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Halloween is one of my most favourite times of the year. I love the spookiness, the food and autumn nights and it gives us adults a chance to make up and dress up without getting funny looks ! Just the last couple of years Halloween has been fab in our town. There is a group of people who have got together and organise a Zombie craw and this year (the 2nd year) we are also having a zombie ball.

I this year I was going as a zombie sleeping beauty, Kara as a zombie teacher and Mark and his daughter a zombie man and zombie school girl. 

The run up to the even was great I loved dressing up and making up and it was a real buzz. The crawl was to be longer this year and i was also asked to shake one of those buckets where people put money (the events these people do always raise money for some charity). Anyway the night came and we were all made up and ready to go. 

It was FREEEZING ! oh boy it was cold. Mark, nic, kara and I all went and and after many photos the crawl begun. by the time we got 3/4’s round i felt it was literally a crawl i knew it was supoesto be longer than last year but compared to last year it was a hike! 
We all returned to the hall where the ball was to be held safely, exhausted and freezing but the night was young and we soon warmed up. 
The event was a disco and a dj with all the gear was on the stage, the music was loud and fab. I hadnt gone to an even like this since a ball about 7 years ago. I had checkedd before booking that there would be no strobes that would set my seizures off  and  there wasnt… the night went really well and we all had a good time. 
For once I felt normal 


One year ago.

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. 

Lightning strikes twice

JUNE 26th 2012

Today was another really terrible day in my book.
Despite waking up feeling positive and happy (well why wouldn’t i?)
dad was going to work… I was seeing nan and grandad Then  Kara and I were going to the craft box I was finishing my teapot and Kara had a pot to complete for a wedding pressie. A good day was planned.
I relaxed and was loving my painting. Kara and I were having a laugh and Tory was chatting away too. She had a work experience boy starting that day and it he was fab too. All was good.

I’d nearly finished the rim of the teapot. it was a detailed bit. I started to feel a bit yucky and put it down to the concentration. I took my pills and continued to paint. I had to stop for a bit though as it was getting a bit much…. i felt my body tense… i felt a rising feeling and a wave of fear came over me. I knew what was happening. I tried to talk to let someone know but nothing was happening. I heard Tory ask if i was ok… i don’t know if i answered or not. i can remember hearing ‘floor’ but i couldn’t move…. the moment passed and i woke up on the floor, Tory right there and purple blanket about. Increasing pain in my head and aching from head to toe… I felt like i needed to get up but i can’t remember if i did or not.
Mum must have been called and when she arrived she didn’t look happy… I guess thats my fault. Mum took me home and I went to bed. 4 hours later I woke up realising the aftermath that must have happened. id text’s and calls missed on my mobile from Kara. I text her back and told her i was fine. She was worried about the pamper eve and if id be there… i couldn’t answer that right then but i said id try.
I had had a bit of a infection previously this month id felt a lot better since finishing the antibiotics but still not great, i pushed it aside  putting it down to my normal aches and pains from the seizures but now i made an appointment with the Dr.

The next day i went and had my appointment. temperature, blood pressure the lot. My temperature was 39 so quite high and my blood pressure low but i normally have a little bit of a lower blood pressure. a couple of tests showed infection. my blood results would come back on friday.  We later found out that they could not get enough blood to test… since the repetitive hospital admissions and IV drugs my veins were hard and unable to cope with much more.  From the other tests It looks like another kidney infection so back on the antibiotics i went. 🙁
Tory had sent me an article on caffeine and seizures. I asked the dr but he didn’t remark much.
I did start the no caffeine that morning though.