Thursday, 23 April 2015

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

Thursday, 16 April 2015

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. 

Monday, 13 April 2015

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  

Sunday, 5 April 2015

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 

Wednesday, 25 March 2015

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 

Thursday, 19 March 2015

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

Tuesday, 17 March 2015

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