful that Brexit negotiating will take so long that it won’t be seen in my or my children’s lifetime (or, that EU opt in becomes a thing). I’m hopeful that I’ll still be working this time next year. I’m hopeful that Beanpole continues loving every second of school & TinyPants survives the SATS relatively unscathed (seriously year 6 teacher, keep telling her that her best isn’t good enough, see what happens…). I know we’ve lost so many special people this year, but in the words of one of them:

And with that, my survival rate for shitty times is 100% so far. Despite appearances , I seem to have a track record for surviving and if you’re reading this you have too. Let’s keep this up for 2017.


I Do Not Like Green Papers Ma’am. @PennyMordauntMP

This article from The Disability News Service is a pretty accurate reflection of the state of the UK right now.

Having openly disregarded out of hand the findings from the UN that they are guilty of “grave or systematic violations” of the human rights of disabled people, our government is looking into making anyone claiming disability benefits meet regularly with an “employment coach” (read careers advisors with powers to take away your money). Now whilst this has been presented as helping people with disabilities get back to work, this will apply to anyone who isn’t in an institution. Read people needing physical care at home, people suffering a mental health crisis, people in constant relentless pain. People who can’t always fight back.

As someone who is negotiating a reduction in hours to hang on to what physical & mental health that’s left, this is scary. The argument behind insisting that people with disabilities work is to give a purpose and improve mental health. Well my dear Tory MPs, let me give you some cold hard facts.
I love my job, but pushing through regardless has directly caused some very dark thoughts. And I am infinitely lucky to have the husband that I do because he listens every time I need to shout my frustrations at the world. Most people wouldn’t have the patience. (You, by the way, don’t deem him to be a carer despite dressing me every morning, helping me bathe, cooking for me, & cleaning. why? Because he does all of this AND holds down a successful job. Sounds fair, yes?)

Despite holding on by my fingernails, I work partially because I’m too scared that the state won’t catch me if let go.

A day of work leaves me with levels of pain that regular strong painkillers & morphine don’t touch. This is not “oh, take a nurofen & have a glass of wine”. This is unbearable pressure on my spine, deep bone pain in my joints to a level where without painkillers I’m physically sick. Now tell me how running your second home paid for out of Government coffers gives you a headache…

A day of work leaves me so exhausted that I can barely hold a conversation with my children. (I am eternally thankful for my husband & our parents who take care of the important kid stuff). 

Physical pain takes a mental toll. I’ve lived my life as a pacifist, but I wish every MP who thinks this is a great idea could live for a month with these daily pain levels. Of course, they’d need to carry on with their current lives because why should we be cut any slack? It does you good to be at work after all.

Since I went downhill 18 months ago, I’ve been asked on 4 separate occasions by government employees (DWP, Social Services, & Occupational health ) “do you think about killing yourself?”. Always matter of fact, like it’s a reasonable conclusion to draw because EDS doesn’t have a cure & no one knows how to effectively manage the pain. 

Putting aside the wholly inappropriate nature of assuming that someone with a disability would consider death preferable to their current situation  being permanent, the answer has always been no. Until I started trying to work through another physical dip this September. So here I am trying to negotiate putting my health & family before my job. Because, dear Tory MP, it’s not a job that gives me a reason for dragging my arse out of bed despite it hurting to breathe a good percentage of my days. It’s my family. I make a difference by bringing up two beautiful & well educated children. By growing old with my husband and reducing my financial burden on the NHS by taking care of my health.

You can try & strip away disabled people’s dignity in the name of austerity whilst you pander to large corporations who pay less tax than I do, but in the end you’ll be seen for exactly what you are. Hopefully by the general populous, but better still, I’d love to be wrong about the whole religion thing and see you meet God at the pearly gates and ask you directly, “DID YOU DO UNTO OTHERS….?”.
Note: I have started my official response to the green paper, but the form is so long and poorly worded that it is testing the limits of my speech to text. It’s almost as if they don’t want responses…