A slip of the brain

I pride myself on holding everything together mentally, but had a moment today that was hard to explain.

One important note – this is not a sympathy post. It’s more an explanation & self-record. I will talk frankly about my condition, but only because we’re geneticallly linked.

I’ve been dabbling with voice acting in audiofiction recently & have had the absolute honour of working with some proper pros (I’ve added links below, because if you haven’t discovered them oooh you’re in for a treat). Now, part of live action roleplay podcasts is that there’s no script & you have to think fast. This ticks so many of my creative boxes and I love it. It’s a world where I’ve mentioned that my body is a bit wonky, but I can generally set my stupid physical self to the side & have fun. So based on this, I mask a good 80% of what’s actually going on, and some people don’t know at all.

So what happened?

I was mid flow with my warlock telepathically interrogating a player when the brain fog descended and I asked a question with complete confidence & they just sort of looked at me…

The words I’d said bore no relation to what I meant to say.

I snapped out of where I was & managed to brush it off and said sort of what I actually meant. And on we went, albeit a bit foggy.

So what actually happened?

It’s something called Transient Aphasia and is similar to the aura stage of a migraine. One minute I’m bright as a button & the next I’m talking absolute crap and am not consciously present for a few moments. It’s a bit like being in a vivid dream where no-one can understand you. It feels like ages, but it’s usually seconds.

It’s embarrassing when you build a persona around being on the ball & intelligent.

Aphasia can be triggered by any number of weird things going on with my body.

I take a drug called gabapentin which was developed initially for epilepsy, but treats the nerve pain caused by frequent dislocations & spinal injury. It does it’s job, but does so by impacting on my brain’s ability to create new synapses. I have to work extra hard to remember things. Helpfully, in addition to jellifyig my once super sharp mind, it can also trigger Broca’s Aphasia (when you lose words but understand others).

This is why poor Mr Geek has become a mind reader of what “The Thing… The THING” might actually mean at any time. Weirdly, I can still explain an adjacency matrix for Djiksta’s shortest path algorithm, but can’t remember the word for Spoon.

Then there’s the main reason for my migraines – cranial instability. I’m still mightily pissed off that my own spine is putting pressure on my brain and causing occasional cf leaks (yes folks, that’s where pressure builds up & my brain juice leaks out of my nose or ear – who says disability isn’t sexy??). So these migraines can take 24 hours to get going & early sings are whoosy heads & Wernicke’s Aphasia (the kind where you talk crap & have no idea you’re doing it).

Treatment for spinal instability in the UK is pretty much non-existent and after long discussions, we’ve agreed that I don’t want surgery anyway. Since being diagnosed with Ehlers Danlos I got the answers I needed and frankly don’t want to be poked & prodded more for a genetic condition that has no cure.

I make a point of not dwelling on it too much, but cringy moment’s)l like this in front of people I really respect, make me so frustrated with myself.

So, on a lighter note here are the podcasts I promised (these are all podbean links & not promotions):

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Please Don’t Touch Me – A Response To #JustAskDontGrab

If you follow my personal twitter, you’ll be familiar with my pinned tweet.

You’d think this was just common sense. But you’d be surprised how many tweets like this are screamed into the ether that is twitter.

My own lived experience of this is personal to me. I am aware that I have the inherant privilege that comes from being a middle xlass white woman raised in the south of England. When people touch my chair, they’re often quite taken aback when they are lectured by a stern BBC British accent that occasionally verges on the clipped tones of Mary Poppins.

I have grown accustomed to being leaned over in supermarkets and often pushed out of the way like an abandoned shopping trolley.

My standard response is to put on my brakes & request their name as grabbing a mobility aid without consent is assult (by UK law the act of pushing is assault, if they continue to push without consent this begins to border on kidnap).

Now, the act of putting the brakes on suddenly causes a few issues. Firstly momentum dictates that I’ll likely be tipped out if they shove too hard (I have an active user chair that’s designed to be “tippy” to make it more maneuverable). This is a calculated risk – if I do fall, that’s probably a few dislocations & potential for fractures because I’m what happens after elastagirl retires.

So I had my own way of dealing with what I thought was just an irritation. Then I saw a tweet thread that made me realise quite why I insisted on paying an extra £150 for tiny folding habdles on my chair (it’s a deterrent, but people still grab / shove the back of my chair).

This tweet by @BergBronwyn made me realise that the reason I get so cross with being moved is that I feel vunerable in my chair.

But it wasn’t just the tweet that caused concern, it was the streams of responses from people who saw no issue with taking away someone’s autonomy. I’ve made no effort to hide identities because it’s already in the public domain and this type of behaviour should be called out.

I’m still unable to work out if @chadwhite45 was a troll or just completely ignorant.

And he persisted:

And he certainly wasn’t alone in mocking her – some of these are ableism at its finest:

And since this reached so many people, I was really shocked that many were blissfully unaware of the increased risks when you are disabled.

  • As a disabled woman you’re twice as likely to be a victim of violent assault.
  • As a disabled woman, you’re twice as likely to have been sexually assaulted in the past 12 months
  • 1 in 5 of disabled women reported financial, physical, or sexual abuse from a partner – for both men & women, this statistic was twice as high as non-disabled people.

It’s no wonder that we feel more vunerable. And of course this is fuelled further by the fact that if I’m pushing my chair & you push it suddenly, I run the risk of wrist, elbow, or even shoulder dislocations. Even without EDS, an unexpected push could cause damage to the limbs that we need to be mobile!

It’s also really scary. I can only compare it to walking happily along when a complete stranger picks you up & carries you off. You have no idea why, or whether you’ll be hurt. But we can avoid these with two simple rules:

  1. Ask if we need help
  2. If we say no, then don’t assume you know better

So seeing as I’ve quoted many tweets throughout this post, I’ll end with what I thought was the best response of all.

Six Confused Women

…Sat at their desks and discussed how they “talk to their audience”. One in particular struck a chord with me – I know I need to sell, but I’m also putting myself out there for my audience & sharing a bit of me.

One of the ideas was to use snapchat to share “behind the scenes” peeks at what she does.

So at the risk of showing you how little I currently move from my 9sq ft, here’s my snapchat link – I’m going to give it a shot showing you behind the scenes of an online tutor & writer with the added twist of working for yourself when you’re sick.

See you there!

Protect The Chair! Making Waterproof Wheelchair Covers for Swimming (for under £20!)

Swimming is the best excercise when you have pain everywhere, but swimming in a wheelchair can be a pain in the arse (clearly not in the chair, but using the chaur before & after).

So I made myself some covers.

The towel was an important factor here, and I used a Turkish Beach Towel as it’s smooth cotton on one side so it’s not scratchy once it’s dried, but has terry on the other side to make it absorbant.

My 1st job was to cut the edges from the mattress protector. This had two advantages – firstly, it makes it easier to work with, and secondly it has built in elastic which I could use later instead of buying extra!

I measured my seat cushion by placing the lining & towel under my cushion & cutting a square around it, making sure that I’d left enough to go around the sides plus an extra 2 inches so the finished cover would wrap underneath like a fitted sheet.

I also cut tassels off plus 2″ of towel to make ties for the backrest cover. This was another excellent reason for the Turkish Beach towel – the finshed thing with it’s ties looks like I’m ready to go on holiday instead of hospital!

Once I’d cut same shape of mattress cover that I had for the towel, I lined them both up with the towel faced down & cover faced up* and trimmed any edges that were wonky (remember I was measuring around an oddly shaped Jay cushion with crap hands weilding scissors!).

*this is important as you’ll want them to match up when you sew them together.

Next, I placed my seat cushion back on, making sure that it was in the middle of the fabric & cut out squares from each corner. These went to 1cm away from the cushion.

Now I was ready to place the towel & cover with right sides facing in and sew together – it’s important to remember that you only sew the outside edges and don’t sew the corners! Otherwise you can’t turn it right ride out.

Next, I sewed the elastic that I salvaged from the mattress protector onto the straght edges that I’d just sewn (not the corners).

Once the elastic was in, I turned the fabric right way to create what can only be described as a giant showercap! With the right side of the towel together, I sewed corners together.

I’m sure there’s a neater way to do this as you can totally see the seams on the inside, but it’s a functional cover…

Making the back was a similar process. If you have a square back, then it’s identical albeit with no elastic.

If like me, you have a moulded/ fitted back, you’ll need to cut the shape of your back from the towel & mattress protector (this can be the rough shape plus 2 – 3 inches seam allowance). With a moulded back, it’s useful to add elastic at the too & bottom to help the cover “wrap” over.

Once I’d cut out the cover pieces (before sewing them together), I cut the tassled edges into 4 equal lengths then folded over the cut edges of the ties & sew along the edges to keep them from fraying. I attached the ties to back piece by sewing the top two to the inside of the corners and the bottom two in the middle. I then tucked them in as I sewed the seams.

(For a square back, sew the ties to each corner).

And this is the finished cover:

And from side (any reason to take a photo of my wheels!)

And from back – I’ve tied the straps in diagonals because it keeps the back cover more secure.

I promptly tested how well the cover worked with a day at the local pool & bubbles. Not a drop of water on my cusions even after some git sprayed with the shower (joys of tinypants helping me get showered).

Since then, I’ve used the cover weekly for swimming and we’ll be taking it on holiday. It’s doing exactly what I needed it to do and is as simple as chucking in the washing machine, or just hanging up like a towel to dry (just don’t tumble dry as it has plastic backing!!!).

What’s the one product that you resorted to making for your chair?

* This post contains affiliate links. I don’t recommend products unless I genuinely think they’re worth buying. By clicking / purchasing you are heloing me to maintain this site and my professional site over at www.TeachAllAboutIT.school

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.

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.