Time to tell the world: I have Epilepsy.

Update posted by Ayesha Edwards On Dec 18, 2016

As I move forward, for now fundraising has come to an end. I will be back and I will raise money to go towards the people who need the funding but for now I will be moving across to solely blogging to raise awareness. Check out the link below and keep an eye out for updates!

https://timetotelltheworldblog.wordpress.com/

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Update posted by Ayesha Edwards On Dec 08, 2016

After being up and running properly for a couple of weeks and feeling confident about relying on the watch and phone to call for help when needed, this morning I woke up to some bad news.

Pebble have closed down to join Fitbit.

What's so bad about that?

In the email I received, Pebble did mention that there would be no immediate change to functionality of their products but it may change in the future. This makes their product unreliable to me. To the average smartwatch user, maybe this isn't ideal but not the end of the world either. However, I need to know that the item I rely on to help keep me safe will continue to work for as long as possible. Of course, things go wrong with technology everyday and it could stop working due to a technical fault regardless of the company's decision to move on with Fitbit, but knowing that this product is gradually going to be left behind makes it pretty much redundant for the purpose I need it.

I am working on getting a refund. But feeling pretty deflated about the whole situation. Hopefully, the company I purchased the watch from (as I didn't get it from Pebble directly) can help me out.

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Update posted by Ayesha Edwards On Dec 05, 2016

It's been a while since I last posted - the last couple of weeks have been such a roller coaster with appointments with doctors and.... getting back to work! Thanks to all you lovely people, I've got my Pebble Smartwatch and mobile phone up and running (under budget) and it really is amazing. I was also very lucky to receive a donation of an engraved medical alert bracelet so need to know info is accessible in an emergency. Yesterday, I did my first full day at work in a while and thanks to having the watch set up and being settled onto medication, I didn't worry all day.




To make it even better, setting up the watch itself couldn't be easier. Gave the watch it's first charge and paired it with the phone via Bluetooth, downloaded and installed the Open Seizure Detector App from the Google Play Store and followed the instructions for installation. For me, I found it to be a little too sensitive on the default settings so the watch would trigger the alarm on the phone (which makes a beeping sound) depicting a seizure had been detected when actually I'd been bushing my hair or even just sat in the car whilst moving. Changing the sensitivity was super easy as it told me how to do so within the app.

The only downside is that it drains the batteries on both devices as it is constantly running the app in the background and both devices have other things running too - including the Bluetooth connection needed for the devices to 'talk' to one another. The watch itself can still carry out the other fitness and smartwatch functions such as tracking steps, heart rate and sleep (really useful), as well as showing email alerts, and text messages (I rarely use these). Considering everything that can be done using this setup, its not surprising the battery drains quickly (although when I say quickly, they both go a few days without needing a recharge) but its hardly something to complain about considering what I already feel more confident doing. The watch face can also be changed with the Open Seizure Detector app still running in the background - my seizures are being monitored but people wouldn't know just by looking at it.

Donations are still being accepted and anything from here on out will be put towards getting another individual a setup similar to what I've been lucky enough to receive and making a donation to the epilepsy society. I've been told I'm over ambitious but I disagree - if I believe I'm being over ambitious, I'll lose the drive to keep going and I refuse to do that. It is possible, but it'd never be possible without you! Thank you, thank you, a million times thank you. You really are wonderful! x



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Update posted by Ayesha Edwards On Nov 18, 2016

I've just uploaded my second YouTube video where I talk through some of the questions I get asked about Epilepsy and having seizures. I do cover what it feels like for me to have a seizure so some might want to skip over that, although I have tried to keep it as lighthearted as possible considering the topic!

Check the link below and thank you all again for the amazing support I've had!



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Update posted by Ayesha Edwards On Nov 14, 2016

So, I've just added a reward system to this page - donate £5 or more and receive a spoon charm to add onto a necklace or key ring; keep it for yourself or give it to someone who needs a bit of a boost that day. I wear a spoon charm on a necklace every single day - I have it on a piece of cord so I never actually take it off. I've given them to friends and family who I feel really need them - as a way to tell them to keep going and that I'm there to help them if they need it...

But, why? What is the spoon analogy?

The spoon analogy is not something that I came up with but read about online - written by Christine Miserandino, her original story is available to read at: www.butyoudontlooksick.com but I will describe it more briefly here.

A friend had asked Christine what it was like to be sick, not necessarily the day to day aches and pains or having to take medication, but what her experiences were of having to get through each day with her condition; what was it like to be like her? What was it like to be sick? At the time, Christine and her friend were sat in a diner surrounded by empty tables as it was late in the evening. All of the spoons from every table were gathered and Christine began to explain to her friend that the spoons she now had before her represented her illness. Her illness was represented by the 12 spoons that were now in her friend's hands. Being healthy assumes that you have an 'unlimited' or at least more 'extensive' number of spoons available to you to get you through your day, but when you are ill it is important to know how many spoons your are starting out with; each thing you complete 'costs' you a spoon (or maybe more than one spoon) - don't jump too far ahead, even the smallest tasks like sitting up or getting out of bed could rob you of a spoon or two. Choices have to be made and you constantly have to assess and reassess how you use your spoons. It varies, some days you have more spoons than others so more tasks can get completed - but don't forget, doing 'fun' things take up spoons too! If you only have 12 spoons for the day, it might only take an hour and you feel like you've already run out - those days are hard.

Christine finishes up her explanation by saying that she has "learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

This is why I wear a spoon charm - to always have one in reserve and be prepared. If I really find it hard that day, I always have a spoon left to pick up the phone, or send a text to someone close to say I'm finding the day hard. A lot of my close friends are now so familiar with the analogy that all I have to say is 'I'm outta spoons today' and they give me a hand where I need it - no questions asked. If I'm out of spoons, I often can't even fully explain what it is that's wrong but this way I don't have to.

Through this we can spread the word of Epilepsy but also the spoon analogy. It can be applied to any type of illness or disability or even just to someone having a bad day!

Thanks again for all the support - keep reading, keep sharing!



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Update posted by Ayesha Edwards On Nov 11, 2016

As with any new diagnosis, you can expect to have to attend numerous appointments. In my case this is mainly with the GP and the neurologist. It has been a battle with the neurologist I (up until recently) saw only once a year. Luckily, I have been able to see a different neurologist who has confirmed my diagnosis and I am due to see again in the new year.

As for the GP, you may be surprised to read what I am about to say...

I had an appointment booked in with my GP just for a catch up and to get some onward referrals – I haven’t actually met her before but she booked me in for a double slot so we can cover all bases. She couldn’t come into work that day as her parents are pretty unwell and she needs to care for them – no problem at all, things like this happen.

I was called in by a doctor who explained when I sat down that everything was a bit last minute and he hasn’t had the opportunity to read over my notes – again, no worries. He asked me about some of the problems I’d been having but interjected every two seconds when I tried to offer my explanation of the difficulties I'd been facing. So, eventually, I gave up and handed him a piece of paper where I’d written down a list of detailed information. One of my points was my memory (the medication I am currently trying can interfere with that) and that it can lead to me to forgetting to eat (it also suppresses the appetite) to which his response was ‘well, you need to remember to eat’. Really? Cheers pal.

The conversation progressed and I wanted to find out about sorting out things I’m entitled to with this new diagnosis – as you know, I’m not looking to get my hands on a tonne of benefits here (if I don’t need them I won’t claim), but I know I can get free prescriptions and discounted travel as my licence has been revoked - these things will be very useful and will also increase my independence (especially once I have the option to do more things by myself). His response was ‘you are entitled to nothing with epilepsy’. Wait, what? I mentioned my awareness that some of these things were in fact available and I didn’t know how to access them... Epilepsy is the most common neurological condition in the human race and whilst I appreciate that a GP is expected to retain vast amounts of knowledge about a huge variety of medical conditions, I have to admit I did expect him to be aware that Epilepsy has significant limitations of which are supported in various ways. There were other elements to this appointment which were unsatisfactory however need chasing up officially before running comment as part of this campaign.

Just recently, I had been wondering if perhaps my campaign was a little redundant due to the copious amounts of information available freely on the internet. However, this experience will be pushing me even harder to raise awareness of epilepsy, the options available and the best way to access them. In the last few days I have been in contact with the Epilepsy Society and volunteered as a fundraiser and media contact.

This campaign will continue.

It will be a success.

But I need your help to get it there.

It might gain momentum overnight.

Or it might take a long time.

But it will be a success.

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Update posted by Ayesha Edwards On Nov 06, 2016

I am blown away by the generosity of everybody already and want to thank you all - we're already 1/3 of the way to my minimum target which will also allow me to make some donations to the individuals and organisations which really need them! Thank you, thank you, thank you.


Since setting up this page, I've been thinking about ways to boost things even more. I've been busy trying to contact local Facebook groups who have a large number of followers. However, many of these groups have a no-crowdfunding policy - fair enough but this doesn't get my story heard (although I won't be giving up). Please keep sharing the link in as many ways as possible! In the next few days, I will also be bombarding you lovely people with some videos - if you have any questions or suggestions, pop me a message and I'll do what I can!).

So, what else have I been doing? Thinking. Thinking and creating. The advantage of beginning my business from home is having the opportunity to take an idea and run with it. Today's make was a simple one:


Embroidered felt badges with the widely recognised medical alert symbol - red and purple (as the commonly used colour for epilepsy awareness).


(Image quality will be better if you are viewing this on a mobile device - if you are on a laptop. please excuse the potentially fuzzy quality!)


Sew on badges to draw attention to more detailed medical alerts such as a bracelet or necklace. There are probably similar items already available, but there really is something satisfying making something yourself - even more so when it has the potential to help someone else.


Stay tuned for even more updates - thank you again for the support!







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Donate £5.00 Or More

For every donation of £5 or more, you will receive a spoon charm. I wear a spoon charm on a necklace every single day to remind me to keep going. Want to know more about the spoon analogy? Check my latest updates! I\'l also include a hand written note - please remember that you will need to provide your address for this!

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Anonymous

Backed On Nov 16, 2016 Amount Hidden

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Anonymous

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Gail Grimshaw

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Keep fundraising! .. well done your amazing xx

Vikki Gaffney

Backed with £10.00 On Nov 09, 2016

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Tea Onerhed

Backed with £20.00 On Nov 09, 2016

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Barry offered up an oat. That's a pretty big deal.

Steph Rayner

Backed with £10.00 On Nov 08, 2016

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Mollie Woodward

Backed with £5.00 On Nov 07, 2016

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Getting yourself some independence is always great, I hope you make your target. You can thank Dan for his fb share. Good luck

Ollie de Rosa

Backed On Nov 07, 2016 Amount Hidden

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Anonymous

Backed with £25.00 On Nov 06, 2016

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Evie Debreczeny

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Ayesha Edwards

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