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

A Hospital Birthday

My birthday this year didn't exactly go to plan. This was the delightful view I was staring at as the clock struck midnight and signified me entering my 26th year on Tuesday night/Wednesday morning.

Tuesday lunch time I suffered a seizure in which I banged the back of my head pretty hard along with bruising and grazing my ribs.

Initially had no intentions on gracing the corridors of my local hospital with my presence but my body wasn't having any of that. I simply wasn't recovering at a "normal" rate. My head was banging, body aching and beyond tired but that's all normal. I saw a doctor during that afternoon for a quick check over of my injuries and for him to make a note of the fact I couldn't walk properly - I wasn't very well balanced. He did a quick check over and deemed me fine. We got back to my place and I took a nap but when I woke up again the vomiting started. Never a good sign when you've had a knock to the head. I still will do anything to avoid hospitals so rang NHS direct for advice on wether I needed to see someone again or if I could just stay home and ride it out. Unfortunately they told me to go straight to hospital to be seen. It's fair enough as you can never be too careful with a head injury - I'm just stubborn.

It took a few attempts to get an IV line in which is actually quite a good number for me especially as I was dehydrated. It also took a few different anti-sicknesses to finally stop me vomiting (lovely) I'm not 100% sure what they tried or what the final one was but it sure did burn my veins from the inside! At the time I couldn't care less though as it worked and I was finally able to keep my Epilepsy medication down. 

I'm very glad I had a friend there with me the whole time. She and her mum responded to my alarm and she didn't leave my side from then on! I was found unconscious in the middle of the kitchen floor. I think I was initially after a cup of tea!

Thankfully I didn't have any more big seizures so I was discharged during the morning and slept most of the day in my own bed. I did make it out for a lovely meal with a group of friends for my birthday and they came around to mine for a catch up and some cake after. So all in all despite a really rubbish start I had a surprisingly nice birthday! 

Now I'm just slowly getting over concussion. My head is still bruised along with my ribs but nothing long lasting so I'm ok with that and thankfully my walking is back to normal again. X 

3 days = 3 appointments

Migraines. Asthma. Epilepsy. 

This week has well and truly been taken over by medical appointments.

Monday was an appointment with my general doctor. The reason I booked it is because my migraines have kicked up a gear in frequency again with no obvious reason. My usual medicine for them (Naratriptan) isn't working as effectively as when I first started taking it to ease the pain of a migraine once it has begun. This has a knock on effect as not only does that mean I feel the full force of the migraine but as they also make me physically sick I'm at risk of not keeping my Epilepsy medicines down resulting in more seizures. The doctor I saw is new to the surgery and was really lovely. She suggested I try the medicine Rizatriptan. Not only is this medicine powerful and hopefully good at its job but it's also a dissolvable tablet that you put on your tongue as opposed to one you swallow. Which means I will be able to tolerate it even if I vomit. I'm to see how these go over the next month or so then go back and see her to either get a repeat prescription of them or try something else. She also suggested that I might have to consider using a prophylaxis medicine in the near future if things don't improve. That is something I'll have to think long and hard about as it would mean taking daily medication along with my current regime of medicines which means and increase in side effects etc. 

Tuesday I was called in the surgery to visit the nurse for a review. This is just to look over the medicines I'm on and how my illnesses are currently "behaving". We discussed various matters around Seizures, Migraines and Asthma. All was fine until she asked me to do a peak flow test. This is where they use a tube type thing to measure a persons ability to breathe out air. Very basically the reading reflects how constricted the airways are. Mine was half of the number on the lower end of the "normal" values scale. I've had Asthma for as long as I can remember but have been having a particular trouble with my lungs since an infection over this last Christmas. I was put on steroids for a while to help me gain some half decent breathing back again and I finished them about 2 months ago. Monday afternoon though I was at the scene of a house fire (I'm a drama magnet.. I can't leave the house without some emergency or other happening - all residents where fine thankfully part of the house were destroyed though!) anyway that meant cycling/running to the scene very quickly up hill and then standing in smoke checking everyone was ok. Needless to say my lungs were on fire and I desperately needed my inhaler. Anyway with the peak flow reading as low as the one I gave there was no choice but to put me back on steroids again for the time being. 

Today I was at the hospital for an appointment in Urology. This one is a little embarrassing to write about to be honest but hey it's a part of me so...

Since being in ITU (intensive care unit) last year I have had a problem with my waterworks down below. Doctors are unsure as to wether my problem is due to nerve damage or possibly a side effect of medicine. Long story short whilst in ITU I was obviously catheterised for days and also had pretty severe seizures during the time. A few days after I was back on a regular medical ward I started experiencing horrible pain in my abdomen and had to have the catheter out and replaced a few times due to blockages. Eventually I had a scan of my bladder and swelling was detected. Now, how it was caused is a mystery but we're thinking either wrong insertion or seizing with it in has dislodged it and caused damage. Since then I just simply cannot pee properly! It's like I can't register when I'm too full and need to empty my bladder. I have to make myself go to the toilet and try to pee but for some reason my system isn't emptying anywhere near as much as I'm taking in. Skip forward months and plenty of tests and I'm now at the point where the pain from retaining so much urine is causing huge discomfort and gradual damage to my bladder and kidneys so the only option is to self-catheterise. I had a good long chat with the nurses at the clinic and they carefully explained how the catheters work and what I have to do. I had to give it go at the hospital to make sure I know how to use them properly and empty my bladder before I left. I was holding over a litre of fluid when they scanned me! After my 'practice' session I was successful and when they rescanned me had next to nothing in there thankfully which in turn made me far less bloated and much more comfortable. The catheters are surprisingly discreet so I can carry some around in my bag etc which is good. Plus they are delivered to me door, whoop! 

Just another chapter in the life of Jade X

Post-Seizure Fuel

Check this out for a delicious pile of colour! 

This was my lunch the other day, a post-seizure day. I had a massive craving for cheese and in particular the salty taste of Halloumi. So I popped out to the shop to grab a pack of Halloumi and decided to whip up a salad from ingredients already sitting in my cupboard and fridge. I was going away for a few days so needed to use up some fresh food anyway. 

In the end there was quite a list of foods that made it onto my plate:

• Grilled Halloumi
• Fresh uncooked Spinach
• Cucumber
• Cherry Tomatoes
• Beetroot
• Sprinkling of seeds
• Drizzle of Olive Oil
• Pinch of Salt+Pepper

The result was scrumptious and energising! I've just back got from a long and tiring weekend so I thought I'd repeat it and make it again to eat today to make up for lack of energy. Yum. X 

Seizures + Endocrinology

Urgh the last few days have been rough. A seizure hit at about 6am in the morning on Wednesday. I knew it was coming as unusually for me I was struggling to sleep and constantly waking up feeling sickly and generally "not right". In the end I got fed up of dozing so thought I'd take a cool shower in the hope of feeling a little better. But in the space it took for me to get out of the shower and get dressed before putting my seizure alarm back on. Bam. I was waking up on the bathroom floor with a very sore shoulder. Lucky for me I didn't hit my head this time so that's a plus! My seizure was accompanied by a Migraine for the rest of Wednesday and into Thursday. Today I'm feeling almost back to my normal self though :)

Anyway what I was intending to write about was the problem I seem to have with my blood sugars. I'll try to explain. 

Since I altered my diet to low carb and eating little every 2-3 hours I've seen a little decrease in my seizures which is amazing. This is in comparison with a standard diet of 3 meals a day. Now we're trying to find out why this seems to be an issue.

On various occasions on admittance to hospital for seizures, when my blood sugars have been checked they have come up with low readings. Now was the question "which came first, the seizures of the low blood sugar?" and this is what my doctors are trying to determine. 

When your blood sugars drop too low your body sends out a adrenaline response (usually seen as tremor and shaking) My theory is that, because my seizure threshold is lower due to having Epilepsy my adrenalin response comes in the form of a seizure as well as the usual signs and symptoms. Now it might be that they drop too low or the drop too fast. I'm no doctor though but after discussing this with my Neurologist he seemed to agree that this might be an issue and sent me to see a Endocrinologist. My first appointment with him was a long one. He too listened to my views and after discussing everything to do with my general health, seizures and the effect of changing my diet he agreed that this definitely needs investigating. I left his office feeling confident, listened to and taken seriously.

I received his request for me to be admitted to hospital for a test within two weeks of seeing him. I wrote about it  **Here** . I'm waiting to hear about another test he wants to perform soon as well. 

For now each night before I go to sleep or before significant exercise I am to check my blood sugars to make sure they are at a level of 5.8 or higher. This then gives me a buffer through the night so as my energy is used sleeping the sugars will drop but hopefully not below 4.0. Now this is not really THAT low of a number but it seems to be a bit of a floor for me so as long as I stay above it the less seizures I tend to have. 

I do have to say though that this certainly won't give me any answers in the form of a cure as with most of my seizures my blood sugars are well within the normal limits. I'm ok with that though having less seizures is a pretty good start! 

Well that's me done for a little while as 5am tomorrow morning I'm waking up to go on an adventure with my medic family. It's my first major duty out of our county so we're staying away for the weekend. I can't wait to see what the time brings... hopefully not too many patients and absolutely no seizures please?! X 

Lemon Baked Chicken Wrap

Tuesday morning I woke after a drug induced sleep. Monday afternoon I'd started feeling a horrid Migraine coming on so I quickly took my migraine medicine but sadly to no relief. In fact it's working less often nowadays (makes a note to do something about that) followed in the evening by my Epilepsy medicines. Not a nice cocktail. Anyway I hate the way my medications make me feel sluggish and just generally horrible so I thought I'd whip up a healthy balanced lunch for myself to counteract some of the horrid chemicals floating around my bloodstream! :)

  

This is what I decided to make. A fresh lemon baked chicken and salad wrap. I thought I'd get a little creative and photograph the recipe of this delicious yet incredibly simple meal!

  

What did I use?

• Chicken breast fillet
• 1 Avocado
• Cherry Tomato's
• Quarter of a cucumber sliced 
• Fresh pea shoots
• One wrap - you can get them in all sorts of flavours, mine was just a plain white one as it was the only ones they had in my local shop! 

Firstly pre-heat the oven at about 180 Degrees C. 

Next take the chicken breast and keeping it whole 

place it onto a square of tin foil. Add any seasoning or herbs you fancy. I just popped on some of the usual salt and pepper then dribbled some lemon juice over it. 

Seal the contents in the foil by folding over the chicken and folding the sides until you have created a sort of packet. This keeps the moisture inside so the chicken doesn't dry out during baking. 

Place the packet(s) onto an oven tray and into the pre-heated oven for approximately 30 mins. Timings will differ depending on the side of the breast (oo err!) 

Whilst you are waiting for the chicken to cook why not use the time to prepare the rest of the fillings. I chose a fairly simple yet nutritious and delicious salad including cucumber, cheery tomatoes, pea shoots and my absolute fave avocado!

Chop your ingredients into manageable sized pieces that can be contained within a wrap without breaking free... 

So, the timer has beeped and now is the time to check your chicken. Always make sure the chicken is cooked the entire way through and piping hot. Nobody wants a bout of food poisoning now do they?! There should be no blood in the juices and the meat should be white through and through. 

Slice the cooked chicken and pop it onto a wrap either straight out of the oven or after it's cooled with you're other ingredients and you're done! 

One delicious well balanced meal full of protein and nutrients. Prefect. 

X

Fundraising - Pounds for Pillows

My fundraising page

My sister and I have decided to take part in a little fundraising by hiking over the mountain range seen in the distance of the above photograph. This is the Llantysilio mountain range that juts out of the earth between where I live and where my parents and sister live. It becomes a metaphor as a barrier to places you want to get to in life. Always a challenge, made more difficult by Epilepsy. Together we are hoping to conquer it in one day by walking the entire length and hopefully raise some pennies along the way. These pennies will amount to pounds which can be donated to my chosen charity Epilepsy Sucks UK and transformed into life-saving anti suffocation pillows. These pillows provide a safe nights sleep for people like myself who suffer with nocturnal Epileptic seizures. If you follow my blog you'll know that it won't be as easy for us as it might be for others. The very ability to walk this journey means the world to me every day as in the past seizures had taken the idea of walking "normally" away. Now I'm going to take advantage of my being able to walk and never take it for granted!

You can find out more about the charity and the wonderful work they do here!

If you're interested in the challenge that my sister and I are undertaking then feel free to visit my fundraising page here!

Much love X

Run down

Well spring has well and truly sprung here in Wales which I'm sure plenty of people are thankful for! 

Life has been very busy recently mainly with St John Ambulance duties, catching up with people and general life happenings. I'm also in the middle of making a big decision that will change the course of my life which is causing some stress but I'm keeping that hush hush for now! 

I've been fighting off a strange chesty/throat type cold. I wake up in the mornings after waking up multiple times during the night with no voice and by the time I spoken to people throughout the day I gain my voice back but loose it again but the evening. Talking leads to coughing which leads to streaming eyes! This has been going on for a few days but it's only today that I've started to actually feel poorly from it. The usual tiredness, headache that won't leave and achy muscles. 

I took a light stroll along the canal earlier to take in some fresh air and stretch my aching legs a bit after a day on duty. I feel better for it and it's always nice to soak up a little bit of sunshine!

My "to-do" list only consists of laundry tomorrow so hopefully a full days rest will do me some good and let me recuperate before yet another busy weekend. I can't let myself get too run down or of course the inevitable seizures will start to creep in take hold. 

So it's an early night for me! X

Today is a good day.

Do you ever have those days where everything just goes right. Everything seems to make sense and fits perfectly into place with everything else?

Today was one of those days.

Days like this don't happen often. The sun was shining, I got through my list of chores with ease, completed some tasks I'd meaning to get to for a while, had a good honest chat with my dad, caught up with my sister, had an impromptu but confidence boosting meeting and finished the day with a much needed kickboxing session. 

Today I had energy, I felt refreshed and most importantly I did not experience a single seizure. 

Today I felt like I could conquer the world.

Perfect. 

Hospital 72hour Fasting + Seizures

Friday evening I was discharged from yet another stay in hospital. Thankfully this time it was a planned admission under the care of my Endocrinologist. I will write a post as to why I have been reffered to this doctor shortly, but it's basically to do with my blood sugar levels possibly being a factor in triggering some of my seizures.  

This stay was only 4 days so not to bad. It was so they could carry out some tests whilst I was fasting for 72 hours or three long whole days and nights!! This was no easy task when I was perfectly well at the beginning of it and used to eating every 2-3 hours. The intention was to record my blood sugar levels every four hours during the whole fasting session to see what they would do and how my body would cope. As I was well during this admission I thought I would capture a few snapshots on my phone to create a little diary as to what it was like and what I got up to during the time. 

So it began on Tuesday morning. I was told to ring the ward I would be staying on and see if there were any beds available for me to be admitted. Now here in the UK the NHS is under extreme pressure, more than ever before and is in the news daily due to lack of beds and waiting times etc so I was not expecting a bed to be available so soon after my initial appointment with my Endocrinologist three weeks before. I telephoned the ward in the morning to be told that there was 99% chance of no beds available. Lunch time however I was called by the ward sister and informed that they were hoping to discharge one of the patients depending on blood results so don't go anywhere far incase I do get called in. Low and behold later on that afternoon I was called again and asked to be at the hospital within the hour to take the bed. 

The fast began as soon as I arrived. For the next 72hours I was to only consume water, black tea and black coffee. I'm not a huge fan of black tea and coffee so essentially all I could drink was the water. (I did try a cup of black coffee after a day one but it made me feel sick!) 

In order to undertake the fast I had to have a cannula inserted. I'm pretty notorious for not having the best veins ever. They are weak from so many past insertions and tend to shy away despite being fully hydrated. It was essential to have a cannula fitted not only because of possible hypoglycaemic episodes where they need to get sugar in me fast but also due to the chance of me needing intravenous rescue medicine in the event of seizures. I couldn't believe my eyes when the doctor who clerked me in managed to insert a cannula first time! It wasn't to last...  

Within hours the cannula site became red, sore and started to swell. I asked the nurse to look at it as it was becoming painful to move my hand. She tried to flush it with saline but unsurprisingly it was blocked. She then tried to locate a vein to insert another needle. After attempting to get one in she failed though. 5am the next morning I was woken up by another doctor who had come to attempt to insert on again. 5 attempts later, with blood all over my sheets and him having being showered in saline I still had no cannula fitted. They then called another doctor to come and try who used to be a phlebotomist. Thankfully on attempt 9 (which believe is or not is still a a low number for me!) she managed to successfully cannulate me! It couldn't be inserted fully in so had to be taped, plastered and bandaged to me so I didn't accidentally knock it out. PHEW! 

So I had a lot of time to do a whole lot of nothing. I spread my time out by listening to music, reading and watching downloaded tv programs. This got boring very quickly though.  The worst thing however was when everyone else on the ward was eating their breakfast, lunch and dinner! Especially when the food trolley would come onto the ward and fill the air with the smell of food. I know hospital food doesn't exactly have the best reputation but when you're really hungry anything sets your stomach going.

During lunch times I would go and have a shower to avoid the temptation for a while. Then during dinner times I would escape the ward and wander around the hospital corridors or sit in the day room catching some sun. I was very lucky to have lots of visitors during my stay :) ranging from friends and family to doctors and nurses who I know personally that work at the hospital. The paramedics I spend time with out on the ambulances as an observer with even popped in a couple for times. It must have been strange for the other patients to see me with people in all their uniforms just sitting hugging and chatting with them. It very nice to have friends from various areas of the healthcare profession when you spend so much time in hospital!

It was inevitable really that at some point seizures would hit. They did so at 4am on my third night there. To be honest I thought it would be sooner. I woke up the next morning to find myself with an oxygen mask, the sides up on my bed and feeling like I'd been hit by a train! I'm told I had gotten out of bed just before 4am visited the toilet then on my way back had gone over to a nurse and asked her if I could have one of my migraine tablets. By the time she had gotten to my medicine cabinet she had found me seizing on my bed. I was left so utterly exhausted for most of the next day and remember none of it.

By the time came for me to be discharged I was allowed to eat. When the nurses asked me what I would like they told just say anything and we'll see what we can do as it was dinner time on the ward anyway. All I fancied though was cold, buttered toast. Yep. Hospital toast is usually cheap white bread, cold, chewy and dosed in butter. Which just so happens to be my favourite and I rarely eat bread at home so I was taking full advantage!! At first they said that there was no bread to which I was genuinely gutted. But of course they were joking and brought my a pile of toast with a sugary hot chocolate and I can tell you it was the best meal ever! 

And that was that. My endocrinologist came to visit me everyday and just before I was discharged. He told me wants me back in for another test in about a month but thankfully this will only be a day case. I'm interested to find out what he thinks and what the results will be. x  

Young Epilepsy Champions Awards 2015

Well I've finally got around to posting this in amongst the business of life, visiting family, St John duties and seizures of course! 

During the evening on March 26th 2015 London's City Hall played host to the Young Epilepsy Champions Awards. I was delighted to receive an invite to this years ceremony due to this very blog. Before I knew it I was hopping on a train down to London ready for an extraordinary night.

This years event was an amazingly inspirational night where some of Britain's most inspiring individuals where recognised for their efforts in the fight to raise much needed awareness of Epilepsy.

Guests amongst many others included athlete Dai Greene and footballer Leon Legge both of whom have suffered with seizures themselves and despite battling Epilepsy have become incredibly successful. Always great to know!

 Just look at that view!

It was a brilliant night which I thoroughly enjoyed and I want to thank Young Epilepsy and everyone involved for their continued support towards the Epilepsy community. It's events like this that bring us together in our fight and allow us to truly know we're not alone. 

*Here* are this years awards winners in the various categories. Well done to you all you truly deserve it! 

I was lucky enough to bump into one of the most inspirational people in my life. The founder of the charity Epilepsy Sucks UK  Sallieanne Gould. I first met Sallieanne at the awards in 2013 where she swept the stage gaining multiple awards for her work for Epilepsy Sucks UK and Epilepsy. Long before this though I had gotten to know her online in a support group ran buy the charity on Facebook. Through them I was able to gain an anti-suffocation pillow which I can safely says has saved my life on multiple occasions!

I attended the awards two years ago due to having taken part in an ongoing campaign named "Everyone knows Someone" ran by Young Epilepsy and fashion label River Island (here's a link to their website if you want to find out more!).

This isn't a particularly long post for such a significant event due to the fact I'm currently packing for yet another hospital stay for at least five days so I thought I'd get something down before I go in. In fact I might update it on my return!

See you on the other side x 

Purple Day Celebrity Auction

As you may or may not be aware tomorrow (March 26th) is world Purple Day. This fabulous day is aimed at raising much needed awareness of Epilepsy. People across the world will be donning purple clothes, baking purple cakes, dying their hair purple and much MUCH more all in aid of #PurpleDay! 

The lovely people at STYLIGHT have been in contact with me to let you know of a way you can get involved!

Purple Day Celebrity Fashion Auction

This is hot off the press info about the event...

"STYLIGHT, the leading European fashion discovery site has today launched its inaugural Purple Day Auction enabling fashion-lovers to pick up some true style gems in the name of charity.

The e-commerce site invited over 50 of the most fashion-forward international stylists, fashion bloggers and tastemakers to open their wardrobes and donate a precious fashion piece in support of global epilepsy charities, namely Epilepsy Action in the UK

Amongst many of the pre-loved, new and unworn designer items are a new mini Moschino leather bucket bag from the CEO of Luisaviaroma, as well as a Dries van Noten dress from Sarah Bailey, Editor of Red Magazine and other amazing finds such as Chloe ballet flats, a Miu Miu clutch and a showstopping Mary Katrantzou jumper.

The auction will begin on Thursday, March 26 at 9am and will end Thursday, April 2 at 9am."

Take a peek at the link above and discover what you can bid for. There are some amazing items and better than that you'll be raising awareness for Epilepsy in the process.

Whatever you're up to tomorrow make it a good one and have an amazing day. I'm hopping on a train to London with my little sister to attend an awards ceremony held by Young Epilepsy, I'll tell you all about it soon!

X 

Instagram

I have recently joined the world of Instagram!

I love it simply because it encourages me to take more photo's which in turn makes me happy :) and I can keep track of the little things that matter even when my terrible memory can't!

I'm jade.dolby in anyone wants to follow.

X

My guardian angel (seizure alarm!)

So it's been a while! I can't believe how fast time flies... I've got a couple of hours before choir tonight so I thought I'd catch up on life a little by posting about my seizure monitor alarm system at home. 

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 watch design that is very lightweight and fully adjustable to fit 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 little telephone 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 which alerts anyone that might also be in the property at that 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 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. In my case that is my friend who only lives a street over, then if she doesnt pick up the phone my landlady is next on the list followed by another friend who lives a bit farther away. 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 of 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 I don't do this anymore as my Complex Focal Seizures have taken a back seat for the time being. It does mean however that I absolutely have to remember to take the watch off before I leave the house! 

It's great as I can wear it almost all of the time so wether 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. 

X 

Lurking

I am still here just lurking in the shadows at the moment. 

There have been numerous time I have sat down with my laptop trying to persuade myself to write about what happened in late August of last year, but it just doesn't happen. It's as if thinking about "it" sends me into a web of thoughts I'd rather not be tangled in. I can't believe how long it has been since and for everyday that gets added to the past I am very grateful for! My seizures still rage against my tireless will to escape them but thankfully with less force for the most part. I can count weeks in between some of them now. 

I'm still getting used to trying to live independently again. I feel loved, find myself smiling everyday and alive. Is there anything else I should be wishing for? 

xxx

Back Home

I'm back in my own home after being away for over four months. I'm still getting used to everything so I will update properly once I'm back up and running fully!

Take care x