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

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

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?