Epilepsy Blog Relay - Tech and Innovation in Epilepsy

This post is part of the Epilepsy Blog Relay which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!

Hi!!

So, I'm taking part in a Epilepsy blog relay that's running for an entire month with input from many amazing people who's lives have been touched by Epilepsy in many ways, how exciting! I have to admit I'm very snowed under with college assignments at the minute and trying my best to sleep every second I can get free plus I've got a heavy case of Carbamazepine brain fog going on. So I may have cheated a little bit and used a previous post of mine that just so happened to be on my chosen topic of Tech and Innovation in Epilepsy. I also have to admit that ironically I'm not very good with technology myself and I'm seriously hoping that this post will go live at the correct time... I just spent a good while trying to figure out the time difference between Eastern Time in America and Greenwich Mean Time in the UK (we're 5 hours ahead incase you're wondering..). Anyway there's me babbling on usual here's my blog on my wonderful piece of Epilepsy technology that is literally a life changer!

This is the Epi-Care Free sensor and I can safely say it has truly been a lifesaver! I'm head over heels in love with it simply because it's given me some of my independence back. It means I can live alone again with my mind slightly more at ease knowing that when I experience a seizure someone will be contacted to come and help me. 

Right, let me explain how it works... (with pictures whoopee!)

This is the sensor itself. It comes in a handy wrist watch design that is very lightweight and fully adjustable to for even tiny adult sized wrists (yay). When I have a tonic-clonic seizure the sensor picks up the odd and repetitive movements and sends a distress signal over to the sensor box...





The sensor box which you can see in the picture is about the size of a little house phone and sits in the corner of my living room plugged into the mains. Upon receiving the distress signal from the sensor watch, the box sends out an alarm call. This is a very loud beeping sound that alerts anyone that might be in the house at the time. On top of that the box also sends a signal over to the Telecare system...

The Telecare box is linked up to a dedicated call centre via a landline in my bedroom. It is essentially a hands free telephone, you can see there's a speaker on the box and various buttons. When the Epi-care box starts alarming the Telecare box automatically dials the call centre for assistance. Once connected, which only takes a matter of seconds, a member of staff then talks through the speaker to see if they can get a response from me. Obviously if I'm still having a seizure I will not respond. In this case the call centre then tries to ring my mobile phone to see if I answer (incase its a false alarm). Again I'm not going to be able to answer if I'm seizing. They then start calling people I have chosen to be my responders. Failing anyone answering their phone and being able to come and help me, the emergency services will be called to my address. I can also simply press the big red button if I feel an aura or otherwise unwell and the call centre will arrange for someone on my list to come over and see me so I don't have to figure out my phone etc if I become confused. 

It's all very clever and I can report that the system does indeed work! The sensor also picks up "wandering off" so if the sensor goes out of range of signal the alarm will be triggered. I'm lucky that it has this feature as my complex focals are on the rise at the moment and tending to cluster.. apparently I like to wander off. It does mean however that I absolutely have to remember to take the watch off before leaving the house!

It's great as I can wear it almost all of the time so whether I'm awake or asleep a seizure will be picked up. The one thing I can't do is wear it in the shower. So instead I have a little pendant which has a button on it to press that I keep in the bathroom. If I wake up after a seizure in the shower I can press it and the alarm will be triggered. Sometimes though I simply don't wake up after seizures so to make myself extra safe I always call either my landlady who lives down stairs or my friend to tell them that I am about to have a shower and call them again when I'm out of the bathroom and have the watch back on again.

I hope that makes sense! I'm very lucky to be able to have this system in place and I am incredibly thankful for it.

NEXT UP: Be sure to check out http://livingwellwithepilepsy.com/category/emilys-perspective for more on Epilepsy Awareness!

"15 things" My writing on Epilepsy published online

Yesterday something really exciting happened, metro.co.uk published some writing of mine! 

Illustration by Daniella Birtley for Metro.co.uk

Here's the LINK if you want to take a peek. 

It's called "15 things you only know if you have epilepsy" and has been shared and read so many times already which I am unbelievably happy about. The more people reading it the more people who may learn a little something about Epilepsy that they may not have known before. 

It is my opinions which I have to make clear not everyone will agree with!! We're all different after all and will experience things differently from others. My aim though was to give a lighthearted approach to raising some awareness of what it can be like living with Epilepsy and seizures.

The illustrations along with the piece are awesome and NOT my own they were commissioned to go along with the piece by metro.co.uk. This is a link to Daniella Birtley's website who created the above illustration that was first published with the piece. 

I hope you enjoy! 

Extension please?

One of the things I really don't like doing is asking for extra time on course assignments.  In fact I rarely ever do - even if I really should and the tutors even suggest taking some. I'm stubborn. Thankfully the course I'm studying doesn't have exams (woohoooo) but we do have countless written assignments. From the first month of the course there has not been a single day where I have had the pleasure of thinking "ooo I don't HAVE to do any course work today". That or get that guilty feeling when I've had the time to do some writing but somehow I've ended up spending the entire day doing everything else possible not to get any work done. My apartment has never been so clean and tidy. 

Last week though I had a rough few days in a row that started with a cluster of focal seizures right in the middle of class. Not pleasant/fun/exciting in any way. That lead to a massive decline in energy, motivation, ability to think straight for the few days RIGHT before a massive deadline. Any energy I did have left went into sitting and writing something I'm really hoping makes at least some sense to hand into my tutor for that particular unit. And I did, right on time. Then went home and slept for an eternity. 

Today though I'm back to my usual self, went into class and did the usual classroom things.. like learning and trying not to get distracted by friends taking endless hilarious selfies. Needless to say I didn't get much done.. my concentration is bad at the best of times. So here I find myself looking over the assignment brief with a deadline of two days time and I'm writing on here instead. There's a ton of information we need to cover in order to get the grades and just looking through the relevant textbooks makes me want to sob. This assignment was set a few days before I went into a seizure melt down mode and so this evening I've messaged my tutor to ask for a POSSIBLE extension on the basis that those few days could have been far more productive than they were for obvious reasons. Urgh. Possible in that hopefully I won't need an extension.. but be prepared for me asking for one on deadline day and not wanting to explain why in front of the entire class. I'll aim for the deadline and hope I've completed it by then (and not blown away somewhere in these stormy winds!!!).

I also bought some bright new lipstick to make myself look and feel better. So that was nice. x

Life in 2016

Hello! Long time no blog... Happy New Year!

Life in 2016 is very busy at the moment. It pretty much looks like this...

Studying my Health and Social Care course
Sleeping
Volunteering with St John Ambulance Cymru
Sleeping
College Placement hours with the ambulance service
Sleeping 
Trying to make it through the day seizure-free (which doesn't always go to plan..)
Sleeping
Teeny tiny patches of a social life
Sleeping
Assignment writing
Sleeping
Medical appointments
Sleeping
Exercising
Sleeping
Anything else that crops up
Sleeping

Seizures come along and turn my days upside down as usual when I'm least expecting it.. despite always expecting it. It's hard to fit everything in whilst trying to get a sufficient amount of rest and sleep in-between. I'm forever hearing "Jade you need to slow down. Stop. Rest." I do when I can but sometimes I get carried away with life and all the exciting things it has to offer and go overboard, usually resulting in being forced to stop via a seizure or five. 

That's the thing with life at the moment you see. It's busy, exciting, fun, enticing, exhausting, energy-sapping and begging to be lived. I forget that at the end of the day this hidden monster inside of me can gain control of everything in a split second. On the other hand why should I let that stop me doing everything that I can to live and enjoy life? Push myself forward and strive for the next goal and achievement no matter how big or small. That's the same for anyone living with chronic illness. Grab a hold of the good days, brace against the bad days. 

With that said I need to get back to sleep ready for a long day of general life chores tomorrow and good old assignment writing.

Oh and on a slightly smug but I don't care note... guess who's got top marks in every single assignment in every subject area of my course so far??? MEEEEEEEE  **smug**

Hard work and determination pays off my friends  xXx 

November Epilepsy Awareness Month

Hello November,
There's many faces to Epilepsy!
xXx

Questions questions questions

"Are you ok?"

"What happened to you?"

"How did you do that?"

These are the typical questions I get asked when I walk into a group of people who have no idea that I have seizures, sporting a rather fetching minor black eye. Or any other injury for that matter.

My tutors at college are aware that I have Epilepsy as are the main people I hang around with, but as for the wider audience in my life, I tend to work on a need to know basis. When I join a new group of society I don't just blurt out that I live with seizures. Instead I only tell the people who I will be spending a large amount of time with because of the likelihood of me having one whilst I'm with them. Fair's fair. Others, I leave to get to know me for me first. It may then come as a shock to them that I can be (dare I say it) a completely "normal" human being on the outside then bam a seizure strikes which they will either witness themselves or be witness to the effects of, and they soon learn a valuable lesson.

This week was the first time I had to walk into a classroom full of unsuspecting people, with a grazed face and freshly banged black eye. First came the looks and slowed hush around the room. I'm totally ok with that as to be honest I am quite likely to do the same thing if I'm honest. It's natural to wonder. Then once I've sat down amongst people come the questions. One person will be brave enough to simply ask "what happened?" or something along those lines. To which I will reply with the honest answer similar to "oh I have Epilepsy and I had a seizure and banged myself on something. It's ok though I'm used to it and this injury doesn't hurt too much now." Usually accompanied with a smile that says "thank you for asking" as believe me, it relieves this invisible tension thats hanging around the room.

Throughout the period of time following, which will last from now on really, I'll often receive questions about living with Epilepsy and I'll forever be totally open about it. It's less pressure on me and the people around me and makes it less awkward.

X

Saturday Night

How are you spending your Saturday night?

Out and about socialising? A few drinks maybe? A cosy night in with loved ones?

Or are you living the ultimate high life like me...

I'm spending mine lying in bed after a day of feeling exhausted trying to make a decision...

Do I take 3000mgs of Keppra (on top of my other meds) per day but suffer constant nausea and vomiting so have to add anti sickness multiple times of day to be able to eat, yet still have seizures OR go back down to my 2500mgs dose of Keppra and not need to take anti sickness but have slightly more seizures??

Yep, THAT is my Saturday night. Thrilling stuff eh??

In other news a friend and her husband made a surprise visit this morning though which was awesome <3 Also in the past few weeks with lots of practice I've learnt the British Sign Language Alphabet. That, along with the Phonetic Alphabet for use with radio's and soon adding Braille and Makaton I'm building my communication skills for people with varying abilities I will meet in the Healthcare world and life :D It's hard work trying to keep it all in my brain but if I just keep working on it again and again I'm hoping these new skills will be here to stay! 

Peace X