Tag Archives: life

Yes ! and apologies.

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Tuesday and we had a knock at the door. it was the builders to come and have a look at the white shed to see if the studio could be built.
They had a look and we told them what was needed and WHOOP! yes it can be done.!
and the best bit….. the builders are larry and jamiee.

for a few weeks the blog is slow… 
this is because 

1) grumpy has ben more than just grumpy…. we’ve had lots of issues which will be gone through in another post when im in a mood to bother talking about him.
2) seizures have not been great but we cope. and i got a new toy which will also be gone through in another post.
3) my building of the studio has started…. pictures will go up in a min,
4) ive gone back to band practice which i totally am loving but is another thing draining my little energy, but itss so worth it.

anyway these are my excuses and apoligies for being away for so long.
Normal service and blogs going through each of the above will be going up soon.

xxxx ttfn x x x x

Splitting & Moving

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I was discharged home to my home with mum. Gavin was having to work so being in an hour and a half away on my own was not a good idea till i got on my feet. Although Gav was good in the hospital when i got home things changed. He became grumpy and wanted me to do things and go places and I knew I didn’t have the energy for . I still couldn’t see and i was scared. How would i be a nurse if i couldn’t see? 

Mum had phoned the university and had my course suspended until i could return they said it wasn’t a problem and all would be ok. This put my mind at rest. 
It took a couple of months before my sight returned, It was still blurry and i i get re-occurent blindness after a big seizure. but i got stronger and stronger. I was able to walk and finally i could see too. 

I went back to life with Gavin yet things were not the same. I was not prepared to do the things that would push me as i was scared of ending back in hospital. Where as once we would travel for hours i was now scared to go more than an hour away from places i knew. 
The relationship ended and we went our separate ways. 
I returned home to mum who was more than happy to have her little girl back. She was far from happy with me moving out in the first place and to have me back at home also meant she had backup with my dad. 

Dad is a whole new story, We have had a off relationship for as long as i can remember. The first memories i have of dad are of me being shut in a dark room with him holding the door closed. The memories that followed were not good ones either. I dont dwell on dad too much. i can’t change him, and i don’t think anyone could. Life is a fight without trying to win one i know won’t happen. We live our separate lives and thats how things work. 
So anyway mum was glad to have me home. 


On 28th August we were due to move. I wasnt going to be moving with mum and dad but overall I’m glad I did. Since moving I met new people, friends and had good times I would never have done if I hadnt moved.
Moving day was difficult for me despite this. Not knowing that good things would come of it I was moving to somewhere I knew little about and didn’t want to be.
I had made friends where I was, I’d grown up partly where I was and I felt comfortable. My house was lovely and I like it I was not keen on changing to somewhere else that was not homely yet. I’d moved from home to be with gavin and now I was packing boxes ready to go again.
Now I’m a Kind of person that would think nothing of going backpacking if my health was different so at the same time moving and packing boxes was an adventure that I also used to de-clutter and clear out. I threw out loads though my Disney collection stayed.
Moving day was difficult. I was not feeling great and I had already had a seizure that morning. Yet as I la on the last remaining piece of furniture I watched the removal men carry out our belongings and bundle them into a white lorry. I moved and the last piece went. As I sat on the floor looking around I was engulfed by sadness, I was overwhelmed as I remembered the happy times I’d spent in this house,

                 
Old House
New House


Intensive care

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I can remember opening my eyes and being wheeled into a big space. This was the hospitals A&E. My seances were all distorted, i could hear but it felt like everyone was distant and muffled. i could barely see and i felt awful. i drifted in and out of consciousness, i didn’t even realise i was fitting. 
I could feel needles being pushed into my veins and i felt like a couldn’t move… yet i was fitting. I can remember seeing mum come up to my head she then faded away as i felt a pressure of something being pushed into my hand and a cold rush up my arm. 
I woke 3 days later in Intensive care. I had no idea where i was or what was happening. Gavin was sitting by the bed and i could hear mums voice. I tried to speak but i couldn’t my throat felt stiff and i tried to move my hand. This was also covered in tubes and wires. My eyes looked up and i saw drip blurry bags hanging and tubes coming from machines i then drifted.  All these machines i now know to be the machines that they were keeping me alive and sedated with. 
I woke up properly 2 days later. I saw dr’s nurses and mum. I was scared and the first thing i can remember saying was about work. I was so scared i was missing work as this was the start of the rest of my life. My career. Id worked 3 years for this… i was embarking on my first work palce and… what was going to happen , what would they say if i didnt turn up?
Mum put my mind at rest and slowly i was told what had happened. The reason i was in itu was because the seizures wouldn’t stop and i stopped breathing in the middle of a major seizure. The drugs i was being given also suppressed breathing and the only way to keep me breathing was to resuscitate and intubate (put me on a machine) until the body rested enough to breath alone.

I spent another 3 days on Intensive care. I was awake yet the drugs were so strong my memories are blurry and i remember very little of what happened. I was still having seizures yet they were not as violent. The drugs relaxed the muscles and the nerves to them meaning when i had a seizure it was happening in my brain and eyes and only the very small muscles would twitch. This was tryngt to help my body rest… my brain still had other ideas. The seizures had taken a toll on my body and I was still weak. The most scary moment was when i realised that i couldn’t see. Close up everything was blurry, it had been for the days i remember yet here i was laying in a hospital gown looking around and i could see nothing. It was all a blue white haze. My heart sank and i burst into tears. With physio i started to move my muscles again yet i didn’t have the strength to walk more than 5 steps .

I was transferred to a ward where i spent a week or so working on it and was then allowed home. I had enough medication to sink the Q.E 2 !



USA and the downward spiral

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I was welcomed to America by brilliant sunshine, palm trees and the swamps of the Florida Everglades as we landed. When we got off the plane the Tarmac was hot to the feet and radiated up the body. It’s the first time I’d felt foreign sunshine.

The plane ride was surprisingly quick…. Fair enough I slept most of it all but the meal and half a inflight movie and a little sightseeing on the little screen and out the windows. I watched as we made our way down from 33 thousand feet and then waited to get off the plane. It was all push and shove an my muscles were aching… probably something to do with the seizure I had 2 hours into the journey. Anyway i was happy. I was in america ! 
When we got though the scary process of photographs and finger prints then getting our luggage we got a taxi to the pop centuary complex. It was basic in facilities but huge and it was Disney so even basic was 5 star to me! I was in my element of the wildest dreams i’d had yet I was tired. I longed for a sleep and then be ready for the next day… Gav had other plans. We went to the hotel to book in and dump our bags…. the bed looked so inviting yet we were out as quick as it took me to look around the one bedroom en-suite room.  Gav took me to the Magick kingdom… You see a ride he wanted to go on was going to be closing that night,, tonight was the only time to ride it while we were in America.
We got there and I was amazed at how big everything was compared to Disneyland Paris. Yet everything still the Disney way, perfection at every glance, not a blade of grass out of place. the music and happiness of everyone filled the air and a glance at the castle made my knees shake, i was here, i was in Disney i was happy!
We rushed to space mountain and Gavin stopped…. The ride looked dark and the adjoining gift shop looked quiet. the ride was shut. On talking to staff it had closed 3 days prior due to a technical fult that made it unsafe. With this news Gavin was not defeated and started leading me into rides. Reluctantly yet still happy and buzzing from being in disney, being in america and being thousands of miles away from home I went….. I was enjoying every minute yet had in my thought that I knew it wasn’t right and I needed to stop, anyway we went on a couple of rides then went onto buzz light years lazer blast. This was a toy story ride where you shoot the aliens with lasers,  It was also a big mistake. 1/4 of the way into the ride I saw all the lights blur and go into bold block colours with a angel like rim around them. The next think I knew I was back stage! Although back stage of disney may sound great it’s not the way that I wanted to see it. Id already made plans of how i would one day see disney back stage by being a reporter for the disney blog or being a cast member for a year…. this was not in my plans.  

Disney back stage is just as a wow factor and disneyfied as the rest of Disney, there is cast land and costume land! I’m not joking it’s amazing. I just wish I saw more of where I was… I drifted off and woke up in our hotel room. 
The rest of the holiday was great. I went on rides, saw characters and i was with the love of my life. yet some things just felt wrong, but i didn’t know how. I put it down to being home sick… although i had travelled without mum before this was the furthest i’d been. I’d backpacked around france, belgium and been to amsterdam yet this seemed more scary! yet I was protected in a disney bubble.
In america disney is like a little country. It has its own  free police force, ambulance service, medical centres, life guards, fire department and a whole host of other normal paying services. if you had the money disney also offers hair dressers, laundrettes, spas, nail parlours, insurance, andd shopping all in its resort. These are all very pricey but if you were a millionaire and loved disney as much as i do America disney is the place to spend your millions.

The only thing I didn’t like was the water parks they were too scary for me… I was quite happy floating round the perimeter on the rubber rings though.,. I did enjoy the bit where you put on a life jacket and let the current take you round the outskirts of the park like your white water swimming. That was fun! but the fast wirling speed down a ramp on a water thing rides are not me. the thought of being up that high and needed to get down and the only option being a water flume scared the pants off me… it did happen once and i went down the flume which made my mind up that never again would i submit myself to the experience !

I really love Disney. I had not been on many roller coasters in my life and id never visited a theme park other than margate dreamland and disney for a day however I’d fallen in love with rock and roller coaster staring aerosmith. While I was at Disney I promised myself I would do everything….but especially go on r&r! i did.  And I did do a lot more ! I’m so proud as I even went on tower of terror which is a elevator that goes up and drops you from the 13th floor…. Now that’s fine but I had a fear of normal elevators so this was crazy for me to even think of going on it… Yet I did!


I went on all the rides had to offer.. Some were ok others I had to go round again! But I struggled through. I saw backstage of rock and roller coaster after watching the 3,2,1 light sign while in the cue and then having a seizure but I kept on going. How I dont know.

We split our holiday with a week and a half at Disney and a week at the royal pacific hotel next to universal studios. I was so so tired at the end of the holiday.. I wasn’t Eating much as It was so hot and I don’t do well in English heat let alone this new american heat. The heat here was severe, the mid day sun hovered over your head and your shaddow disappeared from 11am till 3pm. The combination of not eating, lots and lots of walking, and the seizures meant I lost 3 stone in 2 weeks. I knew i was feeling weak but i didn’t realise it was so bad but when I got home it shocked people. especially mum. I was skin and bone. I found things hard when I got home… I was weak, tired, still having seizures and still not able to eat much. I couldn’t get an appointment with my dr for a week so I went back to work and continued studying. I didn’t want to loose my dream of being a nurse.

My studying finished and my portfolio handed in I was working full time on the ward loving every second of patient care, i was learning something new everyday and had applied for 4 jobs with a promise of a placement in the radiology theatres, the other applications were just a process you went through, the radiology position was my dream and i couldn’t believe i was going straight into it. I continued to work hard. I was finding it difficult and I wasn’t strong enough, and I knew it yet I struggled and struggled not letting it show.
One night I finished work, I knew I needed to go home…. Gavin was working a all night shift so we met and had coffee then i went home with mum. She picked me up and I got home in my bed and slept.
I had a bad night as far as seizures went and the next day was so bad mum had to phone In sick to my work. I was basically out of it. Throughout the day I had 15 -20 seizures though i was recovering in between and slept. by 9 o’clock when Gavin came over  i was getting worse when i had had 4 seizures in a row without recovery he phoned straight through to margate hospital and then put me in the car and took me to margate A & E. Life was about to change. 

Nursing the nation?

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June and i had my acceptance letter arrive from University. Id applied for the nursing course as i needed to get out of physiotherapy. It wasn’t just my supervisor… i expected to have trouble in the future employment after this anyway it was i wanted to help more that i could as a physio.
September 2006 my new life started.
I met my new friends, my colleagues and work mates. My best friend was made here and our bond will be life long.
I flew through year 1. I found the work easy and i was in my element. I loved the physical work just as much as the university course work.
year 2 was not as easy but i still loved every minute. Even the all nighters! I also found love. in the form of another nurse . I was not expecting it and i would have never looked for it where i found it but a simple gesture of lending him and pen and then him returning it (very rare in nursing world…. pens normally find themselves lost forever) brought us tougher.
in my first semester i moved in with him. despite being a hour and a half journey away it was not that difficult as we both worked in canterbury so travelled together and life was good. I loved making home and even liked all the bits that went with that. I still had the odd seizure and they became worse if ill or that time of the month. In the may things took off and i ended up in hospital myself. Things were not easy but i got out of hospital and continued my course and caught up pretty well.
year 3. the start of Year 3 went so quick. in may MY new love and i went on holiday to America. It was my first holiday to a sunny climate. i was happy and excited yet scared as it was far from everything i knew.
I boarded the plane and my stomach sank…. was i doing the right thing?


It came tumbling down

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I had just got the ok to take my driving test and it was booked for a week thursday. I was ecstatic. work was great life was great. Yet i had a niggling feeling. I hadn’t been feeling well the last few days. I was tired It was the wrong time of the month and my headaches becoming unbearable again…. i had a odd feeling but couldn’t describe it to myself so talking to a dr i thought was useless.
I was working at the main hospital and the local one so id my own patient groups in both and flitted easily too and throw by bus yet i craved the car for the ease.
I got to work at 8:30 and sat in the office doing a few bits of paperwork before heading off to the ward. It was a hot summer day and the hospital was stuffy… i gulped down some pills and a glass of water and grabbed my list hoping the pills would kick in quick.
I done a few patients on my own and then met my friend and colleague to do a double patient. our supervisor was there and wanted to check on the patient too as it had been a while since she was there… i took a step back and let her take over .
the room went blurry and i woke up on the floor attached to a sats and bp monitor. I had had a fit.
The world ended again
I lay on the floor and when my fellow work colleagues stopped to talk i explained that i was ok i will be ok i just need to rest. I went home and when i returned to work the next day i was told i was not to be working with my supervisor anymore. This was because of the seizure and she disagreed with me working there at all. I fought for 3 months and finally won over and had my job back and a apology the stress was not needed though my seizures were again controlled and i had my job but i was so close to my dark days it scared me… I made in my head promise to be happy and to think of disney and sparkles for future.

Prom, Ignorance & new beginnings

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Or not……..
Prom was great. I had a long dress, a shawl and 2 men one on each arm a stretched limo and friends … i was a lucky girl. The night was great and i danced for an hour until the atmosphere changed…. I started to feel dizzy and hot and I went and stood outside the hall by the office door…. The disco was too much and i had nearly been captured by the beast again. My prom night ruined for me. I dozed on the big comfy chairs for an hour  in my ball gown determined not to go home or to worry mum by calling her out. I woke and went back to the party. When the prom finished a group of us were due to go to an after party…. We climbed over the school gates as they were closed at the end of the school we wanted to leave and i struggled back to a friends house. Here we stayed up for a while (everyone else drinking, me not as i knew it wouldn’t end well) and had a laugh. I still felt i had a good eve. I went home at 1 am and didn’t wake up till11 the next morning.



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6th form was difficult. My work was suffering as i was still having problems  in class due to the absence seizures… if i concentrated at the board for too long i would have a grand mall as the flickering light was send me into oblivion!


I ended 6th form with my languages (english, french and the spanish id been doing at night school) and my sciences. I dropped history as i just couldn’t fill my brain with all the dates anymore. sad but resigned to the fact i would go back to night school and do it there. The second year i went to my first class. As i walked in the new drama teacher who was also head of year pulled me over. She said “now you don’t have any seizures in my class, I don’t have time for it” I was astonished. what was she on about… how ? what?  i was stunned. I took a deep breath and said in no certain terms “if i could turn a switch mrs James, don’t you think i would choose not to have these at all?, She looked. I turned and walked out… i didn’t look back and never went back to school again. I felt discusted and betrayed but it may have been the best thing of my life to happen. 

As soon as i left i started to panic. Tears streamed down my face as i walked home ( i wasn’t supoeesto be out on my own but i needed to breathe and i knew mum was at work) it was a long way and took 3 hours but by th time i got home mum was there and i had cleared my mind. I told her what happened and she freaked. She wanted to go to the school immediately but i stopped her and said i would work it out for myself.
That i did.
That eve i searched the web and ploughed the job sites. Id filled in so many forms i couldn’t remember what for.
but i felt relaxed that night as i went to bed. knowing i had a new life to start seemed quite calming. Despite not having a clue where that new life would take me, or when it would start.

The next morning i woke to the phone ringing. i reached out to the phone and a lady spoke “is that Joanne *******”
oh no i thought its the school with more issues! yes i said… reservedly. She continued to speak but i couldn’t tell you now what she said. at the end of the call she said she would call me back. I put the phone down and stood back in amazement. mum came in to see who it was…. Ive just got a job i said.
i sat down with mum and told her about the phone call……. i had just been enrolled onto a NHS apprenticeship in Physiotherapy. I would go to college 2 days a week while working at the local hospital. WOW i was happy.
I didn’t know much about physiotherapy so i googled it and found the basics… looks good i though plus i will probably get fit at the same time!
my first day was scary. i went to canterbury college and was enrolled. i filled out forms showed certificates and yes got questioned about my epilepsy which at the moment was behaving itself a little better… i’d not had a seizure in a month. i had a occupational health assessment and it was cleared as long as i didn’t work nights. this was fine as nights were not required at a cottage hospital.
I was into the job  a whole year and id only had seizures while asleep. the medication was great. I applied for my driving licence and when it came through the post it was like my life had changed again. Freedom was on the horizon.

My Label

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A medical bracelet or pendant is a little metal disc, that encloses information and labels the wearer. If you look  you will see i wear a pendant. I used to wear a bracelet but it got in the way alot and it was eassier for people to see, they used to stare and back away and so now i wear a pendant so i can hide it under my T-shirt if i feel the need. It’s not the “Allergic to Dihydrocodeine or Keppera and that causes the strange response, its the “epilepsey”.                  
When people see my label they usually say Oh you have somthing wrong with you dont you? And when they ask to see what it is all about and they see what it says they say “EWE you can swallow your toungue when you go off on one” or “you go crazy and stuff  with that don’t you?” . I really don’t know how to respond, because im not like some mad girl with a psyco disorder, and i’ts impossible to swallow your toungue, it’s just when you have a fit there is a possibility of you biting it, and yes that has happened but its nothing crazy. Sometimes if its a bad fit it continues for ages and i get hurt as i fall and bite my toungue and so there can be blood and so i supose thats what scares people but its not contagious. 
Once when i was away from my friends and family in a shopping centre and ended up in a major epileptic fit.The people around me didn’t know what was going on and understandably got scared. An ambulance was called and on arrival after regaining consciousness they told me i was having an epileptic fit. I told them that i know that as i’ve had epilepsy for years. After much confusion, they contacted my mum who explained what was going on. When i got home we decided it was time to get a medi-alert, in case that happened again while i was on the road again (que the song!!!).
I wear the pendant because it makes things easier in an emergency, not because i want to advertise that i’m different. It has helped me several times having the label, and it’s saved alot of confusion in times when i’m unable to explain myself.   Unfortunatly there are still alot of people around who don’t understand Epilepsy and are scared of me  when they find out. I just ask that i be treated the same as anyone else.
And if there is an inseance where i need help, don’t back away when you read my label.


Funny feelings

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Age 14 and in the end of year 9 i started to get some strange feelings. I put them down to growing up and womanly changes. (we had all had the talk). Somehow i thought these feelings felt familiar yet i wasn’t sure how so put them to the back of my mind and continued enjoying school, karate, and dancing.
We often had presentations and talks in school assembly sometimes science, or music or drama. any type you could waste 15 minutes of assembly with.
I had been paying more attention to music class in the last 2 years. Last year with a lot of help from my class music teacher I had persuaded mum to buy me a clarinet. I loved this clarinet it was old, second hand and all the writing has rubbed off but i loved it and played for hours. I’d even met a boy in the school library who took me to a band practice.
I couldn’t afford proper music lessons so i sat in front the mirror with my book. I then went to the band practice and sat next to the first persition and watched his fingers and the dots on the page and followed. When he stopped i took note of what the marking was and when he went quicker or slower the same thing. This is how i learnt, It worked.
This assembly myself and a few other students were playing a tune for assembly. I had these funny feeling but put them down to nerves as despite all the academic side i hated being centre of attention or on stage. I hated speaking in public or in groups and was pretty much a solo behind the scenes type a gal and thats how i liked it….. the clarinet changed part of that and i came out from behind the curtain.
We played beautifully and took our bow and then i followed the other students off the stage.

As i got near the steps i felt ill. I couldn’t describe the feeling but i didn’t feel good. I took a step down the stage steps to join my tutor group in the ranks and it all went blank.
Im a teenager… this can’t happen to me I’m invincible (well ok not quite but we all think we are at that age!)


As a kid i had many embarrassing times…. everyone does. However as i woke blurry eyes with my head of year and tutor next to me, hearing the rest of the school file out of the hall i was mortified. I’d fainted…. or so i thought. the school nurse was also there and she took me back to the office.
she asked me questions and asked me about my epilepsy history. When my mum arrived she was told that they think i had a seizure. The roller coaster took a loop the loop and headed into oblivion!
I was taken home and i rested…. i was tired. The next day i awoke on the floor.
What, how, hu ! were the questions running through my brain at lightning speed.  what is happening to me.
3 days later Mum took me to the drs as id had 3 more episodes and from what mum remembered of my childhood they were fits.
the dr put my straight back onto carbamazepine, the school was informed and i had an appointment at the hospital.

In two days my life had gone from exciting, fun filled and independent to crazy, end of world (in teenage eyes), embarrassing and not wanting to go to school which I loved and normally craved. I was back on the roller coaster of epilepsy.


At school 


Life after diagnosis

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And yes don’t worry there is a life after diagnosis…. it’s just a little more complicated than before! but we fight it disney style : with positivity and sparkles all the way!So for the next couple of weeks life continued. I went to school and all was ok although after mum told the school I was banned from using the PE equipment as I could fall off!. My mum, had to learn how to use rectal diazepam which would get me out of a seizure if it didn’t happen on its own. I was too young to know or remember too much of the details. my life’s roller coaster was going at full speed and downwards.Life again continued on its merry way and apart from a few seizures I didn’t take much notice. As a young child you take things in your stride and grow to live with things. I wasn’t to know this wasn’t normal!. My mum on the other hand had to deal with the stigma of having a child with epilepsy. I now know after mum telling me that some of the parents told their children not to go near me because I had epilepsy!!! If any of those parents are reading this blog now…. shame on you but thank you because you are some of the reason I am the strong person i am today and am campaigning form more awareness. 
At the age of 7 I moved.  This was great fun as we actually moved on 24th November (my birthday) not only was it my birthday but it was snowing too! great fun for me but not so for the move.I was on a bit of a buzz as Topper and I (topper being out toy poodle)  were staying with nan and grandad who had made me a cake and brought me the biggest polly pocket world i’d seen… I was loving it.  I had to change schools and life was better. We were nearer to the rest of the family and I was going to the same school as my mum and cousins had been to. I met a new cousin while at school that i didn’t even know about so life was great. Then things changed Although i loved school, I was worried what the people, and my new friends would do if the seizures (fits as i called them) reared their ugly head. I would had to face another set of kids with the same kinda questions as the last. It didnt happen and I ended loving my new school, friends and life much better than my old school.