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One year ago.

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The next 2 days I had night fits and so sleep wasn’t great… dad was being his normal self and so i was a little stressed.
I needed to get out. emails/fb messages and texts had been going between Tory and I so to save me running round doing jobs with mum I went to the activity box. I was scared at first but took my oxygen and had phone off lock and Tory new everything. The day went great. i was exhausted at the end but i did some painting on the floor when i started to ache in the chair….  but still it was great. The work experience boy was a drummer so i tried to get him into coastal band…. i think he may be interested.
Pat, Tory and i spoke a lot over the last few days about my interest in art and the craftbox…I was asked to do the disney side, and to paint a few pieces. 

A few weeks passed and then another blip..
One Monday I was at the craftbox on my art class course… I felt ok’ish… my head was pounding but id taken pills and i was doing my painting. Well i obviously looked ill as Tory managed to get me downstairs… I had a seizure and another and another.. luckily we had oxygen and i was able to come round in between but then that stopped… no more coming round. The ambulance was called and I was taken to the local hospital but different from the one i normally go to. I hate this hospital. I was given oxygen as the fits had stopped and had neuro obs done in a fashion… I can remember being pulled and poked and shouted at while i was struggling to sit and keep upright and stay awake.. I’ve never struggled so so much to keep awake as a dr was shouting. He finished and asked how i felt.
I told him i still had my aura of a funny feeling in my stomach and like i was going to have another seizure.. He told me that stomach pain is nothing to do with epilepsy and i was discharged and out the cubicle in 5 minutes… i guess they wanted the bed !

I can’t remember much apart from the struggle to walk.. I didn’t really know where I was and mum told me she was literally dragging me out the hospital. The next thing I know I was waking up on the cold floor of the outside of the hospital… id had 3 more seizures. There was a couple of nurses i think and i was taken back to A&E. Mum had called dad to come get us earlier on and now he came and I was back… I’m not sure he was happy about having a wasted journey but then he saw a fit and realised this was probability where i needed to be. I was kept overnight and discharged on the tuesday morning.
I was stressed and pissed off and wanted to be anywhere but on this plannet but here I was. Wednesday I was determined that this teapot was going to get done. I went to the craftbox with mum. we had a lovely morning and id nearly got it done. I had a appt with my dr consultant in the afternoon so After a lovely morning of watching Tory and Pat sorting shelves, eating brownies and scones and strawberries, and me painting my teapot and minnie mouse i went to the appt. the consultant was helpful yet disappointed as i was but didn’t say as much i i had hoped… I came back to the craftbox to collect some bits and finnish off as Kara was there now too. Tory had given me a lot of bisque to paint for disney style so she can sell them too.
Kara offered me a lift home which i agreed to but then felt odd… i text mum straight away to come and get me but by the time she came i was out again. I can’t remember much from here on but mum said she came and then Tory called Pat to come down to help. I can remember Pat’s hand and voice at times. Then mum called Grumpy off the bus cos this was the wost she’d seen me.
He came I was taken to the city hospital and stuck onto Phenytoin drips and saline as my bp very very low….. 40/38 ! ! ! 

anyway the next 2 days were awful… I did however meet my ex mentor who was lovely on one of the wards. It was a bit embarrassing though having seizures in front of someone who helped train me to be a nurse.
I had to move from there to the neuro ward and thats when it all went wrong…. The drugs by this time had racked my system and i was not me.. i cannot remember a thing but being in a very small room and dr’s and nurses in the room crowding me trying to explain about brain scarring. I asked if i could have just a couple as i was feeling very claustrophobic and sick but they refused to leave… i apparently became very agitated sat on the floor…. i guess to get out of all the heads and tried to get out the hospital. bloody locked wards !

Kara was there and had gone to the lounge so i went there and i panicked. I phoned the only person i knew understood what was going on and may be able to help me so i wasn’t so crowded with people… Tory.  I now know I probably shouldn’t have but i needed a friend who could talk hospital language and help me stop these people all talking to me at once… I had asked to talk to one person and that didnt work. Tory was my only thought to help… I thought she was a good friend.

She is a friend but at that moment not in the situation on that day….. The drugs had caused me to not know what had really happened that day. I felt back at square one. Alone with no one understanding what epilepsy and these drugs do to my body. I am still doing commissions. I still feel very unhappy and disappointed  that this happened though. I had lost control over my body once again.

I finally got out of hospital on the saturday and received (mum received) a call from my consultant. As we are at the moment we are still waiting to hear and get an appointment for help and talk about london.

Im still having the seizures much worse than i was although i am coming out of them so that is good!
i don’t want to go back to hospital as I’m so so sore . my veins are hard as rock again and all very painful… phenytoin and diazepam and all the other drugs that I get given are  nasty drugs but good as they work.

Magick keept me company in the three weeks i was in bed.
my best friend in the shape of a cat !



I stayed in bed for about 3 weeks after coming out of hospital. The seizures had racked my body. Sore joints and muscle weakness, My left eye had also gone black and i was unable to see out of it. This had happened before but this time it seemed worse Normally it was blurry but this time it was black. 

This was about a year ago….. more has happened since then. 


Loss of Confidence

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If theres something I’ve learnt and thats life is precious. Epilepsy does scare me sometimes and so do the cluster headaches. I try not to show it, i don’t like to and I hope that people wouldn’t know unless they know me wouldn’t know what my life is about just by looking at me… why would they unless they spend enough time with me.   This time really did scare me. I had taken a picture half an hour previous to my fits and the next day when i was out of hospital i looked at it and there is no sign of what was to come. Like a time bomb waiting to go off? 

Painting before my seizure at the craft box


The next few days I rested and watched so many films that I would be great on a tv quiz show!
Monday I was due to go to art class. I really wanted to go as not only was I bored but I wanted to start on my big canvas. The problem was the art class was at the craft box where i had last been and ended up in hospital. I was embarrassed and scared to go back. Being the stubborn person I am (even to myself) i thought it was something i had to do… I thought if i didn’t i would never go back. I Picked up some flowers on route as I felt that Tory really deserved them she helped me that day more than I think she realises.

Mum dropped me off outside and I went in I was shaking, not only because I felt awful but I was so embarrassed. I met the other lady who was there that day but I had no idea how much she saw, if she knew or what as I was too out of it that day to know. She said Tory wasn’t there… My heart sank. I immediately started to feel scared as I knew Tory better and I was so unsure in my own body at the moment. I felt so alone.

I was given a task to do from the art teacher and just sat down and done it… i was shaking inside and my head was pounding. The infection had started to take its toll and my kidney was a constant pain in my side. I finished the task and was actually quite pleased with it. Now for the big canvas.

I started on the work but was so tired i was nearly in tears. I was scared and I felt I had to leave and quick. I made my excuses and left.
I walked up the road, stood alone, still and was in tears what had I done I should have phoned mum before I left. Now I was alone in the street and no help or security. I called mum straight away and she came down to get me.. I when home and cried. What a baby I though… yet now I felt It would be more difficult to go back.

Life was bad again and I was so so upset and tired.
The next day I got up and brushed myself off and told me not to be stupid I went to the craft box. I had to finnish dads plaque I was shaking when mum took me down. I wish mum would go but mum said no and made me do it alone. So i did. I went in and Tory was there. Relief yet embarrassment and I still couldn’t stop shaking.
I done half of dads plaque but was too tired to do the rest. Kara needed to come down that afternoon so i went home, had lunch and slept. 3:30 claire and i went back and  finished the plaques.

 


WHOOP finally happy!

Embarrassment is never far away!

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After the blip i had started living again.
I went to the craft box more and I went out with matt more, I was more confident and was going out with some other friends too.  I started planning things further away and life was good. I was still having the seizures but they were less severe and I was at about 2 a week and I knew to avoid my period time. I started brushing up on my nursing skills by redoing my online training and had passed them all. I was getting ready to go back and I was treating every day as a bit of a holiday. I still went through bad weeks where my cluster headaches would be bad and i would need the oxygen but i thought that iId still be able to go back to work even with that. 
To bring myself into the real world again I started taking my little cousin milly out for day trips. Things were good i was living, making plans yet this time still being reserved.

June 16th 2012

Things were good !  the last 2 mondays I’ve been going to a art class at the craft box as well and I’m still taking Milly out on the occasional weekend.
The last week i have been painting a plaque for dads fathers day pressie. Ive designed it with both his loves in mind. On one side I’ve got his regiment details and badge and on the other his own personal bus stop. On and off I’ve been going in and doing a little.
Last Thursday I was in the activity box with Kara (she was doing a similar thing for her dad but a gardening design).
Over the few days leading up to last thursday I had been feeling a little under the weather I had noticed my headaches were stronger and I had been having a lot of absence seizures. I hadn’t told mum how bad i was feeling as she had been unwell the last few months and I was done with worrying her about me. She done that way too much. Things were on the up so I thought I could cope.

Thursday was going to be our finishing off day. We went in at 10am and painted away and chatting about the usual rubbish we chit chat about. My head was getting worse so i took a couple of my stronger pills and then kara and I took a break to go and get a cake from the nearby cake shop. We came back and had a cuppa to go with it and continued to paint. Half an hour in and i felt strange, My head was bad and i was getting hot I went outside to get some air and as i went down the steps i knew something wasn’t right. I got to the door and it all went blank. I woke up laying on gravel feeling very cold. The lady who owned the craft box (luckily a ex nurse so wasn’t to badly freaked) was holding me telling me where i was. I felt awful and so so embarrassed. Why, How not again were my thoughts. I knew i wasn’t free from the beast but i felt I had gained a little control and here i was being proved wrong. (life with epilepsy is always unpredictable)

The next few hours are really blurry as from what I’ve been told i was in and out of seizures a lot.
I remember getting up and going back into the warm as sitting on a stool. My trousers were covered in mud as was my feet and hands. tory (the lady at the activity box) washed my trouser leg with a cloth and I was holding onto a roll of bubble wrap. I felt really ill and the sensations i were getting were odd as I didn’t normally feel them this strong once the seizure had passed.
The next thing I knew I was on the floor again. this was seizure 2. this apparently continued. I can’t remember what was happening yet i know people were there I could hear Tory’s voice and then mums. I could tell the difference between Tory’s hand and mums as Tory’s was smooth with short nails and mum had boney hands with long nails. Voices were distand and under water. i felt so so cold. I cuddled in a blanket and can remember mum passing me the oxygen. I was trying so hard to stay awake yet i was so tired. I wanted to go home and so tried to get up and get up the stairs. This failed as every time i got up I had a seizure. I can’t remember this part but this is what I’m told.
The next 2 hours are blank as I got taken to hospital and woke up in the resuscitation room with a needle in my arm wires on my body and a drip hung in position. There was a nurse and doctor  asking me what happened… fit? i said groggily?  the drugs kicked in pretty quick and it turned out i had a kidney infection which probably caused the flare up, it didn’t make me feel any better though i couldn’t believe id had a fit while out, this hadnt happened in a couple of months (ok i rarely went out too much nut hey) . i was so so embarrassed.
My head was pounding but the oxygen helped a little.
I was desperate to get home and our friend was there as huge support to mum. Persuasion meant they did let me home later that evening with a large dose of antibiotics and instructions. I was so relieved. I got straight in bed and cuddled in my blanket with magick and the oxygen. It seemed that too long of the oxygen and i would start feeling really rubbish again.

                                  


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 


School & the boffin

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A year on i went to the local high school. I knew i wanted to go to there for years as both mum and dad and my aunties and cousins had gone there…. i’d heard all sorts of stories and wanted to go there and see, feel and have the same  as they had years previously.

I was going out with friends, riding my bike, going to parties and discos and having all the fun a normal kid should have. 
!!!Life was great and I had only just begun to realise its full potential!!!
The roller coaster was speeding off  into a distance filled of disney and sparkles. 

I loved school. there was no other word for it. I would stay to clubs, do extra homework. I was in science club, tennis club, languages club and history club. Whatever knowledge that school had i couldn’t wait to soak it up. The science teacher brought in work from the years above so i could do it when i finished our programmed work. My homework was pages instead of paragraphs and i even got told by the history teacher that it wasn’t necessary…. yet my only reply was i know but i enjoy it! so i was the class Boffin and i didn’t care. 
For the first time in my school life I was able to enjoy school and catch up on learning which I found i loved as i didn’t miss a single day of school due to seizures.



My attendance was 100% for year 7,8 and 9 and my merits were always rewarded at the presentation evening. Life was fab as far as me went. 
Family was difficult at times. My father and I never have got on since well… ever to be honest. There are many stories I could tell about my younger years and the “jealousy” “childish” behaviour my father showed towards me however to a certain extent I do have to edit the “family” part of the blog… because It is family stuff. Maybe one day i’ll be brave enough to fill in the gaps! for now I will say this… things were difficult at times. One story I can tell because, well, it was pretty public for me at the time was My prize presentation in year 8. I had just been awarded with 100% attendance, merit certificate, a science award and the history cup prize. I wanted to go back to one of the other halls where all my friends were with their parents and chat like you do. I went back while mum and dad were working their way there through another door. I didn’t know at the time but my dad had already had some “drink” and he and mum were having a bit of words for some reason that i still dont know. Consequently by the time we all met up in the other hall and there was wine and juice available there too my father ended up having a huge row at myself and mum which included drink and a few other matters. there I was in the middle of the hall making my way back across from talking to my friend and getting a juice drink when i could feel everybody watching my family un-fold in front of my very eyes! its not something I wanted to repeat. Therefore on future prize evenings of which there were 3 I didn’t let dad be present to them, and if there is anything that I want to go really well up to this day I use the same method of him not being present. Its really sad and I do feel I am missing out when I see other girls with their fathers of whom they are proud of and visa vera but that is life. My mum is more than enough to make up for the lack of father figure! 
XXX