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

Fresh Start

So, I haven't been on here for a while. There are many a reason as to why but, to keep it simple, I was taking some downtime whilst trying to sort my life out! 

I come with news. I've started COLLEGE. Yep, little me has gone and signed myself up for a two year course studying Health and Social Care. If you were to ask my parents what they assumed I would be once I grew up I would place a bet on them saying "nurse, or something in healthcare." For as long as I can remember anything medical related I have found an draw towards. So far in life I have followed my other passion which is the arts and have already gained myself an honours degree in Photographic Art. Then along came Epilepsy and completely changed the course of my life. For a while I thought it was for the worse but over the past five years I have grown to understand that despite all the negativity's, having Epilepsy does come with some positives. One being that is has re-ignited and strengthened my passion for all things Health and patient Care. That along with volunteering for St John Ambulance Cymru and all the experience and fire that has rewarded me with, I find myself officially studying towards my future once again. 

I've been on the course for nearly two weeks now, meeting new people, making friends and settling in to find that I love it. The idea of having a purpose, routine and an aim in life, leaves me filled with eagerness and anticipation for the future again. Something I had quietly lost over the past year or so. Epilepsy has very nearly robbed me of my life more than once now and I nearly let that ruin my positive outlook on life. Now, I can happily say that whilst seizures still rudely interrupt my life whenever they feel like it, emotionally I'm in a much stronger place. 

Now lets get practical... of course I'm having to be careful not to wear myself out whilst studying, volunteering and living life. Everyone studying my course have been split into three classes with differing timetables. The college were kind enough to put me on the timetable that means I have a day off between every day I have in. So my class days are Monday, Wednesday and Friday. Perfect. This means I have time to rest, and take my time to catch up on notes etc if I miss anything for any reason. I absolutely cannot fault how my college have treated me in terms of having uncontrolled Epilepsy. The very first day I was greeted and taken to fill out a Care Plan in case of seizure whilst on Campus and shown around the buildings to familiarise myself and meet various people I will likely come across in the event of a seizure or other illness. This is fab as it will help a little with post-ictal confusion and I'm less likely to react to my unfamiliar surroundings and people around me when I'm not quite back "with-it". It's also great that all my tutors are healthcare professionals - could it be any more convenient? 

I'm working on another positive little project at the moment which is becoming more rewarding as the the days go by. I'll ramble on about that some other time though. I hope to get back to blogging regularly again as the benefits and brilliant experiences I have gained from this in the past have been invaluable. All in good time though, I'm living a busy life at the moment and loving it! x 

Calm before the storm

I promise to be back here soon. Life's a little hectic and I managed to fracture my elbow during a seizure whilst out alone! So I'm enjoying some down time with family and friends before I start down a new path in life this September.

I'll also reply to emails received relating to my blog soon too!

x

Recent Happenings

It's been busy over here! At the moment I'm recovering from and allergic reaction to some medicine in amongst this heatwave we're having. It's HOT. Well hot for Britain anyway and I don't do very well seizure wise in heat so I spend most of my time next to a fan trying to keep cool. 

This is just  quick update on some happenings that have been going on...

My little niece Willow turned two years old so my dad and I travelled the 200 miles down to visit them for the day. She had a lovely little party at the local fire station (her dad is a retained fireman) and with lots of her little friends. We all had a great time.

Oo we had a choir concert the other night in which I sang soprano for nearly two hours under bright, hot lights and not once did I fall off the stage! 

 I've been creating little pieces of button art to auction off in aid of Epilepsy Sucks UK. I love little crafty projects like this and as well as keeping me occupied I find it very stress relieving.  So to put it to some good use by using it as a way to raise funds for the charity makes it all the nicer. 

I also had another neurology appointment. In which my consultant watched a recent video of me having a seizure and did that thing (that really frustrates me) where by he watched the video silently whilst furiously writing down things in his notes! Off the back of the video and me giving him the list of seizure I've had since I last saw him he increased my dose of Keppra to the maximum made sure I have the nurses number to contact if I need to and that was pretty much that. I want to know what he saw in the video... he did say he would send me a report of our appointment so I'll see if it says anything in that although I doubt it will. 

I picked up a great little container to keep my various medicines in one place when I'm out and about from Medpac. It's bright orange which is great for if it needs to be grabbed out of another bag etc quickly and holds everything I need when out perfectly! 

The other day was awesome before my lovely medication reaction took hold. I've been dreaming about going to the beach for ages. My friends go quite a lot but I seem to always either be poorly, be recovering from injuries or have appointments planned etc. This time though I was free as a bird and feeling relatively human so off we went! I'd been eyeing up a new body board as well and finally got my hands on one and got to try it out on the waves. It was great! Sun, sea, sand and a great bunch of friends. 

Perfection! 

Young Epilepsy T-shirt

Check out my awesome t-shirt and not so awesome posing...!

I received a lovely package through the post a while ago and it turned out to be a gift bag from the Young Epilepsy Awards night. I was so chuffed to open it up and discover some exciting goodies in there. Folded up inside was this delight of a t-shirt. Now it's finally warm enough (just about) to wear it without a jacket! It'll be awesome to wear it especially whilst conquering mountains etc and raising awareness all along the way.

To grab one for yourself head on over to the Young Epilepsy merchandise web page where you can pick up a t-shirt and anything else you fancy including their new canvas bags. These bags are promoting their campaign Everyone Knows Someone.


Now get out there and seize the day! X