When The Going Gets Tough, The Tough go and have a little cry in the corner

I don’t often blog about the reality of teaching. It’s what one would describe as a CLM (career limiting move). But despite that, here I go nonetheless. Mainly because I need some sleep which means this scenario rolling around in my head needs to be fed to the ether and go away.

I profess about being fine and dandy in my wheelchair. And to a degree I am. It’s my safety net, my means of mobility, and a damned fine piece of equipment. It’s also a bit of a prison. It makes me physically lower than any child I teach who stands up. It makes me feel vulnerable…. And like hyenas, kids in senior school can smell the fear of a teacher.

This particular class is year 8 (that’s 7th grade in the US), so one of the youngest  years in the school. I’d had two hours of incredible lively and productive lessons with them where they are creating animated videos about how words and images are stored as binary. The kids were lapping it up and I was throwing house points about like it was Hogwarts.

Then it changed. My classes have a seating plan so I know who sits where and I can manage behaviour. These two particular boys were not going near each other (a few weeks back  I’d already had to put myself physically between them as they went nose to nose, and that was going to happen again over my dead body). So anyway, my classroom, my rules.

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Or not apparently. At age 12, we deem it acceptable to shout across the room “I’m not moving, what are you going to do about it?”; at age 12, we deem it acceptable to square up to a female teacher with clenched fists; at age bloody 12, we deem it acceptable to be physically threatening towards a member of staff and then verbally threaten them. What a charmer!

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Because of the physical surroundings & availability of staff at that time, I had to take a decision over whether I backed down and lost authority for the rest of the year with them, or stood my ground and face what I perceived to be the very real possibility of being physically assaulted. (I’ve been working with volatile kids for long enough to tell which ones are mouth & no trousers and which are ready to swing). I trusted my gut on this and ditched any respect – this was the first time since I left youth offending that I’ve felt genuinely concerned for my physical safety. My decision was based very much on the images in my head of the level of damage that child could do. If standing up can take out a hip, what would a punch thrown in anger do? I certainly don’t have the speed or mobility to duck.

And so here I am at nearing 1am with the scenario rolling around in my head.

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Legally & contractually I cannot refuse to teach this child. That’s not the way through this anyway. There is an inception style level of issues that this has raised for me.

Top level: What string of events has led this child to think that it’s acceptable to be physically threatening in order to get his way? I’m angry at myself for backing down as any threat I make now is useless (I threatened management, but they never came).

Dig deeper: What have I missed that could give me the key into a positive dialogue? What if that had been another student he tried to intimate?

Dig deeper: I allowed myself to be intimidated by a 12 year old. And the class saw. Most are just used to him & roll their eyes – how is that fair on them? What if we’re not seeing this happen to others? If I was scared, how does a tiny year 7 feel?

Dig deeper: is this about one child kicking off, or a deeper fear that I don’t have the same authority that I had as an able bodied teacher? Without the same mobility or ability to physically defend myself, should I be teaching?

And there’s the big question. This year I have seen a marked increase in aggressive behaviour, but also a marked decrease in support from parents (gone are the days of a phonecall home resulting in punishment – it’s now more likely that they’ll be a complaint about you picking on their darling little thug
Before you grab your pitchforks, 90% of the kids we teach are amazing. They shine. I love spending my days with them, but that 10% is killing your child’s chances of getting the new, harder levels expected because of all the disruption. If your child is that 10%, I’m here to help you, but if you fight me as much as your child does, the overseas job sounds much rosier, as does developing that app.). If there are not systems in place, not just in school, but at home as well, to demand a level of respect for those adults in charge, is teaching a career for someone with a physical disability? In fact, is teaching something anyone would want to do?

Edit: this took me a few days to post as it shook me. I’m still questioning my personal safety, but moreso my competence as a teacher, because it’s what we do as teachers…. WWW & EBI (what went well & even better if)

It’s Happening & We Need Your Help!

The last week has been a bit crazy, but it looks like we climbed the ladder of this app idea and instead of slinking back down like scaredy cats, we’ve thrown ourselves down the deathslide of startup business and friction burns are in the not to distant future!

But we need a bit of help from you lovely people….

I know surveys are boring, but if you have a few minutes could you answer a few questions to help us get our heads around the kinds of things you guys need, or share this, or tweet a link to the form for other chronic illness people out there?

https://docs.google.com/forms/d/1QMIsaZHbK6ysVtMAcCSy5sfjqAsNVLQ4lGVDqrFNBqQ/viewform

Or use some other kind of social media that I’m way too old and boring to understand? Xxx

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As always, Nice to have you here.

The Zebra Stole My Spoons

There’s this lady I know who has inspired me to be a bit more kickass than the boys despite being in a male dominated industry. There aren’t many people who can keep a bunch of nerds in check and stop the regular as clockwork Creative Tantrums and not lose their mind.

Anyway, not only can she corral the nerds, but she’s also a fabulous illustrator and has created these bad boys for our Expect Zebras app. We’re so drawn to the second one and his cheeky face, but the first one has a simplicity that would be easy to work with and reminds me of a sock toy. Uuugh! What do you think?

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I can’t wait to see one of these guys on all our stuff. I never expected these Zebras – what a lovely surprise!

It’s OK To Want To Feel Attractive

Chronic illness comes with a range of symptoms; pain to hair loss, muscle weakness to incapacity, none of it is particularly fun. We have a whole host of doctors, specialists, and medical professionals trying to make us better, or at the very least alleviate our symptoms to the best of their abilities.

Over time, we become a medical file. Because, you’re primary aim is to get better when you’re ill. Isn’t it? All those drugs are helping, despite the side effects that make you gain weight, make you lose weight, make you nauseous, make your hair fall out, make you exhausted… It’s worth it?

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Sometimes no. Actually, sometimes feeling normal is your primary aim. Sometimes feeling attractive is your primary aim. Sometimes just not being defined by this bloody illness is the ultimate aim.

Some days, getting “better” is more for other people than it is for us.

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The bit that is for us rather than other people is eating that fully gluten cake because, fuck it. It’s wrapping our hair in a million scarves to feel attractive. It’s handing you the oil and asking you to rub the sore bits (for reference, that’s all the bits). It’s you telling me you’re good with just cuddling. Possibly forever. It’s also the understanding nod when I’m snappy because I’m sick to death of my body not working and I’m just raging at the world.

Being the corpse bride isn’t the most fun experience in the world, but it’s actually OK to have a temper tantrum about it. Enjoy the things that make you feel human. Just don’t forget to look after yourself too xx

Brexit – A Kids Breakfast or An EU Referendum

To quote the words of a friend, a Brexit is not in fact a toddler’s mispronunciation of breakfast, but the possible exit of the UK from the EU based on the voting of the masses. It’s now been officially announced that the vote will take place in June and will likely be used as a fabulous shiny distraction from the crappy things the current government are doing to the more vulnerable. (Cue onslaught on “liberal leftie” comments below).

I’m not really one to take propaganda at face value, so decided to look at the reasons for and against a Brexit on a personal level … Nope, still sounds like a toddler breakfast…

One major factor in my life right now is my physical disability. I make no secret that I am a wheelchair user and despite a chronic pain condition am also a full time member of the workforce. I Googled EU benefits for disabled (looking for the dictionary definition rather than the monetary kind) and found the European Commission page on Disabled benefits determined by the European Human Rights Act.

Its objectives are pursued by actions in eight priority areas:

1. Accessibility : make goods and services accessible to people with disabilities and promote the market of assistive devices.
So, without this protection the UK could make accessibility an opt in feature. It’s already not great in the UK and because it’s costly this objective could impact greatly on the ability of people with physical disabilities to participate in daily life. Off the top of my head, this could affect the insistance to provide ramps, parking spaces or hearing loops in the effort to save some money.

2. Participation : ensure that people with disabilities enjoy all benefits of EU citizenship; remove barriers to equal participation in public life and leisure activities; promote the provision of quality community-based services.
This could be interpreted in many ways. Could this mean that councils might not be forced to provide adult social services? Buses with ramps? Airport assistance? It’s all costly & with a Government that sees it’s current disability assessment process as fair, they could just as easily see working hard to provide your own equipment as fair.

3. Equality : combat discrimination based on disability and promote equal opportunities.
It’s already hard enough to arrive at a job interview with an obvious disability. The removal of this could allow employers to not interview, or just fire you once a disability is identified. My employer has been incredible, but I know that I am already very lucky even with this in place.
Discrimination can however be seen where airport staff won’t address you, or staff sigh and grumble that “it’s just a few steps”.

4. Employment : raise significantly the share of persons with disabilities working in the open labour market. They represent one-sixth of the EU’s overall working-age population, but their employment rate is comparatively low.
Right now, the reason I am able to continue working is down to the assistance I receive from Access To Work who co-fund a wheelchair accessible taxi, and perform an accessibility review every few years. They give a list of devices required to help me perform my role in the best way I can (such as trackball mice, or movable armrests). Without this help, I couldn’t continue with my role – with it, it’s hard work but the support is physical and mental.

5. Education and training : promote inclusive education and lifelong learning for students and pupils with disabilities. Equal access to quality education and lifelong learning enable disabled people to participate fully in society and improve their quality of life. The European Commission has launched several educational initiatives for disabled people. These include the European Agency for Development in Special Needs Education as well as a specific study group on disability and lifelong learning.
My CPD must be accessible. This also comes in the form of providing text to speech so that I can listen to notes when fatigue hits rather than reading through overstrained and bloodshot eyes.

6. Social protection : promote decent living conditions, combat poverty and social exclusion.
There’s enough out there already on the degrading process of applying for PIP, or ESA. As a well educated person with few mental health issues, I can confirm that it was one of the most dehumanising and distressing processes I have encountered. This is a rant for a different post.

7. Health : promote equal access to health services and related facilities.
I rely on the NHS to hold the stupid bendy pieces of me together. Imagine if we could only get treatment for things that were curable in a cost effective way?

8. External action : promote the rights of people with disabilities in the EU enlargement and international development programmes.
When you’re not the cookie cutter model of the “hard working taxpayer”, there’s always going to be a fear of being marginalised. It’s not that far fetched.

Objectives obtained & copied directly from the European Commission Website.

It’s an awful lot of protection that I’m afforded by being a European citizen and yet I can’t find anything to identify how being in the EU makes it worse for those with disabilities.

Clearly, this isn’t the only issue that matters, but it’s a start…

Stop Being Sick, You’re Making People Stressed

I feel like a bloody salmon at the minute. As soon as I get my shit back together and start swimming upstream, I get to the top to either fall back down again or be eaten by an opportunistic bear. I am using everything in my arsenal to hold it together mentally and not have a proper poor me pity party over losing my ability to get out of bed or make my own cup of tea. I’m not one for self pity, or pity of any kind. I find it boring, especially when it’s me that’s doing it.

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Today we travelled back from Ireland – the sum total of 7 hours in planes & automobiles (no trains) and arrived home at 9pm spoonless and close to vomiting from pain.

Some months ago at my PIP interview, the guy who interviewed me turned solemly to Mr Geek and said “Watch her. She’ll put on a brave face then all of a sudden will hit rock bottom. Just watch her mental health.”. We shrugged it off.

Since being diagnosed, I have not mourned the loss of my physical capabilities outwardly. I’ve internalised it and it’s manifested in me not sleeping and I’ve subsequently grinched about it on here, but I’ve just got on with life because that’s what you do. I’ve not given up work, I’ve attempted to continue with life as normal, I’ve played down my pain levels whilst gently introducing everyone else to the idea that they need to live with a disabled person.

Occasionally, I am snappy with Mr Geek because he forgets that I can’t do something, or I ask him to do things for me to maintain this quality of “nothing is wrong” life. He is a good man & I lean on him. If anything, I snap at him to make sure the things that wind up other people in the house are done, or something for the kids. The things I personally want to do come much lower down the list, unless it’s pain related.

This evening, after yet another wonderful experience with people who claim to be accessible, I was not in the mood for a “you’re doing it wrong” conversation.

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But I was treated to one anyway.

I was informed by my Dad that over the past 9 months of my getting ill, Mr Geek’s stress levels haven’t just doubled, or quadrupled, but multiplied infinitely and that that was because of me. He’d “noticed” that I was overly demanding of Mr Geek. The exact phrase used was “I couldn’t put up with what he deals with”.

I explained that it’s not easy to lose your independence & yes I know I snap sometimes, but it’s frustrating when you cant do things you once could. I was cut short and told “that’s not his problem, that’s your problem to deal with”. This was followed by the offer of help from him & my mum to sort out caring for me (having already said, under no circumstances do I want them doing that –  I’d prefer to have an outside carer. ).

Now I know he meant well & has Mr Geek’s state of mind at heart, but that little thread of sanity I’d retained just snapped.

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So let’s all really say what we’re thinking shall we? Whilst we’re goibg for subtlety. You’re meant to get ill, go to the hospital and get treatment then get well again or die. Well, I’m not doing the latter so instead at best I’ve got another good 30 years of being in daily pain with more and more joints popping out and various organs prolapsing, & at worst add in my current GI & dysautonomia issues getting worse. That’s my whole lifetime again without sufficient drugs to mask the various lightening bolts and spasms, or eye-splitting headaches, then the possibility of tubes for food going and and out.

I try not to look at that big picture, because down that road lies maddness and a one way ticket to Switzerland.
This is much more manageable taken one day at a time with future plans being fuzzy in case they need to change. Taking small steps also allows for an inkling of hope that this might get better. One bad day can’t go on forever, or at least that’s my positive hippy dippy thinking.

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I’m aware that this is just another one of those cycles that you go through after becoming ill, but having been raised to not have a healthy outlet for my anger, I get to sweep this under the carpet and trip over the lump.I know that it’s actually OK to rage over the injustice of losing the life that you imagined you were going to have. I also know you get over the raging and become a human being for the other 90% of life. I know that Mr Geek gets it and encourages the blogging because it is fucking infuriating not being able to do up your own arsing bra.

What this doesn’t stop though is my overwhelming urge to go to bed and not bother getting back up. If it’s my problem then I’ll stop trying to make it easier for everyone else and deal with it my way.

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Raindrops on Kittenscl. And mittens on snowflakes?

Dear Mr Geek,
I’d like to write something profound about the rejuvenating qualities of spending time with your best friends.  Certainly calmer and a bit more pragmatic than I was a few days ago.

Due in part to my brain soaking in oramorph, I will stick instead to a Julie Andre’s style list of things that you do. A few of my favourite things if you will…
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Making light of things with blatant innuendo. You see the breast in everyone.

Kneading my shoulders. I wind myself up tighter than a tightly wound thing and add to my muscle knots and tension headaches by being Anxiety Girl. You methodically go through and untangle those muscles and manage to calm my nerves at the same time.

Providing food. It sounds simple doesn’t it? But I just wasn’t in the right place to start eating today and the “better” feeling from fasting is alluring. You tempted me with nuts & chocolate until I stopped wearing the retaliation from my intestines for eating.

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Technically, food credits here go to Mr GypsyTree. Oh this was SO good.

Stroking my hair. This one is odd. I don’t like other people seeing the current state of my hair and so it highlights how comfortable I am around Mr & Mrs GypsyTree having unwrapped my scarves this evening. But instead of wanting to hide my hair from you, I like that the hair that is left is kept back as a gift for just you. What this means is when we lay in bed and you stroke my hair, it’s so much more intimate and creates a little bubble around us where everything is OK.

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I’ve felt so unwell this week and I appreciate that you’ve recognised that and adjusted yourself accordingly even though you’ve been stressed out of your mind too. Things always feel much better when we throw poop at it together. We’re a team. And even if I am barely able to string a sentence together, I love you very very much.

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A Genetic link for EDS 3? Or a desperate doctor needing answers?

I came across this doctor’s website via a Facebook link. It’s quite clear that she is desperate for answers as a sufferer herself and as such has devoted her work to finding out why she has gone from a healthy, outgoing type albeit a bit bendy and achey, to a physically disabled introvert with enormous anxiety issues.

Whilst this was an interesting read, it must be made clear that the medical journal that this was submitted to declined to publish her research.

An interesting and rather long read.
I was interested to see how she linked mast cell activation to possible genetic markers for EDS 3 which correlate to both hormones and the ability to react to acute and chronic stressors – not mental, but triggering EDS symptoms to worsen suddenly after a particularly bad infection which is what we think triggered my descent into merry hell, or a chronic infection such as Lyme which stimulates the genetic marker.

I share her desire for answers, but admittedly, whilst i recognise some of the anxiety & perfectionist traits described, I nonetheless resent her link with mental health and stress induced physical illness. There appears to be an insinuation that Mast Cell Activation is a consequence of an inappropriate reaction to stress.

http://www.rccxandillness.com/theory-for-patients.html

TLDR;
EDS 3 may be linked to a genetic marker.

That marker is linked to mast cell activation (MCAS).

This allows other issues to be activated at the same time (POTS, CRPS, CFS, MS).

The activation is caused by a stressor such as an acute or chronic infection.

Links to how progesterone are used to combat stressors explain why women are affected more often and symptoms worsten before menstruation.

Specific personality types are identifiers for those who may later develop chronic illness through EDS. ( :/ )

The marker identified also has links with specific mental illnesses.

Just keep swimming…

As a general rule, when people do the whole “I don’t know how you stay so cheerful” speech I just look (and feel) uncomfortable until they’ve run out of metaphors. I just attempt to get on with life and splurge all my frustration out in my blog instead of at real people. But this evening I’m awake past a reasonable hour yet again and wondering if I just don’t sleep anymore.

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I’m not going to lie, despite it being half term and being at home, this week has been quite shit so far. We’d just got to a place where I could step back and assess the spoon situation and start looking at ways to maybe improve my health, then something unexpected and more than a bit scary starts tapping on the tank. Wake up fishy! Why are you sleeping?? Probably because I was blogging at 1am again.

I’m not my generally perky self right now. This could be related to having fully dislocated my shoulder last week which is still bothering me, this new work issue, increasingly dramatic looming threats of Ofsted and a general sense that I actually have no control over my personal standard of living. And there we have it in a nutshell. I am a control freak. I’ve lost control.

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Each morning I need someone to help me get up and dressed – I hate this, but it’s a fact of life. Right now, Mr Geek does this at a time and speed that generally suits my needs. What if he couldn’t do that? Do we have the financial reserves for a carer? Would the kids cope? If we did have to rely on a carer, could I be sure that I’d be ready for work on time every day? Would it be dignified or would I get yanked out of bed by someone constantly watching the clock and tutting at someone too young to be needing help from others?

My appetite is sporadic at best. I fly from nothing to everything and it’s not based on hunger, but my emotional state. I rarely eat from hunger anymore. What if Mr Geek wasn’t here to remind me to eat? He cooks the things he knows I will eat and that won’t make me ill. He sneaks vegetables into my soft, bland carbs. He accepts that me sipping on slimfast is better than nothing when my stomach doesn’t want to play. What if he wasn’t here to regulate my diet? Can I live on slimfast and gluten free pretzels?

Financially, we need me to stay working. We’ve looked at it objectively and are acutely aware that I’m fading fast in terms of stamina at the lower end of the year groups. Being in a chair doesn’t command the same type of authority as much as I used to and I arrive home exhausted. Where I once would put in another 3 hours of marking, I lay in bed on a heated blanket letting the oramorph do its thing. If Mr Geek wasn’t there to help me undress and crawl into bed, what would I do? I know the kids would help out, Tinypants has certainly helped me undress a few times and lives sitting in bed watching Netflix with me in our PJs. But how awful for them to not be shielded from my worst.

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We’d created a routine that had not only shielded the kids and the world from how bad things had got, but also me to an extent that I hadn’t realised before. Mr Geek does so much for all of us so discreetly that it isn’t until there’s the concept of him being taken away that it hits home.

It’s not just that I’d miss him (and I would, because he is my lobster), but this once fiercely independent woman actually can’t get out of bed without his help. Even if that’s because mentally, I’m not ready to let someone other than a very few select people see me naked. Of those handful, distance and health rather scupper any backup plans. Welcome to the inner selfish thoughts of the physically ineffectual.

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I wish there was a way to wave my magic wand and make everything better. I wish I could stick my usual fake smile on and keep going, but when Mr Geek being happy looks on rough ground, my lioness instincts kick in and I get frustrated that I can’t kick arses like I used to.

The previous me would’ve got angry. The current me just feels anxious and isolated.

The only thing to do is just keep swimming…

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Expect Zebras – The Chronic Condition App : Joints just got serious

At Christmas I got utterly overexcited about a concept App for EDS and related conditions. We created version 1.0 with some of the basic functionality, but no cross platform compatibility (it only works on Android phones) and only a few features. Still, it was a start.

This week with more dislocations & some inyeresting work antics has given us a firm shove towards creating the everso slightly more awesome product that we had envisioned. The concept is more complex than just an app and will shortly be appearing on Kickstarter (we’re working out our minimum goal right now as the biggest outlay is getting a whole load of wristbands & keyfobs printed & encoded).

As someone with EDS, POTS, CRPS and other fun that goes with it, I needed a fair amount of help organising my life (major brain fog altert!). As the possibility of a personal assistant was looking unlikely, we wondered if we could use our background in programming to create a solution. What if I could use my phone to record when I took medication? What if I could get a reminder when I’m due my next dose? What if my husband didn’t need my phone to see what I last took and when? Ooh what if that could be combined with wearable tech? [Insert nerdgasm here]… So we got going.

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Expect Zebras is a connected wristband (or keyfob), app & website trio allowing you to be an expert patient and fully in control of the management of your condition by putting your data at your fingertips. Allowing you to use objective data to give you the confidence to talk to your caregivers assertively whether they be your primary doctor, specialist, physio, or carer.

No more leaving appointments in frustrated tears because doctors won’t listen. Appeal to their natural scientist with clear data, presented in a medically understood format.

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The Wristband
Worn like a watch, and totally waterproof, this uses near field communication, much like your contactless payment card, except it gives you the ability to hold access to your emergency medical information through connection to a mobile device. In the event of an emergency, you can choose to have anything from just your diagnosis & next of kin phone number to full details your medication, routines, and scanned documents available via a mobile web page with a pin accessed via the back of the band. No app required, making it easy for medical professionals to help you quickly using just their mobile phone.

As you update your app whilst wearing your wristband, the data on your wristband updates too!

The App
Allows you to access and update your web account & will also allow additional functionality such as a panic button with current location via GPS which sends a distress SMS to your chosen next of kin or carer, converting photos of letters / medical notes to PDF files to create your own version of your medical notes. (I found this particularly useful last week when I was in A&E), or taking a video of your physio exercises to replay with a timer / rep count. For POTS sufferers, an additional feature of heart rate recorder & graph will be included for those with compatible phones.

The app will be free to download but will require an online subscription to save & backup data to the website.

Combined features with the wristband are to update the time & date when you last took regular medication with a reminder on the app for your next dose. Dates to remind of medical appointments, when to order repeat prescriptions, and allergies.

The Website
Whilst an app is great for data required on the go, the website provides a place to view your scanned files, reports on when and how often you are taking medication (coupled with your pain level ratings) recorded from the app.

From the website, you can download doctor, physio, and carer friendly reports in PDF format to print or email to your care provider. Your report will be customisable with filters for dates, symptoms and graphical analysis.

Combined features with the app & website will include medication taken can be updated by scanning a printable barcode for each. By sticking these onto your medication box or pill box and scanning each time you take a dose, you need not type in your medication more than once. By updating your “taken medication”, the app will record your time & date of dose and synch the data with the website & wristband.

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There’s a lot to do, and the wish list is extensive. But with a condition that on average takes 10 years to receive a correct diagnosis, sometimes you have to fight science with science.

To keep up to date with our progress, please visit and like our Facebook page: http://www.facebook.com/ExpectZebras  or follow us on Twitter – @ExpectZebras.

We also need help from people with chronic conditions to tell us what they want from the app : Please complete the quick survey to help here