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.

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Talk to The Hand

We’re going away this weekend with a group of friends that we see a couple of times each year in person, and regularly online. We are the good side of meeting those weirdos that spend hours playing computer games – we are those weirdos.

Each time I see them a little bit of me has dipped. It’s like a health version of those growth charts where you measure the child & mark it on a door frame. The last time we all met up was last September & I was coping well – my rosacea was trying to eat my face, but I was cosplaying in a mask so it was fine. Since then, my neck has got worse and causes much more frequent blinding migraines without warning, and my hearing has got worse.

The first is unpredictable, but I can throw drugs at it & they’re used to me being gently massaged back into place by Mr Geek as we carry on our game. There’s a neck brace, but that’s to keep my skull from sinking & re-enacting scenes from GoT. Like the other braces, largely ignore it. The second is constant and more of an issue – I can’t hear you.

So this post is more of a pre-holiday Deaf Friend 101 for my friends of stuff I’ve learnt works & ideas to nake everyone a bit more comfortable. It also includes a few signs so you know why I’m flapping my arms about.

I Can’t Hear You (properly)

Seriously, I can’t stress this enough. It’s got worse since the migraines stepped up a gear and if you call my name, I’m going to hear (maybe) the vowels – if there’s other people talking, you’ve no chance. To get an idea, imagine being in a really noisy club (yes, I know we don’t do social) and trying to have a chat. Their voice melts into all the other noises & you haven’t a fucking clue what they’re saying. Now put noise cancelling headphones on that play a hugh pitched ringing, and you’re almost there in my head.

My hearing aids amplify everything, not just your voices. It’s sensory overload – whilst it makes everything clearer, listening to crisp packets open in HD all day gives me a massice headache – I prefer my quiet dentist drill head.

How to help:

  • If I’m not looking at you, tap my shoulder (it’s not rude) or wave
  • If lots of people are talking, make eye contact & still wave
  • Talk normally, shouting distorts your mouth
  • Please don’t cover your mouth (if you have a beard expect a fair bit of guess work on my part)

Want a quick answer? Try a sign:


(For help you, just switch the direction)

Playing Games

Board games are great because they have visual clues to what’s going on. Except we play arsehole games where we switch rules & co-op (badly). These are confusing anyway, but I am channelling my World of Warcraft character here – I’m on /follow and wondering why you guys are yelling.

This does not mean that I don’t want to play! I have some serious FOMO right now. I shall go to the ball & laugh inappropriately because I misread what was going on.

Ooh look! More videos – because every day is a school day 🙂

Win!:

Lose!:

Fire Alarms & Such

Being practical, you stick nine nerds in a cottage one of is going to set the fire alarm off. I do hear alarms, but duller (is that a word?) so they invoke less of a reaction. In an emergency, just point to the door – I’ll get it & as we’re on the ground floor gettig out on wheels shouldn’t be an issue.

For less desperate stuff…

Need:

Doctor:

Tired (not big boobs):

Bed:

And finally, because they’re a staple at every meetup & I want to see you sign this without laughing (icepop):

Finally finally, yay for the weekend & Superbowl Sunday with awesome people 🏈

All of the sign videos are from the BSL Dictionary.

Escapism

So here’s the thing. I make a lot of jokes about goofing off & not trying too hard – all of these things are basically pure fantasy. I love my job. Teaching is in my bones and I find it nigh on impossible to switch off.

I work “part time” now, by which I mean I am contracted to work 4 days each week, spend my day off marking & prepping, and tutor 4 evenings & Saturday mornings. Part time = 45+ hours each week. When I’m not working, I’m mulling something over about work. So I needed a distraction that wasn’t generalized ranting on Twitter.

I’ve blogged a lot before about the need for pacing and work/life balance, but I just suck at it. Take right now as an example – it’s past midnight & I have a meeting tomorrow (today) with someone who I really want to approve of me as a teacher (fuck. I’m 38 & have been doing this a decade. Why am I still seeking approval like a puppy?!). Ok, I’m mainly awake because my knee dislocated, it’s swollen like a balloon, and liquid morphine keeps me awake.

So yeah, here I am at peak anxiety with pain levels that are piercing through the usual drugs & a top up of 20ml morphine. Anxiety does not help with pain, so I learnt to meditate.

I ought to mention that I’m equally shit at meditating because my brain gets bored. I sit here & do a “body check”. Breathe in……. Breathe out….. Breathe in…… Toes…um… Shit. I can’t feel my toes! …. Calm down dickhead, we haven’t felt our toes in years. Oh yeah…… Breathe out…..

I place myself somewhere calm….. here I am dancing gazelle-like through the fields of my mind… getting to know my new roleplaying character…. Clear your mind…. Nope…. And relaaaax…. Nope.

Because actually where I get to relax is inside my head creating stuff. As a weird only child, I spent ages in my room building home made maps & villages where the stories I told to the people in my head took place. I was generally far happier chatting to made up people than real ones. Mr Geek shares my love of sitting quietly with little plastic figures & watches from his office as I bring my imaginary friends out to play with others.

It’s been decades since I created something more personal than cool learning resources. I’ve sunk all of my creativity into developing CSI style codebreaking resources, Elma the Elephant hexadecimal colouring, Game of Prolog, Revision Twister… But over the past few months the games have crept back in. First came Warhammer, then Bloodbowl (if you suck at meditating, try painting teeny little orcs for weeks on end), then over the past few weeks I’ve been lucky enough to be invited to join some roleplaying games online and have just started a weekly campaign.

Before you back away from the nerd, hear me out.

Today was Game Zero – working out who we are, our back stories, the world around us & how we gel as a team. What I remember from teenage games was us as kids picking the warrior woman with the massive tits and distracting guards with nipples (and frankly nearly killing our shy DM who barely looked at women let alone knew what a real boob looked like). Instead, what we got was a game that lets us test out our psyche.

“What do you want from this character?” Holy crap, that’s a deep question. By this point I was already invested so just went with it.

In a group of just four, one is seeing what it’s like to have real faith, one is living knowing that they will die, one is merging being a young soldier with hidden disabilities, and another a manchild rebelling against caring parents for the greater good of those around him. This is heavy stuff – not your average elven archer skipping through the forest in suggestively shiney tights. I have to hand it to Blood – she unpicked our characters until they were real. We all know at some point a specific character is going to die, and yet we’re going to willingly get attached. Self-preservation mode has pressed the eject button & has shot itself through the ceiling.

So here we are, instead of meditating and clearing my mind to reduce pain, I’ve created Pip (Lady Philippa Billingworth), a genetically modified soldier with the anger issues of an orphaned teenage girl, topped with a mutation causted by the faulty collagen gene already in her body allowing her to bend & break her body seemingly at will. She’s the angry, frustrated internal me, albeit with a 7ft much more functional body and weapons. That can’t be a good idea…

To see what we’re up to & some of the other weird and wonderful activities from the guys, check out these links:

You can find me on Twitter at @I_Am_Spanners

Please do check out the Bloodthirsty puppets at either their website or Twitch (where you’ll get points for watching which you can use to mess with the game play!)

www.bloodthirstypuppets.co.uk

Bloodthirsty Puppets Twitch Channel – Regular games of various fun. Catch me every Monday at 7.30pm GMT, and watch along with me on Friday Night Spiced at 8pm GMT (unsurprisingly on Fridays), plus plenty of others.

And of course, I can’t do an intro to me being allowed to play with tese guys witbout mentioning ‘the hot one’

Skaggeth Twitch Channel – this guy is an absolute dude.

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.

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!

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…

Officially Funny. Or am I?

Soooooo… guess who got a nomination for a blog award for being a source of amusement?

The health blogger awards are quite big in my twitterssphere with many of my friends online sharing similar experiences of trying to quite literally hold it together and wobble through life. So, yeah, even being on the list is quite awesome – but winners are picked on endorsements.


Whether you read my blog to laugh at or with me, or if by some streak of luck I’ve managed to help in any way, I’d really appreciate you clicking the link & pressing the big purple “endorse” button to validate my online existence. 

https://awards.wegohealth.com/nominees/12945
Hey, you never know, you might be able to say “yeah, I knew her before she was huge”…. because in the words of The Brain “We’re going to take over the world”.

Clearly feel free to spread the link far & wide 😉

NARF.