Tag Archives: epilepsy

Telemetry

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3 months passed and i was struggling. I was depressed and upset and each and every seizure brought with it emotional pain as well as physical some seizures would mean dislocated shoulders, bruises and sprained ankles. I carried on best as i could and then an appointment. It came out of the blue but i went. I met the most wonderful Dr id seen since dr terri, surprisingly this dr new terri too. We got down to trying to work things out. I went through my history, my tests. Id brought all my letters and reports from previous consultants and mum was there and explained the seizures.

We also said about my headaches which were more and more violent than ever and becoming more frequent. We started by a change of medication and i was sent to kings college hospital in the city for a telemetry EEG. i was scared as the thought of being in a hospital in the city but on 3rd december 2010 i got picked up by a hospital car and mum and i went to kings college hospital.

Wires!


Telemetry in Kings

When we got there i sat in this waiting room and well….. waited. While there i met a girl who had come in for the same thing. her name was ashley. she was knitting on a hat loom which interested me as i liked to do craft too and had brought in some craft bits. We talked and then I got called in. We agreed that we would meet up later.
I got taken into this room and asked to remove my top half of clothes and put on the front opening clothes id brought. I only had a corset type vest to that opened up at the front so i changed into that and then the man got to work. He combed pieces of my hair out the way and shaved a tiny bit in places as my hair was thick and then rubbed on some glue he then took an electrode and placed it on the scalp. the rubbing motion really gave me a headache as he had to press hard for them to take…. 53 times this was done and eventually i was complete.

I looked like medusa the lady with snakes coming out of her head. i was given a jacket which i had to put on and i was then hooked up to a battery pack. This was then put into the computer and i was taken to a room.
In the room there was a bed, big reclining chair lots of blankets and tv as well as all the normal hospital equipment on the walls like oxygen/suction etc. also in the room was a monitor and a cctv camera pointing at the bed.
I kinda found this creepy at first but surprisingly got use to it quick.
I had to stay in the bed for as much as possible and only go out of the room to the toilet which was just next door. I sat on the bed and the man attached the wires to a long thicker wire. Thats it i can only go as far as the wire would let me.
I tested it out once he had gone and as i walked out the room for a quick test i saw ashley she had been hooked up to and we could only meet from one end of the nurses station to the other. She was in the room next door so she would walk up to one end (as far as her wire would let her) and id walk to the other end (as far as my wire would let me) we exchanged craft ideas and gossip and slid things up and down the nurses station for a week and we became good friends.
She lives quite far but we text and email and call now and then.
After 24 hours of being off my medication id had one absence and one big seizure. I was getting a bit freaked out as the nurses ran in and put the cot sides up before i even knew i was going to have a seizure… i didn’t like this as it was weird them knowing before me!
Kara had made me up a parcel a day to take to hospital. I opened them each day and often found something to do in each parcel which was great and well needed as hospital was boring without not being able to walk any distance as i was hooked up.
I watched many disney movies and talked to the nurses and time did pass.
ashley had been discharged a few days previous to me as her seizures didn’t show up on screen so she would be having another type of treatment as hers wasnt down to epilepsy. I was stuck. When they got all the information they wanted i went home. Tired and relieved to be back on full medication i hoped the seizures would slow down a little now. 

You can’t die

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A week later we went back to the consultant.
I had written a list of questions I wanted to ask as i had been researching like i use to for my coursework to try and find answers to something that may help me.
The consultant was obviously in a bad mood that day he was slumped in his chair. one leg over the other with a book on his knee. He waved his pen and beckoned us to sit. I started to feel uneasy as i started to ask my questions, It felt like he wasn’t listening. When he started to answer my questions my fears were confirmed, He hadn’t listened to the question. I tried to ask him in a different way yet still nope. I started to get upset and he said “we can’t do anything for you but i wouldn’t worry you can’t die from epilepsy” At that i burst into tears, I excused myself and he stopped me, “why are you leaving” he said. I answered because I’ve been trying to ask you questions for 20 minutes and you haven’t listened or answered one of them. You have dismissed all my problems with saying i can’t die from epilepsy when last week you gave me a leaflet about S.U.D.E.P. (sudden unexpected death in epilepsy) With that i left the room.
I sat outside in the lobby waiting area and had a coffee. One of the receptionists came over and said “you had a appointment with dr boo didn’t you?” yes i said. “Do you wish to make a complaint?”
No i said. With that she gave me a tissue and left.
For a receptionist to say that I’m guessing this guy must have had a lot of complaints against him, since that day I never went back to him and have since found out that many people think his bedside manner a lot to be desired for.

New life but same hospital

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We all settled into our new home quicker than i personally thought. I was good though.
I hadn’t realised how cold our old house was, it was a 150 year old timber framed building that had wooden floorboards and a 2 foot hole under and the house stood on plinths. we would get drafts coming from everywhere. Here we were now in a lovely brick build house and no drafts. I went from flannelette pjamers to strappy tops and thin bottoms overnight!
The seizures didn’t stop and the hospital appointments kept coming with medication changes at nearly every turn. My headaches were also getting worse and the hospital consultant was worried. I was sent for more tests.
I first had a MRI and CT scans, a EEG and blood tests. We waited the results anxiously. During this time i was admitted to hospital. It was 2 am and the pain from my headache was so bad i was screaming and pacing the floor. No medication that we tried made any difference. I was having atonic, tonic clonic seizures where i would just drop and seize every half hour and there was no other option left but hospital.
On the way to the hospital i had several more seizures and then when we got to the a and e department they were still happening,  I was put on a drip full of anticonvulsants and given an oxygen mask. I was very tired and must have drifted off. I woke to find people around me as id had another seizure. An hour later i had stopped seizing and I managed to sleep properly. The next morning i was groggy and sick and the medication had made me feel like i was under water. Everyones voices sounded muffled and my ears were sizzling.
I went about a normal day on the ward and then mum took me home later the next evening.
This was not my first and it wouldn’t be my last hospital admission.
Life continued and we received the results of the scans and tests. I already knew my blood results were fine as while i was in hospital i had many blood tests.
We went in and the consultant explained that the mri scan showed that i had several leisions on my brain and they were mostly but not all in the left temporal lobe. This means scaring. It was probably caused by the brain not receiving enough oxygen at some point and the fact I’ve been having seizures for many years. The headaches make these areas inflamed which causes more seizures and the seizures inflame it causing headaches. There really was no winning situation here and it was a lot to take in.
we went home and decided we would wait for a week and then go and talk to him again.

Neighbours and Corgies?

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When we arrived at our new house I walked onto the drive… I could hear yapping lots of yapping. I glanced over as I watched the back of a lady go into the house next door. A old lady and her corgies I surmised? (the area was majority of older people in retirement so it wasn’t a surprise)
I moved a few boxes and found the kettle things were put in rooms and the place started to look something like it belonged to us! I was not feeling well though and the seizures broke through. 
During the next few days of sorting we met our neighbours  that lived down the bottom of the garden. They were lovely and later that day we also met the neighbours to the left.
One afternoon mum called me out to the garden to meet our other neighbours.(the lady and her corgies neighbour) Or not !
The ladies that stood there and talking over the fence welcomed us to our new home. Kara was 5 years older than me and Perl was a few years older than mum but we all hit off straight away. We stood chatting for ages and they were both lovely.
I heard a dog yapping and it turned out to be a jack Russell come collie…. A large dog whom I’ve grown to have a love hate relationship with! Kara was lovely she was at home as well as she has a health condition. We found many similarities of what we liked to do and so became really good friends. She lived with her mum and dad, a cat and the dog and a menagerie of birds.
We arranged coffee and a chat and the girl and me became soul sisters and are to this very day.



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.