I’m Batman

I’m starting to become rather familiar with the wee small hours as I slowly electrocute a section of my body into submission where codeine & even morphine have failed to dull the ache of a subluxed joint that clunks back into place.

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My breakthrough pain appears to be nocturnal at the moment as I’m resting quite a bit during the day, but the minute I try sleeping, it kicks my arse. It appears that I’m Batman, just with less crime fighting and more insomnia and husky voices.

We’ve invested in a couple of church candles with LEDs instead of flames to provide me with soft light which is dim enough for Mr Geek to sleep through, but bright enough for me to safely identify night time drugs by. I really appreciate being

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able to see rather than scrabbling around in the dark. They’re completely safe so no fire hazards, but still made of real candle wax!

The wires in the photo are my butterfly pads for my tens machine which are currently dealing with my shoulder after it popped out yet again (I leant on my arm – rookie error. Also, surely it’s time for a new joint? I need this shoulder :/ ). Butterfly pads are essentially larger pads that combine 2 tens pads with a non connective strip in the middle. This means that you can place them across your spine without electrical pulses being on your spine, or in my case, place the pads in the optimum space apart to force my shoulder to twitch the joint back into place and sodding well stay there.

I’d been doing so well too! This evening, because the girls had been sent to bed on time due to excessive whiney behaviour (Beanpole doesn’t deal with tired well. Tired + Aspergers = irrational outbursts of claustrophobia. Beauty sleep was required) Mr Geek had tried out the hot stones I got for Christmas, which once we worked out how not to cause 3rd degree burns, were incredible around my SI. He had fun mocking the hippy people on YouTube who used different stones for heat and cold with his Science knowledge of heat transfer (their science behind using hot and cold to heal knots in muscles seems to hold up against his BS filter). We even managed to have an evening nap before we woke up in a panic because I’d forgotten to take my evening meds and the my shoulder went… and cue me still being awake at 1am.

Still, there is a silver lining to all this. If nothing else, I’m getting plenty of quiet time to write and read. An up (and down) side of EDS is that the opiates have barely any impact on me, so where most people would be stoned out of their tree, I’m completely coherent aside from the vocabulary stolen by the Neurotonin. My NHS specialist was skeptical about this being part of EDS and put it down to opiate tolerance from long term usage. This doesn’t explain why my epidural was ineffective,  or why the usual local anesthesia does nothing. We’ll agree to disagree here.

During this quiet time, I’ve made contact with a number of local support groups and my quest to find a hydrotherapy pool continues. So far, I’ve found 2 pools but neither have a hoist, 5 canine pools, and 1 equine pool.
My local pool has a ducking stool, but is so cold that the last time we tried, I spent 4 hours shivering under a blanket with skin like ice after. Still, I shall not be defeated….

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Piss Off Pain, I’m Busy.

There are lots of ways to make it through a busy time (like the Christmas Holidays) when you’re in chronic pain. The following are my main tips that I’ve been passed or have learnt the hard way. With a little luck, these may get us to the end of the year relatively unscathed…

Take your regular pain killers regularly

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That might sound like a no brainer, but so many of us try to reduce it down and only take pills when we “need” them when actually what we are doing is putting ourselves in a position where we have to fight much worse pain in the end! If you take your standard painkillers regularly, you create a base level of pain, then have a backup for anything that gets through your first line of defense. Your ‘breakthrough’ pain will be more manageable if you’re already handling the regular pain.
Right now I am dealing with my breakthrough pain with a strategy of stretching, then NSAIDS (like ibroprofen or naproxen), then massage if Mr Geek is here & available or TENs, then oramorph as a last resort,  but because the round the clock stuff is actually around the clock, I only need oramorph one or twice each day. But also because of the tactics below…

Don’t stand if you can sit down, don’t sit down if you can lie down.

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Welcome to having spoons. I could technically crutch shuffle about the house, but it’s slow, it’s painful, and each time I do another joint pops out. Instead I use the crutches when I’m visiting people I can’t visit in the wheelchair, or as a daily exercise routine for my legs & arms. I couldn’t do a day of shuffling – I can barely manage a few minutes before I need a sit down, if not a nap. So yes, whilst I have legs that do sort of function, albeit in a weird wobbly painful way, I use a wheelchair to preserve my spoons, prevent pain, and prevent more injuries.

Alternatives could be keeping a chair in the kitchen to sit down if you’re on vegetable duty, or using a walker or folded walking sticks both of which have built in chairs. When I get back to walking, and as WordPress is my witness, so help me I will, I’m totally going to get this funky seat stick!

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(I found this at Walking Sticks Online – because why mess about when you name your shop! – usual statement, I’m not being paid to advertise – I just thought it was cool so shared the link)

If you have people over, encourage them to feel completely at home by sitting down or even making you tea! They’ll probably be relieved that they can help and it’s nice having friends who just rock up and make you tea.

You are not being lazy. You are prolonging your ability to participate.

TENS isn’t just for pregnant women

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Another trick for breakthrough pain that is widely used by physiotherapists and drug free! I bought my first tens unit way back when my back first started to wave the white flag in 2007. I wore it discreetly under my clothes whilst attempting to simultaneously breast feed and study for a degree (doable, but not recommended).

The way that TENS works is the electrical impulses block the pain receptors from the site of the pain travelling to the brain and replace them with pleasure signals. It’s the same theory behind rubbing something better – the science says that actually you can rub it better! (And you won’t go blind. Fnar fnar). This is also why we crave massage when our muscles are sore.

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There are a number of different settings which work on different types of pain and my current tens unit allows me to choose between 8 different styles and vary the intensity (it’s a few years old now – the newer ones are super whizzy!). There are a number of manufacturers who are now also selling whole joint garments which use conductive thread to spread the pulses over wider areas like a whole hand, knee, or elbow  (sign me up!).

If you do get a tens machine for yourself, making sure that it has the universal pad connections will save you in the long run in terms of buying new pads, both from the cost of generic tens pads which are currently about £5 for 4 pads and also the ability to plug in different pads such as the larger butterfly pads for back / hip pain.

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In proper layman’s terms, the buzzy settings are good for nerve pain as they replace the pain signal sent from the bit that hurts with a similar pleasure signal that is produced by massage. This gets the brain to produce dopamine (the hormone that makes you feel all good and floaty post orgasm) which also happens to be a natural painkiller. Alternatively, the thumpy setting that makes your muscle twitch, is good for muscular pain or excellent over muscle knots. This acts like the deepest deep tissue massage you’ve ever had because the muscles are massaging themselves! I’ve had a fair bit of success using this setting on mild, but stubborn subluxations to get the muscles to squeeze the joint back in.
My personal preference is to use a setting which regularly cycles between each in order to stop my body from acclimatising to the setting.

Have a cuddle

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When TinyPants was born, we were encouraged to use kangaroo care where the teeny tiny prem baby is stripped down to a nappy and placed into the mother’s shirt (no bra) to create skin to skin contact. It encourages breastfeeding, a feeling of safety, and reduces stress for both the baby and mum… Unless you go sans nappy & your baby poops all over your boobs… Yeah. Don’t do that.

Just as it reduces stress in teeny tiny babies, skin to skin cuddles do the same for adults.

This can pose some problems when chronic pain is involved. Full body cuddles may be out of the question when you’re in pain. If Mr Geek leans on me I’m likely to yelp which does nothing to relax me, or him for that matter. But, I can lay on his chest whilst I randomly throw the covers off and on as my body temperature fluctuates. The important bit to remember is that it is skin contact – being nude will actually help (even if it causes you both to be utterly frustrated when pain is preventing rodent like fornication – that’s a whole other post about how sex can help with pain!). If even this isn’t working, simply laying close with him stroking my hair is the most insanely relaxing experience. Again, the dopamine that wanted physical contact with another person produces, limits / reduces pain levels. If you want to get all anthropological about it, look at the reasons why apes groom each other – it’s not just to get rid of lice,  but to form family bonds and forge relationships. It’s another example of pleasure receptors in the brain being more powerful than pain receptors.

I’m A Genie In A Bottle?

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Mr Geek spends an unspeakable amount of time massaging my various extremities and my back. I’ve tried all manner of massage pads & chairs & shiatsu rolling devices, but they are never any match for human hands that can feel the muscles & bones that refuse to conform to the standard anatomy drawings.

Over the past 12 years, he’s got to know where all the knotty bits are, which bits may clunk, how to use just enough oil to work a knot out (or at least make it small enough to reduce that blinding migraine headache), and which bits to never touch unless he wishes to spend the next few hours feeding me megadrugs. There is no massage therapist on the planet that can replicate the pain relief he can provide. Without his pretty much daily homage to RSI, I’d be in more pain than I can tolerate.

If you don’t have a Geek to poke your sore bits, and if you do have a financial budget for maintaining your mobility, massage can be a real winner in terms of pain reduction combined with physio. Make sure that you book with someone who really understands your condition(s) and if something hurts, ask them to stop! The massage technique that comes up time and again on the EDS forums is trigger points massage as we are usually prone to knots. If you happen to be local to London (I’m not really), then there are therapists at The London Hypermobility Unit who specialise in this. The downside is the longevity means that massage is something that, like laundry is a never ending cycle.

At home, more simple things like hot stone massage can be really effective on chronic pain (avoid these in a fibro flare if your skin can’t take heat), or sticking a deep tissue massage video on YouTube and following their lead.

I hoped some of the tips I’m picking up are useful. What is your top tip for tackling / managing the breakthrough pain?

It’s Crap Feeling Like Crap At Christmas

A friend of mine shared some very wise words this evening and I’d like to replicate and add to them here.

Whatever it is that made you arrive on this page, whether you have a long term mental or physical condition, the holidays can be a little less jolly. The twinkly lights, the parties that you can’t or try to attend but feel on the outskirts, the social or financial worries, any or all of these can feel or appear worse this time of year because we’re meant to be happy and jolly.

For me, it’s Christmas eve at 12.30am, so technically Christmas, and I’m laying in bed with a tens machine strapped to my buttock in the wild hope that it will have the same effect as it did with my shoulder last night where the muscle twitching over the course of a few hours gently manipulated my subluxed joint back in (Whoop! ). Pain sucks. It makes you tired and grumpy and do you know what? It’s OK for you to feel sad about the loss of normality, or the lack of involvement, or just that it hurts. What is not ok is to feel guilty because you can’t put your chronic condition in a neat box and hide it take life easier for others. Invisible Illness can be tough for families and friends to understand and you may find you get a few extra “can’t you just…”, or “have you tried…” comments. People have good intentions at heart.

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Your mental health is just as important at Christmas as it is the rest of the year. If you need to talk to someone & you’re in the UK, call:

Samaritans – 116 123
Mind – 0300 1233 393
Rethink – 0300 5000 927
If you’re at risk of harm please call 999.

Other useful numbers include:

Refuge – 0808 2000 247
Shelter – 0808 800 4444
Police non-emergency – 101
NHS non-emergency – 111

I hope you enjoy the holidays, but if you need help, please reach out either to the professionals above, to family & friends,  or just the many online communities who provide a huge bolster.

However, if all you needed from this post was a refill of smiles, have this Christmas squirrel.

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I Like Cereal – I sound like rice crispies

I saw the NHS Rheumatologist today, you know just for funsies. This was the appointment I’d been referred for by my GP in August. Now before anyone from the US jumps in with “ahhh loook, your health care sucks”, I’ve also used my husband’s additional insurance to see three specialists since then, get a diagnosis and start other investigations. But the insurance doesn’t cover long term care.

Our state system however, doesn’t run out. It will care for me whatever goes wrong using the resources that it has in the best possible way to ensure it will help others too. Part of that is today’s consultant giving his opinion to the Pain Management Team who will take me from here to wherever we end up. I’m not charged at the end for any of this. There is no bill landing on my doorstep, I do not need to be afraid of the cost of the medications prescribed. I’m just that little more protective of our state health care seeing people use it as a stick to bash Obama’s dream of free health care for all. I don’t understand people who don’t think it’s a good idea!

I saw one of the 4 specialists for our county today who despite having a queue, took his time to explain his thoughts to me, and throw out the piece of paper that gave me a diagnosis and examine me himself, and in more detail than the private assessment. I asked if it was ok to take audio notes as my brain fog is at warp speed and whilst I may smile and nod, my brain isn’t retaining much. He agreed with no issues and so my phone has become an extension of my brain once more!

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He looked for signs of arthritis  (none – win!) and poked at weirdly painful sites just outside each joint. These are trigger points where nerve endings are bundled and are indicative of chronic pain response, where the body is so used to pain it goes over the top with pain signals. He also successfully told me without asking which joints hurt the most and which sublax most often. His earlier comments about disregarding dysautonomia were sort of puts aside as where joints were concerned, this guy had magic hands. He also did something far more important – he spoke to me, but explained what he was doing to Mr Geek & asked how he was coping. Mr Geek walked away from that appointment informed, relieved, and empowered. I can’t thank the doctor enough for doing that.

Despite being freezing cold, in my underwear, with a strange man causing extra pain to my joints, I liked him.

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He asked me to stand up, which I did with the help of Mr Geek. Then bend forward. Cue second round of tunnel vision & this time full on collapsing on Mr Geek in front of a doctor in a week. A new record! But despite feeling my vision go black, I knew it was Mr Geek who put me back on the table, but there was an extra hand on my shoulder that I was really aware of & he kept it there until I was fully conscious and stopped the examination right there & then. A simple piece of physical contact gave me a focus point to go from fainting, back to focused and calm – clever man.

He had a more positive outlook on my EDS and autonomic issues than any doctor I’ve seen so far. I might even use the phrase of the moment at school – get had a growth mindset. In essence, he said that if we look at this holistically, using pain relief from medication, mobility aids to keep functioning, physio to maintain or even build muscle tone & assistance from the autonomic team for gastric & pots, then there’s no reason why we can’t slow the decline if not even reverse it a bit. Reverse it.. as it make it better! Ok, make it a bit better. I’ll take that.

Part of dealing with the heart rate, and also the slow transit is drinking more liquid than I thought possible.

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I appear to be taking the small child approach to water in that I’m only thirsty when I’m meant to be going to sleep, or instead of eating dinner, or when we need to leave the house. Aside from that, I’m getting constant prompting from Mr Geek or my mum. Whilst I feel like a 35 year old child being nagged, it’s probably for the best as the IBS is reigning supreme this week and dehydration is nigh. Whilst we wait for the insurance to confirm if they will pay for the autonomic testing with the Nutty professor, it’s home treatment with water & salt. Fingers crossed it comes through.

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I started writing this post at 12.30am as Mr Geek has just helped me stick the TENS patches over the back of my shoulder. One of the things I took away from the appointment was the effect that my crappy sleep pattern has on my pain levels – yes, I have pain from subluxing left right and centre, but I also have secondary pain from pulled muscles, trigger points (knots… really painful muscle knots ), and CRPS. His suggestion was that lack of sleep triggers pain, and pain triggers lack of sleep, so I hit a viscous circle. Sadly, tonight Consultant causes shoulder to sublux which for the love of God won’t go back in, causing pain (and some interesting numbness in my hand and forearm), causing sleeplessness. I’ve medicated to the eyeballs, but nope.

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So instead of jumping on Mr Geek’s last nerve (because frankly, oramorph just makes me giggly instead of sleepy), I’m trying the tens setting that just thumps against the muscles making them twitch a bit. It does actually tone down the pain a bit, certainly enough to think straight.

Finishing this post at 2am probably isn’t doing the sleep patterns much good, but it has allowed the TENS unit to get deep into the muscles and do its thing. Tomorrow is Christmas Eve which means final wrapping, excited kids, and the traditional supper with Mr Geek’s family. I’m not at my best in the evenings now, but I wouldn’t miss it for the world. We will spend the evening tracking Santa on Norad and watching various grandparents preserve themselves in alcohol. They take me just as I come, and in return, I’ll do my best to play along with being a human…

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Note: for those of you confused about the cartoon guy – it’s Cheese from Fosters Home for Imaginary Friends. With the combination of brain fog and side effects from pain or painkillers, I pretty much relate to him right now.

I Have Faith, It’s just Not Your Faith

It’s Christmas and there’s lots of people celebrating in their own way, and whilst out shopping for my beautiful girls’ gifts I was approached by an utter stranger with the words “he will heal you when you let him into your heart”. Unlike last time, (and because it Wasn’t a child) I responded with my actual thought of “Don’t be ridiculous”. Also stop touching me. Personal space please.

I fully expected to laugh about it on the way home, but instead I packaged it away in my head. And waited until now in my safe blog space to explore it. So welcome to my 1am painsomnia party. Anyone in the house who can’t sleep despite both diazepam and oramorph shout “heughhhhhh!”…..  oh. Ok. Just me then.

I know a lot of people who have enormous faith, some Christian, some Muslim, others Buddhist. They are kind, wonderful people that I am richer for having in my life. I was raised Christian,  but given the freedom to make my own choices (with a healthy dollop of Catholic guilt should I choose to leave the church). But whilst the amount of water remains the same, my glass got bigger.*

My first bug bear was the idea that I got ill because of something I did. Sin makes you sick… or I did something to deserve this stupid genetic condition that wreaks havoc with my internal organs and encourages my skeleton to separate at every possible occasion. I deserve this pain because I sinned. How very Catholic. If this is the case, had I known, I would’ve enjoyed that sin a lot more.

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The other suggestion I’ve had from people of faith is that God has a plan and this happened for a reason. So, this all loving father tried to kill my daughters (which were saved by science) and has had a fair few pops at me and because I’m the weeble that won’t fall down, we’re just throwing pain in my direction because there’s a reason I feel like death on a daily basis, it’s just on a need to know basis. Bollocks.

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EDS has been slowly stretching me like chewing gum for a decade (and much longer when you consider childhood injuries), although this year the stretching went nuclear, but to add to that CRPS developed in my pelvis. I will not be stronger because of this, what I will be is physically addicted to opiod medication because this is levels of pain that no amount of praying is going to touch. In those wee small hours in the early days when my bones felt like they were running with acid, I prayed,  I begged, I would make bargains. In the end, the being that made it stop, or at least tolerable, was a GP with a recognition that I needed something to work on my neuropathic system. If you are reading this and still think you should post a passage from a 2000 year old book to tell me why I feel pain, please study the chart below. Now live that pain daily until science rescues you.

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The side effects of Neurotonin which was prescribed alongside a whole host of painkillers for the non-neuropathic pain, are similar to those following a mild stroke. The drug prevents synapses from being formed and as suc, words are temporarily lost from my vocabulary and my short term memory worsens. I quite literally did give CRPS a piece of my mind.

My faith is placed with my doctors who have dedicated their lives to solving the mystery of dysautonomia and eds. They do not declare themselves infallible or omnipotent, but so far they have been brutally honest about a lack of a cure, whilst helping to reduce pain and set me on a path where I’m strong enough to help myself plateaux rather than slide down further. I do not worship them, rather respect them and trust them quite literally with my life.

I will finish the same as I started. If you have faith, that is a wonderful thing. I commend you for holding onto that light in a world that’s pretty hideous right now. But, please don’t try to convert me. I am a humanist – I deeply believe that we should attempt to treat each other how we wish to be treated and take care of the things around us. When I die, I believe that it is the end – my body will go back to being part of the earth and I will live on genetically in my children. What matters is the here & now rather than any afterlife.

Christmas to me is a Pagan festival which celebrates the winter solstice and the idea that hard times are over half way through. Spring will soon be here and with it the warmth that will sooth my bones and food that will support my slowly failing body. Despite this, it’s also a holiday adopted by other religions to promote a sense of community, and anything that makes us look at someone and ask them if they need a hand (or leg, or shoulder) can’t be bad.

So to you, whoever you are. I hope this week brings you a small piece of love or joy in the form that you hope for. And if you possibly can, this week pay it forward – ask at a coffee shop if you can pay for the next person’s coffee, go sit with the little old lady sipping tea on her own and listen to her, see that lady in a hijab looking uncomfortable on the bus? Go sit with her and smile if she looks at you, listen to the carol singers at your door and thank them for bringing you music, however bloody awful and put of tune it was, ask the lady in the wheelchair if she needs a hand. Be nice. Human nature is not to be cruel.

*kudos to you if you got the reference

Star Wars – From Mother to Daughters (no spoilers!)

Growing up in the 80’s as a nerdy girl was ok. Mainly because we didn’t actually know any better. My 2 hours between 3pm & 5pm after school (because that’s all of the kids TV we had back then….) consisted of the following:

He-Man (and later She-Ra):

Like seriously, a guy with a dodgy hair cut (even for the 80s) in fur pants (briefs) and his sister in a dress so short she really ought to be wearing some Bridget Jones sized knickers under there to preserve some dignity. And cleavage in a kids show! Actually, scrap that – the cleavage is quite good. But she generally got herself into trouble and He Man with his massive sword had to save her. Off you go Freud – have a field day.

Dungeons & Dragons

Ok, this one was vaguely better (although I was pretty much always more interested in the DM as he was a pain in the arse and much funnier than the whiny kids – but again, with the girls in totally tiny skirts and the boobage… these are middle school kids. ew. Longer skirts, or some damned trousers and more irritating balding DM, he’s cool.

Always be the DM.

There were plenty of others… Knightmare being another most excellent one, although Knightmare was extra nerdy and I’m not even sure the contestants knew that there was a difference between genders…

And my kids are growing up to be in the same group of nerdy, game playing weirdos who ultimately grow up and make use of all of those hours playing puzzle games to be the smart adult with a job that involves the part of their body that benefits most from being wrinkly (their brain people). I love the fact that they are embracing the stuff that makes them excited rather than being drawn by the girly girl cliques that they are surrounded by. In actual fact, sometimes they do want to be pink and girls – for instance, TinyPants chose for her Darth Vader costume today: a Vader mask, black leggings, my black chiffon headscarf from Egypt, & a pair of flowery boots, over which went her Paddington Bear duffle coat. She was the most kick arse Vader in the room.

BeanPole on the other hand, decided to go a bit more obscure and dressed as R2D2. She loved what she chose and has decided that ‘next time I’m going as a wookie’.

It occurred to me, that just like with previous films, Star Wars pretty much doesn’t give a crap about gender roles and girls are just as double hard as boys. It’s a truly gender neutral franchise. No-one cared that my girls wanted to dress up as an evil telepathic dictator, or in fact a robot that swears so much that all of his lines are bleeped 😉

This particular film, did gender neutrality proud. Now, get out there and enjoy it with your sons, daughters, husbands, wives, whatever – it’s at the top of my favourite films ever. In fact, it’s the first time in years that I’ve ended a film in a cinema where a British audience openly applauded at the end.

No spoilers.

Expect Zebras : An App For EDS – First glimmers of a something

So, for those of you who kindly read and commented on my blog where I talked about my idea for an Ehlers-Danlos App and asked for your thoughts, and in fact anyone who happens to be popping past on here, the big news is that a prototype has started to make its way onto my phone. I’ve also decided to called it “Expect Zebras”.

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Thanks to so many lovely responses on both here, Facebook, and Twitter, I have a good few months worth of ideas even if I was developing full time!

However, I will share the first few exciting stages with you along with the first sections that will be developed.

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Home Screen With Possible Section Buttons

Version 1.0 is going to focus mainly on emergency support:

About me, takes your EDS diagnosis, record of medication, and emergency contact details to create a useful personalised fact sheet to show to medical professionals.

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You can add your official diagnosis on the Settings page, where you can also set the app to read the screens to you.

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I’m planning on adding other personal details here like your DOB, emergency contact details. So as all of these are personal bits of information,  they need to go behind a passcode. One bit of code begets more exponentially!

Next is medications. I’m not sure here – The simplest way would be to allow people to enter their own, but the risk of misspelling is huge, so a database of the common medications with levels adjusted as a when needed seems more sensible (this also means the slider bar for dosage can be adjusted to suit the drug). I shall ponder this…

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I initially thought about having this create you a repeat prescription request letter, but I reckon most people who would use the app, would probably use online prescription services.

Finally, for version 1.0 I’m going to add a panic button (or rather a range of). This will allow you to set a custom message for a standard – help! I’ve fallen, or help! I’m in too much pain to continue on my own text message to be sent to your emergency contac.  This will include GPS link to get to you.

Version 1.2 will come once I’ve perfected the screens above and will be my Brain Fog menu with things like tablet reminders, appointment reminders with notes, and voice recordings for those of us with sieve like heads.

Another thing I’m hugely excited about is EDS specific physio reminders. Before I entertain this though, I’m going to see professional help (a little too late some may suggest 😉 ) because I’d like to include images or videos to help.

Anyway, watch this space for a beta version on the Google Play store hopefully before the New Year.

As always, please leave your ideas and feedback. Even if you think the design looks awful! I’m making this for me and you!