Back to blogging soon!

I promise to be back blogging properly soon. I'm still in recovery from a close flirt with death. It's pretty hectic at the minute with various things needing to be sorted out in terms of the future. I'm also in and out of hospital (as an outpatient thankfully) due to complications from being on life support. Hopefully these won't be long lasting but only time will tell at the moment. 

I'm currently living with some friends so I can be kept a close eye on at all times. I'm waiting for a some alarm systems to be installed in my own apartment so I can live relatively independently again whilst being monitored. One will be a fall alarm that I will wear all the time I'm at home. The basic idea is that if I go into a seizure and fall to the ground the alarm will be set off and my nominated people will be informed that there may be a problem and seek appropriate help. Another is a seizure alarm for my bed which will simply alarm when I go into a seizure during sleep and seek help from others on my behalf. 

Great news is I've been doing fairly well in terms of seizures which feels amazing!

Once things are more settled again and my head feel bit more straight then I will be far more prepared to settle down and write about this crazy adventure I'm on...

Speak soon x

I.C.U

Apologies for my absence.

I don't mean to neglect my blog but I unfortunately have just returned from hospital after a time in the Intensive Care Unit. A very scary time for all involved that will take a while to recover from.

Stay well
xxx

Something on my mind.

"Do not question a person when they don't turn up to a social event, 

there might be a reason as to why that they themselves are not ready to accept." 

Hospital Bag

Over the past four years I have learnt to always be prepared for a hospital admission be it over night or month long. I always keep a bag packed "just in case" I find myself in hospital with absolutely no notice or indeed with notice. Family and friends know where this bag is and can collect it from home for me if needs be.

Inside my bag are the everyday essentials that make a hospital stay a little more bearable.

Wash Kit:

• Towel
• Shampoo + Conditioner
• Body Wash
• Feminine Hygiene products (just in case!)
• Razor (nothing worse then being stuck in bed for days with hairy legs eh ladies?)
• Toothbrush + Toothpaste
• Face/body wet wipes (for a quick freshen up) 
• Deodorant 
• Perfume (believe it or not I always keep a little bottle with me, smelling better makes me feel better!)

Two pairs of pyjamas, extra underwear, a pair of slippers and of course a nice snuggly dressing gown. With these in tow as essentials, a hospital stay is made that little bit easier to cope with. Then just ask your visitors to supplement your stay with more exciting things like books, conversation or a device that plays your favourite DVDs! x 

A little bit of luck.

It's been a rough couple of weeks and a couple of days ago I received a letter through the post. Opening it I found this...

On a recent holiday to France to visit my Auntie and Uncle we were out walking in the local fields and found a four leaf clover! I was delighted to have received it all pressed and dried to preserve it forever. It was an incredibly fragile operation but I managed to frame it so it will keep dust free and safe. Now it's sitting looking lovely on a shelf in my apartment. 

I LOVE IT <3

Next time I will listen.

I've had to be absent again and you'll never guess why...

It was long scary story this time.

Sadly this all occurred when I was supposed to be spending some much anticipated time with my sister and niece both of whom I hadn't seen in months. I finally after only recently being in hospital previous to this admission took the 200 mile journey to visit them. I was there for a total of 3 days before the first big seizure hit. It was a Tonic-Clonic that sent me falling backwards leaving me with a nasty bang to the back of my head. This has happened plenty of times before but this time I didn't recover quite at my normal rate. My sisters partner was at work and on-call as a firefighter so given that my niece has only just turned one I didn't want to leave my sister with the responsibility of me as well. I phoned the NHS helpline for some quick advice as to whether to get checked out or not and without hesitation they told me they would send an ambulance. Now, looking back I should have agreed to this but instead I told them I would make my way to the minor injuries unit to be checked over to be on the safe side instead of troubling an ambulance. The three of us made our way to the tiny hospital which luckily was just down the road. Once there I was immediately checked over and had my observations taken which unfortunately were not brilliant so low and behold they called an ambulance to transport me to the much larger county hospital. I am so lucky they did as en route to the hospital I drifted off to sleep and fell into my first of many clusters of seizures. I was totally unaware of this until being woken up and told what was happening but luckily I was able to come out of the cluster without medical intervention but from past experience (this cycle has happened 3 times before in the four years I've lived with Epilepsy) this wouldn't be the case for long. After a long day and some complications that I will have to omit due to negativity on the hospitals part I was discharged from hospital number 2. BIG MISTAKE. 

Unfortunately and for the life of me I will never be able to understand why, because I was in a hospital in which I am not a regular patient, my hospital records couldn't be accessed and despite putting up a desperate fight they failed to understand that the clustering of seizures every time I slept was NOT normal for me. 

The next morning after seizing through the night we went to the local GP surgery to ask for an emergency prescription for me to get some more medicine as I was fast running out of my normal rescue medicine Clobazam in an attempt to stop the cycle myself. Because this is a controlled drug I was taken in to see the GP in person which turned out to be a God send. My sister and I explained what had been happening and despite the fact that I was now incredibly exhausted from seizing I was refusing to go to sleep as I was afraid of the approaching seizures. Thankfully my sister has also taken some video recordings of me seizing in the previous hospital the day before and showed the doctor. She was shocked and explained that I needed to go to the nearest neurology specialist hospital. So this is exactly what we did. 

The doctor had rang ahead to say we would be coming and so I thankfully got to skip Accident and Emergency and go straight through to the Emergency Care Unit. It was incredibly busy and as usual nowadays for the poor NHS severely understaffed. I had tests done though which showed abnormalities including weakness down my right side and a distinct lack of coordination in my upper limbs. Not good. They set me up in a cubicle hooked up to a monitor and finally I felt safe enough to sleep. Exhausted it didn't take long and as soon as I was asleep the cluster started up again. They tried me on my regular rescue medicine again to see if it would make a difference but unfortunately it wasn't to be. I was transferred onto a ward and hooked up to my own SATS monitor that would alarm every time my oxygen levels dropped to low and alert the staff. The next few nights the cycle continued getting worse as time went on with my seizures coming more frequently and for longer and by now not stopping without medical help. I was given rectal Diazepam which thankfully aborted the cluster temporarily for the first couple of nights which meant I was getting a decent sleep after the seizures had stopped. I had to have the Diazepam for a few nights and eventually the cycle was broken and I got almost a whole nights sleep without any seizures. Just two minor ones but given I was exhausted, boiling hot and stressed.. that's nothing short of a miracle. 

It is very hard to get my head around the fact I could fall asleep with just a small SATS monitor on my wrist and finger and wake up connected to many monitors and oxygen masks pushing oxygen into my body to make up for the lows during seizures. There would be pillows and blankets that had been placed next to me in the night while I was seizing to stop me hurting myself on the metal bed rails. Each morning the overnight nurse would come along and explain what had happened during the night and show me my seizures chart full of scribbled doctors writing noting seizure after seizure and yet I would be totally unaware. Exhausted, sore and miserable of course but to see the number physically written on paper is strange. I can't thank the staff particularly the nurses enough for their kindness, understanding and support. My sister for putting up a good fight for me and my mum for making the long journey to visit me and bring me lovely new pyjamas for my stay. Plus I had a cracking view over Oxford from my bed :) 

Five days after admission I was discharged with strict doctors orders to keep cool, not travel too far, not do anything over strenuous etc. My mum came to collect me and we visited my sister and niece to say goodbye before we travelled back to her house. I stayed the night there to take a break from travelling then my dad came to collect me to take me the rest for the way home. 

Phew, long story over for now! Stay well xxx

Today I feel lucky and I thank you.

Today I feel good. My head doesn't hurt, I'm not struggling to stay awake and my brain is allowing me to walk again. Today I feel lucky. The sun is streaming through the windows. I'm lying on my bed munching grapes and sipping detox tea whilst making paper tissue pom poms for one of my closest friends wedding that is fast approaching.  

These past couple of months have been a roller coaster journey of extreme highs and the lowest of lows but things seem to be levelling out for the moment, something I am very pleased about. There have been wonderful trips to visit life long friends and dreadful confidence shredding trips to the hospital. Cooking and sharing food with lovely friends in my great new apartment and struggling to keep even the smallest morsel of food in my body. Sitting in the park in the glorious sunshine listening to world music drifting through the air from the festival in town and listening to music to try and distract myself from the bleeping alarms of medical monitors.

In a couple of days I will be travelling to visit my sister and niece who turned one a few weeks ago. I was supposed to be there as I type right now but unfortunately my seizures decided they would rather have me in hospital than enjoying time being an Auntie. It's ok though, I'm rested up and ready to play with the little toddler in the summer sunshine as of Sunday. I can't wait to hear her newly found voice in person and brush off her tiny limbs when she stumbles overjoyed with her fresh ability to run around. 

Today I want to thank every single person that I am lucky enough to have in my life. I hope someday I can repay all your life-lengthening kindnesses. To play a part in your life like you have mine. You may not know it but you're what keeps me going, what brings that next smile to my face despite everything telling me not to. 

Keep being you, beautiful people x 

Be back soon

Another spell in hospital and will literally have to get back up on my feet again soon.

Stay well xxx

SAMi Seizure Alert Monitor

I was recently contacted regarding a new seizure monitor that I believe may be of great help to the many people out there who suffer from seizures. This monitor runs through the extremely popular iPhone. 

The press release for this monitor can be found here please do have a read.

Created out of personal need for their son the small business is located in Boulder Colorado. USA.


They're running a charitable Indiegogo campaign now, the campaign website has videos that show the product in use and an endorsement by a Denver neurologist.

It makes for interesting listening so please do look into this if you think you or anyone you know may be  interested. 

Nothing really changes

I'm still without internet so I'm having to neglect my blog :(

Quick update though..

More seizures
More injuries
More hospital.

Nothing really changes eh?

Adventuring when I can though :) I'll settle down one day when I have proper and constant internet and jot it all down!

Stay safe and seizure-free all x

Just keep singing!

So I may have disappeared from social media sites a little including here as I still don't have my own internet at home... But.. as my seizures continue so to does life!

The past couple of weekends the Glyndwr University Choir of which I am a member have put on a gala concert along with the Cantiones Choir and a brilliant orchestra the Oswestry Sinfonia and it has been an amazing success. It's such an lovely feeling being able to stand in front of a packed church and sing out some wonderful songs. 

This is a photograph my friend took last night during the last of our performances singing Mozart's Requiem and Pergolesi's Magnificat. 

I have to say I am very lucky to have been a part of it and think we should all be proud of our performance. Whether my seizures like it or not I hope to continue singing with the choir for a long time to come!

No internet

I might be a little slack on the blogging in the near future as I have just moved into a new apartment and life is super busy so I am yet to sort out any sort of internet!

Catch up soon though! x

NHS Choices Epilepsy Clinic

I received an email today with some exciting content that I have been asked to share with you all as it really would be very helpful to people with Epilepsy in their lives in any which way!

talkhealth –  work in partnership with NHS Choices to share information, run forums and a monthly Online clinic service. Our clinics are online Q&A sessions with NHS experts answering questions on a particular health topic each month – to mark National Epilepsy Week this month’s focus is Epilepsy. The clinic are completely free to join – people must make an account on talkhealth to post but this is free, quick and easy – and all of the experts volunteer their time for free.

The Clinic opens today and members will be able to post questions with the experts replying until next Friday (23^rd May), we will also be doing a twitter chat 12-1BST on Wednesday around Epilepsy.

Although the clinics are only open for questions for a week the content will be available to view both on the NHS Choices website and on talkhealth for a minimum of 12 months ensuring the enduring value of the advice given – and increasing the need to get as many good questions posted as possible in the time that the experts are available to answer!

Here's is a Link to the Clinic for anyone that might want to get involved in anyway. Ask a question or simply take a look through others that have already been posted as you never know what information you might find extremely helpful! 

They are also available to follow on Twitter @talkhealth 

Happy Friday all x 

Neuro Appointment May'14

It didn't exactly go to plan.

It's been nearly four years since I had my first known epileptic seizure and I'm still non the wiser as to why I started having them. I've gotten used to this fact though, despite the fact they carry out test after test, scan after scan in an attempt to find the answer, it may never arrive. Although it would be good to know why, I'm ok with not ever having an answer. What I'm not ok with, is being told that my seizures might never be controlled. My neurologist and I are not giving up hope though, that's for sure. He is a VERY honest doctor, something that I have the utmost respect for, I think it is one of the most important qualities anyone in the medical profession can have. During my appointment he told me that this may well be the case, I may never gain full control of my seizures. 

He wants to start me on another medication. What this new drug will be is not known yet, he wants to read through my notes thoroughly before deciding which one would suit me and my seizure frequency and type best. I have had near death experiences when it comes to medications side effects though and so both he and I are extremely wary of the consequences that may occur. In theory I would be better placed to start taking it in a controlled medical setting in order to monitor my reactions. A bed will try to be found for me however the pressure on the NHS is extreme and the likelihood of finding a hospital bed for this to happen within the next few months is small.

For now I am to increase the Levetiracetam (Keppra) again and keep a close diary on the effect it may of may not have on seizure frequency.

I will be seen again in 3 months if not before in an emergency. Onwards and upwards. 

Appointment and France

So I have an appointment with my neurologist tomorrow for the first time since I was discharged from a month long stay in the neuro specialist hospital a couple of months ago. I'm strangely nervous but feeling prepared with a barrage of questions ready for him to hopefully try to answer. I might get some test results back to,  as when I was in hospital they sent my blood for antibody testing to find if there might be a cause for my Epilepsy hidden away in them. 

That's tomorrow, Saturday I'm jetting off to the South of France to stay with my aunty and uncle who moved over there from the UK a few years ago :) I'm flying out with one set of my parents and staying for the week so I'm very excited for that! 

Hopefully not to many seizures will rear their ugly head and try to stamp out any enjoyment...

See you in a week or so! x 

The day I could have died.

The sun is shining today and as I sit looking through my photographs of recent times with friends with the cat curled up next to me, I can't help but think about the fact things could have been so very different now. 

What I am about to type is made up of what my family have told me and the tiny fragments I remember of the few days myself. It's the story of the day I could have died January the 21st 2014. I know every seizure could kill me but this time it was the very thing that was trying to save me that backfired.

Despite waking up from a longer sleep than usual slightly later in the morning my day started off like most others. I wandered down stairs and put the kettle on to make a cup of tea. My dad returned home from taking a couple of clients out for driving lessons. We were sitting at the kitchen table with our drinks chatting away when my vision started to roll. I can’t quite explain how this looked to me… maybe a little like an old tv used to scroll from top to bottom of the screen continuously. It was so fast and overwhelmed my entire vision. I turned to my dad and asked him if my eyes were moving at all when his answer came as a “no” I went onto explain what was happening. He told me to go and lie on the sofa with my eyes closed to see if it passed. At first this actually worked in that if I lay with my eyes closed my world was still again but as soon as I opened them again the rolling vision was worse than ever. By now something was obviously wrong as my balance was beginning to go as well and even trying to sit up was near impossible. My dad rang up my doctors surgery to see if they had any emergency appointments, there weren't.

In the mean time my step-mum returned home apparently I was blabbing away all sorts of rubbish whilst trying to sip a drink to try and feel a little better. As long as I kept my eyes closed as far as I knew I felt alright despite now knowing I was acting very strange. Things soon changed though and even with my eyes closed my whole world started rolling and swaying. Despite lying down and trying to focus I soon started feeling very sick and before long out came the buckets and towels that I swiftly filled time and time again.. My parents tried ringing the doctors surgery again and ask if a doctor can come out and see me but after them explaining what was happening they were told that the surgery were calling an ambulance to come to the house.

We live in the middle of the countryside miles way from anything so a first responder is sent out ahead of the ambulance as they can travel faster. They arrive within minutes and place me on oxygen whilst we wait for the ambulance. My general doctor also comes around to the house to witness what is going on. Apparently one of the first things he said was "well there's no waiting for you for your referral young lady" (I had already been referred to a new Epilepsy specialist by my previous neurologist) I had been to see my general doctor the week before to ask for it to be sped up, I guess he got a shock when he saw why..

In the ambulance I’m drifting too far into unconsciousness so they attempt to wake me time and time again. My heart isn’t beating properly so they repeat and ECG to check. My hands are blue and freezing cold. I'm sick a few times more during the journey whilst unconscious. We arrive and despite the constant news reports of ambulances having to queue outside of accident and emergency departments at hospital I am taken straight in. Once I'm in the hospital they struggle to find access to my veins to give me fluids, in fact one of the junior doctors tells my family that I'm the first patient he has not been able to cannulate.  Eventually though and leaving me looking like a pin cushion they are able to get a cannula in.  Whilst waiting for the my blood results to come back I have some more seizures. Thankfully later that evening I am stabilised and conscious enough to talk a little although still very poorly and extremely tired. I couldn't open my eyes due to the intense rolling vision that was still occurring and a incredibly painful headache that left my barely able to tolerate the harsh white hospital lighting. I'm stable though, brought back from a serious case of deaths door. I have no idea what they pumped into me that day but I'm so thankful that it worked.

It turns out my latest anti-epileptic medicine had been gradually building up in my system until it reached the point of toxicity and poisoned my body sending my system into shut down.

This day was to lead to another four weeks recovering in hospital and having to be transferred to a neuro-specialist hospital for treatment. I was left with terrible vision, vomiting for days and unable to walk unaided. My physical recovery took a long time which I will write about soon. Mentally though, I still have along way to go.

It's a sobering thought but instead of dwelling on it I realise that I am very very lucky to be here. It's simple, if my dad followed by my step-mum hadn't of come home when they did things could have been VERY different.

Surf's up!

Today a few friends and I took a trip over to the coast on what was a decidedly grey and rainy day to take a dip in the sea. 

I know, I know.. a little crazy given it's April and here in Britain we don't exactly have warm sea waters even at the best of times let alone early in the year.

It was so, so worth it!! We all had a wonderful time with a spot of surfing, something that I haven't done in a long while, and bodyboarding an old favourite. The waves were extremely choppy and I have to admit sometimes I felt a little out of my depth both in that it was pretty rough seas and literally couldn't touch the floor being bashed by waves! 

Afterwards having eventually slithered our way out of overly tight wetsuits and covered in sand, we headed over to the local little town Abersoch and found a bar to sit down and devour a hot chocolate (with marshmallows, whipped cream and all!) 

It was a fab day and I really can't wait until next time but for now it's fleecy pyjama's and decaf coffee this evening before a nice long sleep in bed. I need to catch up on my energy or those nasty seizures will catch up with my brain! 

Nocturnal Seizure

Nocturnal seizures tend to give me the creeps the most.

The other morning I woke up with a sore face and bruised cheekbone. I'd had a seizure at some point during the night which had lead to me falling out of bed head first bumping and grazing my face around my eye. So for the past few days I've been sporting a fetching bright red carpet burn on my face for all to see. I should count myself lucky though as I hit it right in the same place where I fractured my cheekbone last year and could have easily re-fractured it. Scary thought as I distinctly remember the pain from that for weeks on end. 

I often wonder how many seizures I may be having during the night that I'm completely unaware of. For the most part I'm well aware that something has happened whilst I've been sleeping as there are clues like aching muscles and bitten tongue etc. 

Onwards and upwards though, I'm seeing my neurologist in less than two weeks so we will see what he has to say.

London with the ladies

I promise I'm not trying to be slack when it comes to keeping up with my blogging it's just life is going everywhere at the moment and it's hard to keep up! Most nights I think, right I'll write a little something up for my blog, and simply end up falling asleep. Perhaps I should try not lying in bed typing... it's just so cosy! 

Lately a lot has been happening and gradually I will get it all down. One notable event was my little weekend trip to London to catch-up with some beloved friends. These beautiful ladies are the doctors I used to live with when I was down in Cardiff having one of the best times of my life. I love each and every one of them and miss them dearly when we're apart. We keep up with each other over group conversation on whatsapp etc but it just isn't the same as wondering into one of their rooms in my PJ's wondering if they want a cup of tea and end up not leaving for hours... 

So every now and then when they can all get the time off work we meet up somewhere and have a good catch up and go on a little adventure. This time we all headed to London to celebrate Amrit's birthday. Whilst we were there we went to the amazing O2 Arena to see the absolutely fabulous Miranda Hart one of our favourite comedians. It used to be "one of ours things" to sit and watch an episode of her sitcom Miranda together after a longs days studying/work. It was SO SO good!! We also (as usual) ate a huge amount of food and some lovely little places including The Breakfast Club in Spitalfields and a cute little cafe called Bea's of Bloomsbury where we devoured what we could possibly fit in of a delicious afternoon tea. Yum! 

Before we all headed back to our respective homes we also explored Camden markets and lock on what happened to be one of the sunniest days of the year so far :) Perfect. I absolutely cannot wait until next time we meet. x

A little moment

Would anyone mind if I took a little moment to sound cheesy?

In the background I'm currently writing up a post that has taken a lot of emotion to edge towards completion and it's made me think long and hard about life. So I just wanted to say...

To my wonderful followers, readers, commenters. Each and every one of you are lovely, fabulous amazing people. You are the reason I write this blog, jot down random thoughts and feelings on life in the hope that someone can relate.

Yes I might leave little gaps here and there were life has got on top of me or I'm off on a long adventure but sure enough I come back and write down general ups and downs. It's my release and to hear that others are witnessing this fight against Epilepsy and seizures feels incredible. Your comments and steady rise of page views mean the absolute world. Together we unite and combine to form a positivity that blasts any misfortune out of the water!

Keep smiling you lovely lot and see you around the next corner, over the next mountain and on the next adventure xxx

Happy Purple Day!

HAPPY PURPLE DAY!!!

In the world of Epilepsy, today is a very special day. March 26th is known as Purple day the international day for Epilepsy awareness. People across the world are donning their purple clothes and doing something special in order to raise awareness and money for the condition!

This year there is of course the "selfie" trend well and truly in action. Charities have adopted the trend to help the effort of raising vital funds to aid their cause. Thankfully there are good few charities working away supporting Epilepsy but today I have chosen one that is particularly close to my heart. Epilepsy Sucks UK are a wonderful small charity that really do work incredibly hard to raise funds to provide children and adults alike who suffer with nocturnal seizure a free anti-suffocation pillow. Not only that (as if that wasn't enough!!) they also provide constant support through a Facebook page (here's a link) to thousands of people all hours of the day. I can safely say that without my pillow I may not be here today and without there support my strength would be dwindling! Below is my effort to help them raise a few more pennies for the pillow pot :)

So if you see someone or something purple today give Epilepsy a thought and wish for a cure please :) Have a lovely day my fabulous purple people x 

A little change

My friends and I decided I was in need of a change.

So off we went to get my hair cut back into a neat little pixie crop and then we went ahead and dyed it blonde! I haven't been blonde since I was about 3! It was so much fun and I really was nervous as to what the outcome might have been but I am so so pleased! In fact before I even went to the hair dressers we had already been into a drug store were I had picked out a vibrant shade of red for my hair. We also picked out a couple of new items for my little make up collection. It's feel so good to add a bit of colour to it and all of it combined serves to be a very nice pick me up. Sadly it won't be staying this colour for long as due to my medicines my hair is very weak so it won't be able to handle to much more dye! 

This picture was taken a couple of days ago in Liverpool with my friend and ex housemate whilst on one of our little adventures where we meet up again and go and explore somewhere. She's a doctor in a very busy Birmingham hospital so trying to find some time to catch up isn't exactly easy. Safe to say we both had a lovely few days. 

Round up!

So many things to sort and do.
Lots of fun outings with friends.
My knee reaaaaaalllllyyyyyyy hurts from a seizure.
Bleached my normally brown hair blonde.
Feeling poorly sick tonight.
Bed.

x

Cheerier note

The past couple of days have been far cheerier than of late which I am very grateful for. I've been out and about with friends making the most of days filled with walking, mountains, chickens, pancakes, rope-swings and plenty of other stuff. I even very unexpectedly joined a choir!! Having not sung in a choir for 10 years it felt lovely to be singing from a music book again even if it was hard to follow all the notes..

Today was a slow day resting from walking so much and tackling some of life's little niggling affairs that need to be dealt with over the phone etc. Bleurgh. I was having a little trouble sleeping earlier for some reason (very unlike me) so I ended up sewing a gift for my friends birthday. I hope she likes it :) Then I popped on here. 

Now I will attempt to sleep again. Night world. x 

Life - What to do?

Tonight I'm not feeling overly great. Really rather miserable actually for no particular reason though, it's just one of those days. I've stayed out of the way of my family just looking for some alone time hanging out with the cat. 

It's night time now and despite being tired I'm not in the mood to sleep.. sounds odd that doesn't it? I think I might get into one of those over-thinking everything moods if I lay my head on the pillow and shut my eyes. I know sleep won't come yet and I don't want to go where I think my brain might take me. My music has been playing quietly in the background while I've been creating a craft piece that I've been asked to make for a charity auction. The song "shine" sung by Birdy came on and I couldn't help but listen to every word. I'm not usually an overly emotional person and I certainly don't wear them on my sleeve but my goodness does this songs lyrics just about some up everything thats flying around in my head tonight. Here's a link... It's a beautiful song :)

You see at the moment I'm trying to decide what to do with my life and I find myself in the clutches of career decision making. It consumes my thoughts almost constantly both positively and negatively. I think I've decided that I would indeed like to progress into the field of radiology, either diagnostics or therapeutic thus combining my passion for imagery and newly acquired fascination with medicine. Either that or become a healthcare assistant. In order to do this I would like to study for a diploma in health and social care and this requires working or volunteering in a healthcare setting. I'm hoping that maybe I will be able to gain some experience in a care home or somewhere similar but that's a whole other quest in itself as I live in the middle of nowhere and with seizures I of course no longer have a drivers licence. So I'm pretty stuck unless I can negotiate some strange working hours to match the sporadic may as well not exist bus timetable for the nearest bus stop which of course is a car journey in itself away. I'll cross that bridge if and when I ever get to it.  

Alas with every excitable feeling I get it's quickly knocked by a negative feeling of what if it's not possible? What if my seizures get in the way and stop me from progressing and achieving my aims? I've fought hard against it before though when they tried their hardest to stop me from completing my degree. Seizures didn't win that time and I'm hoping to make damn sure that it doesn't happen this time either. The thought is always there though, whispering threats at me constantly.

I know it's silly to dwell on the negativities of life but sometimes it hard to do anything else.

Family Matters

The word "rest" is mentioned in my life time and time again. Given that it should always be at the front of my mind I try my best to shove it as far back as possible. Of course there are plenty of times (FAR more than I'd ever wish on anyone) when rest simply has to come first before anything else mainly because of seizures or medication.

I'm stubborn though and it takes the simplest of invites or ideas of something to do and I'm off. So when I was stuck in my hospital bed a couple of weeks ago and my auntie told me she was travelling down to London in the near future I immediately asked her if I could come with her for the journey and take the opportunity to visit my sister and niece. They live in a town 200 miles away from here where we both used to live with our mum, so it's not particularly easy to visit. 

We arrived back late last night from a lovely couple of days. We played in the park, went swimming, visited a friend and spent time chatting over cake in a nice little patisserie in town. Perfect. 

Recent events have certainly added to my knowledge that nothing is more important than family. There's isn't a thing that would keep me from them. x 

Boost

Slowly getting back into life and feeling where I belong.

Hurrah for fresh air and friends!

Released

I'm finally out of hospital. Thankfully. 

This week is all about getting back into the swing of life again. Seeing people, going places and sorting out my surroundings. 

Trying to get back to "normal" I think they call it. It's tiring though. 

Soon I'll type up everything that has happened in the last month since I got so poorly. I'm still counting me blessings for now though and I need to be in the right frame of mind before I go back to that place. 

x

My new physio!

My youngest sister has recently been recruited as my personal physiotherapist! 

Spending a month in hospital has stripped a surprising amount of fitness away from me. Once I was able to walk again a couple of weeks after being admitted I began taking little trips around the ward to work on my legs. I'm not allowed off the ward by myself for obvious reasons but when it comes to visiting times on a couple of occasions I have gone for a walk around the hospital so I can stretch my legs a little further. Without fail though later in evenings just that little bit of exercise leaves me very tired. It's ridiculous really how you can go from being relatively fit to finding a flight of stairs leaves you out of breath??

Now when I'm home the plan is to take a walk up and down the valley lanes where we live to work on my leg muscles and general fitness when we can. This is one of our rituals in life anyway, just ambling along talking about anything and everything. I can't wait to get back to normal again :) 

I know I have to ease myself back into everyday life again slowly so this is a good way to get back into it along with some fresh air. Obviously we will have to be careful and not over do it as the last thing I want is to get to tired to fast, have a big seizure and end up right back in hospital again..

Nice light exercise will be my best friend! 

Please forgive my absence..

On the 21st of January my latest anti-epileptic medicine reached toxic levels in my blood and within no time at all sent life into a very poorly chaos.

I will write up about this scary time that is currently on-going in full at another time. I don't think I'm up for going into to much detail about everything at the moment though as it's all to fresh. Plus I will need to get the stories of what happened from my family to piece it all together as a lot of I simply don't remember.

The basic gist though is that from early afternoon that day I have been in hospital (well two actually). The first being our local general hospital but I was then transferred over to a specialist neurology hospital further away from home. This hospital being the Walton Centre for Neurology and Neurosurgery. 

I have improved massively medically but my doctors have told me I am staying for an indefinite amount of time. I'm not going to complain in any way as this hospital really is incredible.

Much love for now all :) x

Hearty Creation

Well these last few days have been ruled by an almighty headache. Bleurgh.

Before it hit I'd started a little creating frenzy! I've definitely got back into my art and crafts well actually at the moment it seems to be more hearts and crafts :) 

This is my latest creation I completed this morning...

It's hard for me to get my hands to connect with my brain and do what I tell them to. It's very frustrating and a slow process which is taking a lot of tiring concentration but having said that I'm absolutely loving it and finding it very therapeutic. You can often find me sitting in front of the log fire sewing (or trying to figure out a new stitch) in the evenings. 

I think I'm going to try and make myself a little bag to hold all my threads and materials next. Ooo and a little something for a friend of mine who has just moved into a new home :) Best get cracking after some painkillers it's definitely going to take a while! 

Epilepsy Wales

I met up with a South Wales field worker for Epilepsy Wales a while back and after a lovely long chat I am now one of their volunteers! I can't wait to help them out in any way possible. This charity is entirely people focused in offering support to those who need it. For example, visiting schools to provide vital information to the fellow classmates and teachers of children who have been diagnosed with the condition in order for them to carry on life as much usual. They are about providing a face to face aid to people who  experience Epilepsy with Field workers and support groups amongst plenty of other things! 

The first event I attended as part of the Epilepsy Wales team was a self care conference for professionals. The day was hosted by NHS Wales and my goodness was there some complicated subjects talked about. Although given that the room consisted of third sector managers, medical consultants, health ministers and various other government and health professionals I can happily admit I didn't understand everything that was mentioned... That said it really was a very interesting event to attend and eye opening to see the other side of the healthcare coin!

I hope that more of the same will come my way and I can keep on gaining experience and learn.