Doctor Doctor, I keep falling asleep

…during the only hour you can book appointments. Which is infuriating.

I tried booking an appointment through their app, but the next available one is 6th May. My current prescription will run out this weekend. Fuck.

This is the downside of setting GP practices targets on appointments – their solution to seeing people within 12 hours is to release all the appointments at 8am, deal with the stampede and if there are no appointments, well you haven’t booked one so you’re not part of the stats.

So why not just join the stampede? Well, because the screaming leg & hip pain has a lovely habit of showing up like a drunk ex at 1am and demanding I pay attention. This means that once I do get to sleep after electrocuting my pain into submission (TENS ftw, and sadly we don’t get to electrocute the ex) I’m generally unconscious from a combo of being exhausted and heavy opiates… 8am gently rolls past… 9am and I log on bleary-eyed to no appointments and a rising feeling of panic that I’m going to run out of my super-effective slow release painkillers & have to return to the boom & bust of 4 hourly doses.

Going back to work on Monday whilst in the current “shiteverythinghurts” phase is going to be a barrel of laughs. I’m still in the sleepy bunny stage of having swapped to slow release morphine instead of the massively wired state of the max dose of Dihydrocodeine. The change hasn’t stopped the pain, but I care less. My joint pain is way more stable, but the nerve pain from reducing the Gabapentin is like white hot needles in my thighs. Which is nice (said in my best Felicity Ward voice). CRPS is a pain in the arse, or legs in my case. Or top half of legs as my lower legs are numb (small mercies).

I’m not sure how many TENS pads you can put on at once, but let’s give it a go!

Wish me luck gor the 8am syampede I have an alam set (& 5 1/2 hours to get some sleep!).

Night night x

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No Pain, No… Erm…

I think the phrase is “what doesn’t kill you…”

This week has been a bit of a shitstorm that I’ve put a brave face on. After having a ‘moment’ on Tuesday (read on) I’ve been asked a million times if I’m ok. “Oh, I’m fine!” or “it is what it is”. In truth, it frightened the life out of me.

I’d had a migraine on & off since last Friday. Sumatriptan was keeing it at bay, but every few hours it popped back to say Hi & stab me in the face along with feeling whoosy & jittery. A stressful week was hitting a bit of a high (it’s coursework deadline week) and I popped off to the loo before lunchtime club. As I transferred back to my chair everything went dark & I hit the deck.

So here I am crumpled on the floor of the toilet at work with a whoozy head and, oh fuck, a leg sticking out at a right angle. So I pulled the emergency cord & waited for the cavalry.

I could turn this into a long story about our poor first aider helping me snap things back into place, an ambulance being called, sitting on a toilet foor wondering what the hell just happened, but that’s not what threw me. Part of the ambulance being called was them doing the standard blood pressure and pulse checks. You’d expect my blood pressure to be a bit raised what with trying to remove my leg and being surrounded by buzzing people who I couldn’t hear properly. What you wouldn’t expect us for them to make that raised eyebrow face at each other, take my pulse on a different wrist, wince and explain carefully that I had an irregular pulse.

After being helped up onto my chair & being stabbed a few times to get an IV line in (I have no veins – he dug around for a good few minutes & I didn’t even bleed!), we headed downstairs to the ambulance where I was hooked up to an ECG. They look scary, but apart from being a bit sticky they’re fine. So out pops the first print out…

… Let’s do another…. And another… The readings are “weird” (their words)…

… The paramedics start talking over my head about Ts & Vs and mitral regurgitation… I explain clearly that I can’t hear them properly. They take one more reading and the paramedic asks me how much pain I’m really in. “It’s not that bad” (it’s a good 7/10). Then he hit me with the line that’s been whirling around since. “You need to stop being brave so we know whether these readings are intense pain, or a heart problem, or both”

How do you explain that the only way to deal with constant pain is to employ a degree of denial, and when a combination of a major dislocation, exhaustion, and another bollocking migraine hits meadured breathing and stepping out of my body is the only way to cope. You might see me joking with you, but I’m watching from a safe distance.

The decision is made that I need to go and play musical trollies in A&E, so I head off in the ambulance with Mr Geek following.

Several hours in a converted cupboard (stretched NHS in action, it was an actual cupboard that had been converted to accommodate more beds) amd I’ve had another ECG & an xray. They attempted to take blood, but my veins were having none of it so they gave up. Even the cannula in my hand had collapsed. Vampires be warned. I’m cleared to go home with referrals. Mr Geek pops out to get my chair & lovely dr comes in to make sure I understand that cardiology will be in touch about the mitral valve prolapse and to make sure I ask fracture clinic for physio. Despite being terribly busy, she was so distressed that I don’t have a regular consultabt overseeing everything. I’m on their books, but what can they do? I have a lovely GP and that means I just get on 90% of the time.

… 2 days later, I’ve jollied up and brushed off the “are you ok?”s. My knee is braced and every time I get palpitations from sitting up ‘mitral valve prolapse’ rings in my ears. Just for reference, when you get a thing that you don’t wholly understabd, don’t google it. Especially when the self care for it is to be calm!

In very non-medical terms, it’s where the valve that stops the blood from being pumped out of your heart allows it to leak back in making it less efficient and causing a traffic jam. I’m basicallyb running on a procedural paradigm where I was in object oriented.

So, the reduced caffeine version of me remains a bit headachey & whoosy and has a very sore knee. With adrenal dysfunction and an enourmously dysfunctional family, it’s a full time mission to remain calm so I’m cracking open the Headspace app and Podbean app every five minutes.

From what I can gather, conservative treatment is to reduce caffeine, calm the fuck down, and monitor the levels of reguritation.

Blood pressure & heart rate regulation drugs can be employed and of course there’s the oh so helpful complications list of heart damage, lung damage, starving the brain of oxygen (do not google!)

Of course this whole thing creates a catch 22 where the symptoms are mild chest pain and an awareness of the heartbeat, but you are aware of them because you’ve been told (chest pain is GERD, but mimicks scary chest pain). If nothing else, I’m seeing my lovely GP on Saturday and I can offload my worries there and I can return to denial. He’ll likely agree that being a whirlwind of stress and caffeine over btec exams probably wasn’t my smartest move and to get cardiology to just keep an eye.

So no, not so “fine”, but not in a place to talk in person about it yet.

Just as a side note for anyone in the US reading who wonders how much that little incident cost. To me, nothing. A little extra tax is paid and I was treated based on my symptoms, not my insurance. Sort yourselves out. Social Healthcare works. It’s not perfect, but what is?

Sleep is For The Weak

I watched an interesting and yet terrifying documentary on Netflix today called Take Your Pills. If you’ve not watched it, please do. It’s a worrying window into how kids cope with the academic pressures ladled onto them. There were also so many ambitious adults on there who are taking Adderall to stop burnout. Some had progressed to taking low doses of LSD, with stories of people in their 30s having exhaustion induced seizures and being called / emailed at the hospital for work they hadn’t finished.

(For point of reference Adderall is an ADHD drug similar to ritalin – both are amphetamines, but adderall is closer to methamphetamine)

Ironically, here was me watching this in bed in my pyjamas at 10am on a Wednesday morning. I’ve worked every day for the past 14 days and by Tuesday morning found myself wrapped in a blanket at 7am staring into my mirror instead of getting ready for work, after another “fun 4 hour sleep” unable to put makeup on because I was so tired & woozy. Technically I should have called then, but I felt too guilty to call in sick. My pain levels exhaust me, but I don’t want to “use them as an excuse” – the internalised ableism is almost audible around me at times like this.

As my workload went up, so did my pain levels amd my ability to cope dropped – I already have a heafty painkiller routine, but the morphine levels have risen recently. I had a bit of a stark awakening when just before a stream on Monday my shoulder popped out (fully dislocated with a torn muscle). Mr Geek returned the joint to it’s rightful place & I asked for “some morphine please”. This sparked much hilarity from my friends on camera who witnessed a totally calm woman politely request strong narcotics. From most people I’d get upset, except I know they intrinsically get this pain threshold thing – I don’t scream & wail because I’m not scared. It hurts like a motherfucker & still does, but I know why and how to solve it, and precisely how bad it will get. Staying calm stops my muscles going into spasm & helps the joint back in. Much love to Jo & her meditation techniques for this.

Anyway, knackered lots of pain etc. so in bed on my “day off” before tutoring starts. It occured to me that I was utterly confused by the concept of not being able to focus – these people wanted to push through the tired & work faster, longer, better. And were using amphetamines to do it. They are literally taking drugs to have the unpleasant side effect of my adrenal dysfunction. WTH?!

I made a list of things I’ve achieved over the past 7 days to show the effects of skidding through life in constant fight or flight:

7 days of stuff I’ve done

Learnt how to code with basic Unity & Cardboard VR

Made & released a simulation App for my department’s charity den (go look & download to raise money for our local homeless shelter!)

Written a draft short campaign for the roleplaying group I play with (3000 words & counting) based around Tudor / Medieval Sussex folklore.

Created ink drawings for a couple of characters.

Scruffy witch with long teeth stands holding a fish

Ginny Greenteeth – river hag, notorious for dragging people into water.

Joined in 2 roleplaying streams totalling a collective 6 hours (no regrets!)

They’re not on YouTube yet, here’s one we made earlier!

https://youtu.be/YcDgJos28sE

Created an ink drawing of one of the characters from our game stream.

Drawibg of a Young man in a long coat running with a flaming torch in one hand and a dagger in the other

Lamb the SaltGypsy from our Salt & Thirst Campaign with BloodThirsty Puppets

Worked at my teaching job for 32 hours + a few evenings of marking

12 hours of online tutoring

And a blog post.

….

Now in a list, I looked at that and thought “wow! I’m a fucking superhero!”. No brain, you are not. You are skimming years off of your life by not slowing down even when limbs are literally falling off and you’re crying from being tired. What my brain is failing to mention is:

The sketching is done at 1am when I can’t sleep because my CRPS is playing up & my leg feels like its on fire

Much of the middle of the night suddenly awake cold swears stuff is due to panic dreams where I can’t escape from a fire. Subconsciously I know this is because the alarms broke on Friday & we’re just waiting for an engineer & there’s a plan in place, but I don’t like feeling vunerable & not in control. Being nervous = extra adrenalin.

The streaming is my socialising. I do this from bed because sitting in a chair is too painful after work. I’d rather cut a boob off than not join in.

Same goes for tutoring. Big pile of pillows in bed. I enjoy it & it’s paying for the holiday which the girls & Mr Geek deserve so much after giving up life to accomodate me all year.

I loved creating the app, but the all consuming fear that I’d let people down if it wasn’t done meant that by Sunday morning I was covered in hives (I still argue that it was worth it)

……………………………

So the brain & I had a serious talk having been placed into a salted bath by Mr Geek who now just looks at me like a concerned pet owner does at a cat that keeps pulling it’s fur out.

I can’t keep going where the adrenalin rush pushes me. I can’t shrug off every conversation where Mr Geek tells me to rest more and stop working, or at least saying yes to more work. I can’t survive on less than 25 hours sleep per week.

Something has to give, and with a leaky heart valve we’d rather it wasn’t that. Also, that’s not a very rock & roll way to go.

The brain needs to stop flooding me with adrenalin and I need to be sensible and take a few days off. I’ve cleared my diary for the whole 4 day Easter Weekend, much to the dismay of my tutees (downside of self-employed tutoring is they genuinely believe I’m on 24 hour call).

  • Even if it snows, we are going to a National Trust garden.
  • I’m going to sit in Mr Geek’s lap, tangled up together with all the tech off and read for pleasure
  • I’m going to paint with TinyPants on a hill.
  • I’m going to watch sharknado with beanpole

I’m writing this downas a line in the sand. As a very loud, but wise man who never followed his own advice once told me: 49% work / 51% family.

– work emails are no longer on my personal device

– My tutoring books are closed

– Working on a Sunday is now emergencies only

– Anything past 7pm needs to be completed from bed

That seems like a reasonable step towards not breaking my head.

What Keeps Me Going

I actually wrote this a week ago, but have been too knackered to proof-read & post it. So yeah, pretend you’re reading this a week ago… Or not. Same pills today.

“That’s a lot of pills!” exclaim my friends when I see them in the evening and they see me take my evening painkillers. This is true, but I’m held together by a lot more.

There’s a trend of people with chronic illness posting photis of their pills – although it may look like “sicker than thou” behaviour, it’s actually a response to people who see us functioning and berate others who don’t have the capacity and/or backup to do the same. This isn’t a positive attitude, or other such inspiration porn nonsense getting us through, it’s a shit load of pills, coping strategies, and people who carry us (sometimes literally). So let’s take a look at today as an example…

This morning started at 6am with a cup of coffee, overpowering nausea, and vitamins! Heart rate 56, blood pressure 86/62.

A hand with a variety of vitamin tablets

Due to the joys of Ehlers Danlos, I simply don’t digest or hold onto vitamins so need to take high doses to gain any effect. Other times, my stomach holds onto drugs for a few hours then digests them all of a sudden with the next dose. Because there’s nothing scarier than your stomach having a parasitic grudge against you. This morning contains:

  • Multivitamin with extra iron
  • Cod Liver Oil with glucosamine, both of which are good for joints, reduce inflamation, and tissue repair
  • High dose vitamin E to bolster immunity and improve circulation (useful for keeping POTS in check)
  • Evening Primrose Oil – because of lady things

Couple this lot with a naproxen to dull the aching and I was ready for breakfast. As usual, it’s a cinnamon pastry swirl thing which is basically the only thing I can eat in the morning without wanting to vomit.

Mr Geek gets me washed & dressed, then I can paint my face. Being over-tired at the weekend sparked off my rosacea, so beneath the foundation is a layer of Rozex – this stuff is miricle cream for rosacea in general, but it attacks the evil deep cysts that appear when nothing else does. It’s a mild antibiotic that restricts blood flow around the skin, sort of like acne cream but for inappropriate immune responses.

A hand hoding a used tube of Rozex cream

Cup of coffee #2 comes into work with me & raises my blood pressure higher than the previous undead level. HR 65, BP 102/73.

Work is a welcome distraction and despite feeling a bit overwhelmed right now with marking coming out of my ears, getting into some meaty project work took my mind off wanting to hurl. At the same time, I also kept sipping frim my bottle of diet coke which is another good way to settle stomachs…. And yes, I know diet Coke is the root of all evil, but I’m not being sick, so meh.

Lunchtime rolled around & I looked at my snack pasta & made a face, so opted for the bottle of slimfast in my bag. I’ve tried the medical ones & build up shakes, but I can never stomach them. Slimfast works for me, so I’ve stuck with it. Add in some Naproxen as a pain relief desert because my neck is sore & my back is in icy pain. HR 96, BP 91/65 (eating carbs doesn’t suit me but how else do I get through the day?!)

Final lesson of the day started with a mild headache from trying to (and failing) listen in big conference centre meetings*. As the lesson went on, the lovely flashy lights started and the right side of my face thumped. Metaphorically limping back to my office, I could’ve cried when my lovely colleague signed to me to ask if I was ok. The pain in my head was pulling my hearing levels down further & the brain power needed to lipread was too much. I was really lucky to catch the migraine early and attacked it with a Sumatriptan and Dihydrocodeine as what had been one side of my face was now in my spine (see my migraine post for why all the big drugs). I could literally feel the fog lifting. Bliss.

Unfortunately, post headache I’m tired & foggy and by the time I get home at 5pm I can’t function verbally or focus enough to lipread. The girls & I head up to bed to watch Bob’s Burgers & rest.

After I’ve semi-napped, Mr Geek brings up tea of grilled salmon & vegetable rice. It’s bland enough to et, but tastes nice. For the 4th time this week, we eat dinner in bed as I’m too exhausted to sit at the dinner table.

Evening drugs of:

  • More Dihydrocodeine – opiate painkillers that control my baseline joint pain well
  • Gabapentine – this is technically an anti-epilepsy drug, but it works well on the nerve damage pain.
  • Vitamin D – massive doses of this reduce joint pain, increase energy (ha), improve bone density, and make me a little ray of sunshine
  • A few others to deal with the ahem.. side effects of the opiates

Around 11.30pm my neck pops so hard that it triggers my spine being an arsehole again so Mr Geek measures out a safe dose of liquid morphine to at least help me sleep.

So there you have it. Before you chastise someone for not working through ill health because you see people with chronic illness “coping”, remember what goes into that image you saw. We are excellent actors, but also have a supporting cast of narcotics, and people who feed us, dress us, and take on all the jobs around the house that we can’t do because we’re busy looking like we’ve totally got this.

Even so, I’ve totally got this ok?

…. As a final word, I am a firm believer in science and I am perfectly aware that my headaches are triggered by orthopedic issues. But that doesn’t stop people giving some interesting advice /cures! Here are some of my favourites:

1. Head-TENS – Now I’m all for TENS as part of my toolkit, but I’m not up for electrocuting my heart or my brain.

2. Sex – with a migraine? Ha. Hahaha. Hahahahaha! No.

3. Um.. Pulling the blood from your head! You know, I’m not even sure what’s going on here even with the explanation. The internet needs a child lock.

*please don’t stand in front of windows when presenting. If people are lipreading, it’s nigh on impossible.

What is your major malfunction?

This is a ‘remember this’ post. Stream of consciousness shortly after ‘a moment’ is useful to print out and use for pain management. Apologies if it’s a bit garbled.

There’s this wonderful sweet spot after a massive pain flare where everything becomes calm & quiet. Even if it invariably returns, for now it’s like the eye of the storm and I can lay here totally still aside from my hand tapping my phone and feel the multitude of painkillers dulling each of my nerves.

Describing this might sound like I want to be high (quite the opposite! The side effects suck, but these drugs keep me functional as a human), the pleasure gained from this quiet moment is in the polarisation from less than an hour ago when I reached a crescendo which left me literally rocking in pain. No-one seems to know for certain what causes these God-awful headaches aside from craniocervical instability (posh word for wobbly neck & skull) caused as ever by Ehlers Danlos Syndrome, but after sitting up for too long, or being bumped, the flashing lights signal the party is about to start.

I’ve tried to explain this before, but without success so just bear with me on this one…

Once the flashy lights start, one eye feels like it’s bulging & a steady thud starts in my cheek. Over the past few weeks, I’ve been taking sumatriptan at this point to stop it going further – for 6/8 it’s worked. I could kiss the GP that suggested this literal wonder drug. It didn’t work tonight, but the trigger was different – tonight I’d hurt my neck washing my hair (the water weighed it down & something popped), then I knocked out my jaw at dinner.

When it progresses, which it did today, that squishy bit at the base of my skull that was sore before starts to sting, and gradually the pinching in my neck moves down my spine until my pelvis aches. The pinching feels wet – there’s no other way to describe it. Like cold water travelling through my spine to where things hurt and either sending electric, tingling above my waist, or thuddy dull pains into my legs.

With my head pounding & my spine burning, my usual level of hearing dropped. This scares me because having lost my hearing reasonably rapidly I’m always concerned about how much will come back. Usually, I’m down by the dog in the Moderate/ severe range in the graph below (I hear lower sounds better & speech is only audible if there’s no background noise), but when it dips everything becomes like listening to Charlie Brown’s teacher. It’s not that I wouldn’t cope, but I’m still very much functioning in the hearing world.

At this point I panicked. I know it’s the worst thing to do when you’re in pain and it just makes things worse, but reaching my version of an 8 / 10 on the pain scale causes me to hit the ‘make it stop’ button. There is no painkiller on the planet as successful as Mr Geek kneading my shoulders like dough when I’m backing away from my own body – why? Because in order for the actual painkillers to take effect I have to calm the fuck down.

I’m not actually rating my pain for fun here. Although monumentally subjective, pain scales are a useful way to stop, body check, and assess just how bad this is – it’s as objective as pain is going to get. The scale also provides facial images for Mr Geek to get visual cues of where we are. In this case, we’re well into nothing but the pain.

Many people with EDS have pain tolerances that would make a Spartan blush. I’ve been mildly annoyed by a broken bone, asked for paracetamol following an organ rupture, and yet had a full on sobbing fit because I had a cold. Like I said, messed up.

We treat my pain according to a pain management plan – imagine if you will a birth plan that we use daily (eg. him pointing to the plan & reminding me that heat and tea and soothing music will make it easier, and me yelling at him that if he ever wants to have the ability to get laid again he will give me drugs). This means that we work our way up from paracetamol, to codeine, to NSAIDS, to morphine, to hospital. Because of the brainfog, he’s in charge of timings & doses – this is a sensible step back on my part. Yes, it infantalises me, but on the flipside he is spreadsheet levels of anal about dosage meaning I camnot accidentally overdose.

This evening, after my spine was pinching, my arms were tingling with pins & needles, my hearing dropped out, & I was nauseous (but not sick). Despite feeling nauseous I was also really hungry. Mr Geek gave me everything up to morphine and sat behind me rubbing my neck & shoulders for an hour. The rubbing is similar to TENS – it’s distracting and the skin on skin chills me out.

It had reduced to tolerable levels & I laid quietly for a bit with my phone in ‘night mode’ & my heated blanket on but I could feel the pinching riding up again so we opted for morphine at the lower dose (this allows me to top up if needed, and keep my general dosage low). Laying in the dark with my hearing out is like sensory deprivation and having a distraction is useful.

A second dose of morphine was enough to create this lull and the potential for some rest and enough clarity to describe the type of pain properly instead of a mumbled “er, sort of stabby” when with my doctor. It’s very difficult with hindsight to describe the stages as it all rolls into one ‘bad headache’, so whilst this may not have been the most exciting read it will be useful for me & my doctor at the next review.

Post pain, I’m left with an ache along my back, a pounding headache, and absolutely knackered – this post was written in between sudden naps (and deleting the random characters from nodding off with my fingers touching the keyboard!)

If you got to the end, erm, hi?

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.

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…