Hearing Zebras – A New Mobile App?

I’ve noticed that there a number of apps out there for people with disabilities, but the only ones that are built towards a specific condition are never quite right for people with EDS.

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So, as something to keep my toe in the water, and tbh something to create a foundation for a backup for long term employment, I thought I’d do it. The question is this:

What would your ideal Ehlers Danlos App allow you to do / record / monitor?

Answers on a postcard. (Or more realistically, in the comments?)

Initial thoughts – photo based Beighton test?

Doctor appointment printable  (you enter notes & images and it creates an easy to read list of concerns for your Dr with sections to record their answers because, well, brain fog.)

Don’t touch me button – if you need help, a button press will speak for you and explain your diagnoses and how to help you best.

Edit: so, I’ve started the basics of the app & design. Tonight was figuring out a sort of design and got the text to speech working (much more to come), but this is what it looks like:
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Dis-or-tommy-whatnow?

Some idiot decided that as her appointment with the consultant professor in London wasn’t until 5.30pm, she’d go into work & just miss the last lesson whilst we drove to the appointment  (2 1/2 hours), despite barely coping with a standard day at work.
That idiot was me.

As I got into the car, Mr Geek handed me the dreaded letter from the DWP that based on their own published waiting times, we hadn’t expected to arrive until March! My PIP interview is on 29th December. I’m not sure whether this quick turn around is good, bad, or just that they’re quicker here. Deep breaths shall be taken, because there’s bugger all point in fretting.

Last time we headed to London, it was horrific, so this time Mr Geek decided to drive. We set the heated seat up, surrounded me with bottles of water & gluten free snacks, and reclined the seat to try to take some of the pressure off of my back. These are the kind of things that you’d do for a properly long journey, not 90 miles up the motorway!  To be fair, this did a fair bit to help, although there were a few yelps as various joints went from aching to lightening bolt. Despite this, I managed to spend a decent percentage of the journey doing my standard post school nap (I’ve reverted to pre-school levels of sleep). I even managed to eat a gluten free mince pie, which if you’re gluten free or FODMAPING, get thee to a Tesco and buy a pack – they’re yum!

We even managed a rather sleepy car selfie.

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My appointment was with a professor for a referral for POTS  (Postural Orthostatic Tachycardia Syndrome), which is where your heart rate rises abnormally on standing. It’s all linked to the Ehlers-Danlos and is the referral that I’ve been least concerned about. It’s certainly not as bad a some people’s and right now my inability to eat without my stomach imploding and the slow transit that makes Royal  Mail second class delivery look speedy is having more of a daily impact. Or not, so to speak.

I’ve still been vaguely worried, as like with all medical appointments I’m always waiting for the “it’s all in your head” conversation that I’ve had too many times. Therefore as a coping strategy, I spent a week gathering and analysing data and used this to go armed with printouts of my own annotated readings. Complete with graphs 😉

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As we got closer, I could feel the adrenalin kick in (which is not what you want for a heart rate appointment! ), so maybe not so chilled about the whole thing.

London is very much removed from my quiet little village life and seems massive!

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St Mary’s Hospital is slap bang in the middle of London surrounded by proper red double deckers and black cabs. What struck me most was the stark difference between the NHS wings and the private wing. As a bit of a liberal leftie, I’m not particularly proud of going private, but as a person with health insurance who’s in a lot of pain, my guilt was softened somewhat knowing that I was paying to see someone who knows EDS and POTS inside out with whom I stand a chance of improving.

We arrived at the appointment nervous and not really knowing what to expect. The professor took lots of details about me & family history, including adding some interesting facts about a famous professor who shared my maiden name who had taught him the chemical link between dock leaves and nettles (wtf?), then asked about my symptoms and told me he didn’t need the printouts of the heartrates I’d  devoted hours to (Cue grumpy face). Next up, he got Mr Geek to help me up to the examining table and listened to my stomach (points for anyone telling me why this might be – I’m pretty sure my heart is higher up) & then chatted about random things like me being allergic to penicillin and that it had been discovered in that same hospital, and that my cardigan was a good shade of purple… Whilst he did this he took my blood pressure, then got me to sit up and did the same, then finally Mr Geek helped me to my feet and he did it again then told me to sit down quickly! Good job too as I lasted approximately 25 seconds before I had full tunnel vision palpation going to faint face. I suppose if your symptoms are going to play up, in front of the consultant is not a bad place to do it. In fact we went whole hog with flushed face and sudden overheating and clamminess!

After I’d laid down for a bit fanning myself like an overly dramatic Edwardian lady who’d just been flashed a bit of Mr Darcy,  Mr Geek got me back into my chair and we discussed the next steps. The Prof. was impressed that I was still working full time and asked if I could try working remotely as I was clearly disabled (adding that he didn’t wish to cause offence. Bless him! I wasn’t offended. The wheelchair sort of gives away how knackered I am) … visions of trying to teach via Skype. Probably not tbh, so we agreed that at least looking at a change of career is worthwhile. He made noises about me being very symptomatic and that he wants me to come in overnight after Christmas for more tests and identify suitable drugs to control the symptoms. So, positive in that it’s not all in my head & he has an action plan, not so positive in yet another person questioning my sanity over trying to keep teaching.

In the words of Matt from Game On – I do it because I’m a double hard bastard.

Next up was visiting my friend who has been living in the Lindo Wing for the past fortnight. How lucky that the appointment for me was in the same hospital!  Ok, we both have EDS and autonomic issues, so considering the lack of consultants, maybe not such a coincidence. But anyway, I’d been looking forward to seeing her and had got ridiculously excited when she’d told me it was the same hospital and she was up for visitors!

The hospital is roughly the size of the town I live in and we invariably got utterly lost. This didn’t dent our sense of humour though…

Should I try it?

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Then we giggled like schoolchildren. ..

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Realising that it was now 8pm and she and I were both knackered, we headed back to the car and in search of dinner. Mr Geek did the ultimate in chivalry and gave up going out for dinner, instead stopping at services so we could get Japanese food (which is delightfully free from gluten) and still get home before 11. Sadly, most places were shut when we arrived, so Mr Geek still got his burrito but I settled for mild curry. Fare thee well intestines…

The last leg home was quiet as Mr Geek focused on driving on a caffeine deficit and I tapped away at this blog from under my blanket with the first set of my evening painkillers slowly warming me and melting away the sharpest top layer of the pain.

I know it’s just the beginning, but today was a yes your autonomic system is buggered which leads on to this is how we fix it. Despite being the nuttiest professor I’ve ever met, I feel like I’m in the safest possible hands. We know this because despite being nearly 100 miles from home, it’s the first time in living memory I’ve agreed to stay in hospital – I even fought to go home when my ovary exploded. I didn’t win, but I still argued.

It’s not all in my head! Yay!

Like Mother Like Daughter

A few years ago, I wrote a post about my very much beloved Mooncup which years later is still very much in use, has travelled with me to no less than 5 countries, because seriously, ffs, every single holiday, and remains the only thing I need, and will need until I hit menopause.

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I continue to race about it to all my friends, who continue to make faces akin to having just watch me stick my entire arm inside my own vagina, and I continue to find it weird that people would rather stick bits of bleached cotton wool inside themselves than washable silicone.

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For those of you who I haven’t evangelised, the mooncup (or in fact any menstrual cup) is a small silicone cup about an inch in diameter and a little taller which you insert into your vagina to form a suction around your cervix and collect menstrual blood. At regular intervals, you just pop it out, give it a wash, then pop it back in again.

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If you need another reason to try it, how about this:

1 pack of 24 branded tampons cost £3.50 on a good month that might see you through. Based on an average of 1 period each calendar month, that’s £42 per year.

1 menstrual cup is going to cost you around  £15. It’s going to last you years – so far I’ve been  using mine for 4 years. Let’s compare that to tampons over 4 years : that’s £168 or £15.

Anyway, I’ve gone off on a tangent. I had the conversation this week with Beanpole about keeping a “girl bag” in her school bag just in case. And having seen me so comfortable with it, she asked for a mooncup! There’s nothing wrong with using a menstrual cup from when periods start as all it requires is to be comfortable with your own body. We also bought some really funky washable sanitary pads in rainbow colours.

My baby has planned to be a woman and she’s a woman who won’t kill the planet or isn’t frightened of her body.

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It’s Easy Isn’t It?

It’s very easy to get frustrated when I can’t just get up and do something myself. This gets magnified a gazillion times when you add hormones into the mix.

Just for reference the week before “that week” involves extra wobbly joints, extra joint pain, not so random CRPS flares, breasts that swell and feel like they’ve been used as speed balls, retention of enough water to solve a sub-saharan drought, and just a teensy bit of irrational anger.

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It’s very easy to forget that you picked me up from work, cooked dinner, shuffled the kids to bed, and because of all that washing my stinky wrist braces was not high on your agenda.

It’s very easy to forget that we’re separate beings, so your day hasn’t been spent listening to my squeaky wheel so you did forget to oil the bearings because you haven’t heard them squeak since this morning. It’s also easy to forget that a week isn’t actually that long since I mentioned it – you’ve had other plates to spin like making sure my chair battery is charged, scanning every medical letter that arrives, planning our combined diaries, getting me to doctors appointments,  monitoring my medication, bringing me water & reminding me to eat…. and generally functioning for two when I go vague.

It’s very easy to forget that your job is important too, probably moreso and that you’ve been working on my time schedule for the last half term (the last 6 years tbh) which impacts on your work. This is a very valid reason why the Christmas cards that I bent my fingers out of shape writing at the weekend are still sat on the footstool.

It’s very easy to forget that although we were sensible and went to Amazon for all the Christmas shopping, someone needs to unpack these boxes that are invading our bedroom, wrap them & hand them out, and invariably that’ll be you.

It’s not easy to forget that I need you. I don’t want to need you, I want to want you. Needing you puts me in an uncomfortably vulnerable position, but if I have to need someone,  I’m glad it’s you.

I’m sorry I’ve been an irrational psycho this week xx

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I’m Crap At Pacing

It’s December in the northern hemisphere and yet here I am laying on the sofa with an electric hand fan trying to cool myself down and feel less weird.

I’ve not blogged for a bit as I’ve been struggling to keep functioning & when I ceased functioning, I was struggling to regain functionality! There are a good few people, some close by who are struggling far more than me right now and I wish I was able to find answers for them too.

Thursday I conked out having utterly overdone it at work and had the worst car journey home. Mr Geek picked me up from school Thursday evening as it was our 10th wedding anniversary and we had an evening of cuddles & films planned. He’d dropped me off that morning not at my best (OK,  I was woozy and nauseous and finding it hard to focus – not brilliant teacher qualities). By the time he picked me up I was a lot worse. I could barely keep my eyes open and was either sleeping or passing out in the car, I’m not wholly sure, but each time I snapped awake I felt intensely car sick and in too much pain to tolerate. A 30 minute journey felt like it lasted hours.

Once we got home, I laid my head on Mr Geek’s lap and fell asleep with him stroking my head (Romance isn’t dead, but it is sleepy). This was followed by a fitful night of insomnia from pain, wild fluctuations in external body temperature, and palpitations. Suffice to say I wasn’t having fun. Friday just wasn’t going to happen. I called work, set cover lessons and collapsed in a crumple back on my bed. I vaguely remember saying goodbye to the girls and Mr Geek, but nothing existed in my world aside from sleepy acknowledgement of purring from Thomas our cat who kept me company until I woke up just after midday.

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Aside from still feeling hungover (?!), I felt more alert Friday afternoon and even managed to watch a film with Mr Geek whilst he wrapped presents in the evening. Weirdly, that worried me more than feeling unwell – what if the only way to feel vaguely normal is to stop and rest more than I am? What if I do actually need to nap? Teachers can’t nap. Teachers can’t just have a rest – after staying alert all day, teachers need to keep going with admin, planning, feedback and more feedback with those bloody green pens. Teachers can’t fall to pieces because they’ve attended just 4 out of 14 parents evenings. That’s insane. I need to get a grip.

Saturday followed similar lines, with us taking the girls to collect their kung fu black part 1 sashes in super proud parent style. It also saw final relief from some seriously unpleasant slow transit stomach issues (*** TMI poopy talk alert!!! *** ) which the pharmacist had suggested I treat with lactulose – it had been having very little effect despite increasing the dose to over 40ml. In the end I resorted back to Ducolax which prompted at least some movement even if it was not the nice nor painless version lactulose promises. This prompted me to chase my referral to professor #2 who is meant to be looking into my stomach, slow transit, and inability to eat more than a bit of solid food each day. I’ve felt nauseous since August – it’s not funny anymore.

Today started in a productive way with me sitting up in bed and wrapping the presents that Mr Geek can’t do… it would seem a bit mean to make him wrap his own stuff just because my hands are being crap. And actually, they’re not too  bad today. After 3 presents, various bits of me were complaining loudly at being forced to hold scissors and pinch paper. By 5 presents, I had to sit on my hands to “smooth them out”. Totally worth it for him.
Seeing as the kids wanted a Darth Vader tree, we’ve colour co-ordinate the wrapping paper because hey,  why make life easy? 😉

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Mid morning, we met friends that we’d been promising to see for weeks for bowling (my role was chief taker of photos) which the kids just loved. It also gave Mr Geek a chance to unwind with the kids. Robowheels really came into their own here as I could sit in a corner with my blanket and chat whilst the others weren’t throwing shiny balls down a wooden ramp towards poor defenseless pins.

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Just these two thing took me back to my previous knackered state, but we had also promised to pop in and see Mr Geek’s parents which is a weekly visit that we all enjoy. By the end of this though I was back to eyelids trying to glue themselves together and feeling sick. Any attempt at pacing over the past few days had gone out of the window and I’d blown it.

A new development in this body crapping out thing is the even more overwhelming tired – I’m getting used to standard fatigue where I feel more tired than I thought possible, but this is like melting into the floor tired coupled with nasty Alice in Wonderland spinning head, and muscle aches like I’ve been overdoing it at the gym. (Ha! Some hope!)

I did my standard swoony thing getting up just after dinner and checked out to see if my heart was raised – I’d gone from 53bpm to 104bpm which explains the swooning, but none of the other stuff.

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In massive contrast to how I started this blog post, half way through writing I was under a duvet with the heated blanket on as I was doing an excellent impression of an icicle. So far the specialists have banded the dysautonomia diagnosis about between them and at me and hopefully I can get this confirmed when I see professor #1 on Wednesday. I say hopefully, as at least that gives me a firm explanation why my body appears to go into shock every day or so. Because that’s sometimes how it feels with the ice cold limbs, thumping heart & random shaking (Although that’s rare).

I’d like someone just to tell me how to fix this, or how to slow down without letting people down. Or at the very least, how to stop it getting worse as its starting to scare me.

I Used To Have Brain Cells

So my GP has upped the gabapentin again and swapped my tramadol for oramorph which means that whilst I feel like I’m a functioning human  with thankfully a marked decrease in pain,  I pretty much resemble Neil from the Young Ones.

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My hip spontaneously popped back in during a year 10 class causing me to yelp in a very unprofessional manner which made the kids laugh, then when they realised what he crack was make the urgh that was your bones! face.

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Whilst discussing trying to balance pain relief with being conscious with  the GP she asked me how I was coping at work. For the first time in ever, I answered without hesitation or putting my Shields up (totally caught off guard). I’m not.
I was a brilliant teacher and as much as they still get 100% of me, there’s less of me to go around. I can’t work as much in the evenings and weekends because I’m recovering from getting myself out of bed and being present and focused in the classroom despite levels of pain that make me want to make guteral birth noises.
I’m just not ready to let this part of my life go. I’m terrified of the financial consequences of not working. And yet despite all of these things, I long for  some time to hibernate and recoup some spoons. It is a worrying point when I look back at the day I caught norovirus and spent the day holding a bucket on the bed so I could watch Star Trek whilst hurling (every 10 minutes) and consider that “me time”.
Norovirus has got nothing on the way EDS is kicking my arse, and yet here I am taking my pills, drinking my drink, then crawling into my chair to act like I can totally cope.
Tomorrow is another one of those 13 hour teach then parents evening days.

This too shall pass.

Weirdos Like Me

Some days feel very lonely in the world of me. Mr Geek is a constant source of silliness in my life, but sometimes I just need my friends to cheer me up. It’s just that they live bloody miles away! Then along comes Facebook.

I posted a thing that’s doing the rounds on 9Gag about women braiding their own beards & instantly got whoops from 2 special people, so I thought I’d give it a go. No mirror,  no dexterity in my fingers, but a beard was created.

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Then Mrs Gypsytree followed suit with her own dreadlock version. She doesn’t take much egging on to be my partner in crime…

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We were kinda dissapointed that GiddyKnitter hadn’t joined in the fun, but ce la vie….. then we realised that she’d gone full beard. She nailed it.

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My friends, no matter the huge distances between us make me feel like I’m not the only loony in this bin. You bearded women are awesome.

And they have better beards than me.