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
Some of you may or may not know I use to be in two bands. I left one about 5 years ago however two years ago I also left my favourite band KCCB. I was never very confident after my repetitive hospital admissions sitting in the hall full of 50+ musicians, I was 4 flutes away from the end of the row and with music stands and instruments I worried about being able to get out of line if I felt a seizure coming on. My head was always aching, I was always tired and my joints ached and sitting playing music for that long was also hard. It seemed like I had no choice.
I still use to play music at home with my backing tracks but it wasn’t the same. I didn’t have the stanimer and it wasn’t the best when stopping half way through a tune to hook myself up to oxygen.
So as you can see in the blog life just continued and I got into craft and that was it. However My friend had been coming over and saying about going to the band and about me going back. This was a good friend who had been with me all through the crap and visited me in hospital. He played music too and very often he would bring his sax or trumpet over and we’d play along to the backing tracks… (we still do). One day on september 3rd 2012 it was decided and I was going to go back to band.
I was so nervous and scared.. what if i had a seizure? what if i knocked everything flying or drop my flute? well ok i did drop my flute but it survived!
The seizures were still not controlled and I was having absences throughout every day as i still am and the big seizures were still unpredictable however I had thought about going back a lot and came to the conclusion that i could not let epilepsy take away everything I loved.
I had had to stop my work/job/career which i loved and couldn’t drive and so many other things that I had been stopped doing because of the beast.. It was NOT going to take my music away too.
So Mark picked me up and we went to band.
I took my flute but only played for half as I went and sat at the back cos blowing was making me dizzy but over all the eve was fab. I had forgotten that buzz of sitting on the front row and the sudden rawwww of instruments coming behind. It made me jump ! It surprised me how relaxed I was when playing music. It was the best drug id taken in years! (music to musicians is a drug… its addictive too).
Music made me happy. Music still makes me happy. I enjoyed that night and from then on I have been back to band almost every week. I do still panic if the chairs are arranged a bit tightly and I cant see a easy way out if i need to. Only at the last gig I had to make sure I had a quick exit just in case.. I am now 3rd in line and playing first flute with two wonderful ladies. It helps to be playing the same part as them as I still cant see out my left eye and so depending how we’re sitting that night or that concert sometimes i cant actually see the conductor very well but i can see glints of the other players flute move up and down, which tells me where we are as ive pretty much learnt how each player holds their flute. It sounds bonkers but I know what i mean and it works.
I was a bit upset one week at band when Id been playing first flute and two of the pieces i got given back were 2nd. Well normally I wouldn’t moan but as I cant see very well I work of memory quite alot and that close to a concert I was a bit grr as to why anyway. the problem was sorted and i got my pieces of music back. I also like playing the same as like i said above… its like having a backup conductor ha ha.
Anyway this is going well for me I love being back at band and I am enjoying seeing everybody again. Its not only the music but the friends, the conversation it makes life better. The music is hypnotising and makes me forget about all my troubles and just enjoy the music and the moment. Yes Ive had a couple of blips but ive not knocked any stands over yet.
I often loose my place in my music due to an absence seizure – and one of these caused me to drop my flute but it survived and I either find my place in the music or by the time ive come out and woken up so to speak the music has finished but it is still the best thing i done. I Love Monday nights and band and the whole atmosphere. It means I have something to look forward to every week and i love it.
Music is amazing and has given me back a piece of me !
you can view Kent Coastal Concert Band on my youtube channel at
Over the next few days I got stronger and have found my feet again. Ive still had not gone out and I honestly didnt want to at that moment… I feared of having seizures while out again much more so than while at home… home comforts make such a difference and it’s now i realise that more than ever.
My eye was still black and my veins were still hard… the bruises still there though fading and I felt a little better despite the constant pounding headache and feeling like a weak, wobbly ticking time bomb!
life goes on and mum suggested or asked me if i want to do something. Like what I asked? how do you mean do something? Mum realised i couldn’t go back to nursing for a while and maybe not even want to or will ever be able to at this rate. After all of this was the NHS somewhere I really wanted to work? not sure.
Anyway mum was laying on the bed with me and started talking… I was shocked… I had just been offered all the help i need to set up my own craf business. jewellery making, glass painting (she knew I always wanted to have a go at), painting, blinging, craft. I didnt know what to say or do I was still pretty shocked… mums not the crafty type (I wasn’t until I moved to where I am and Kara kinda introduced me to this world of glitter, glue and wire and beads!)
Anyway the end of this conversation it was decided that I’m going to be helped to set it all up and even have my own space built in the back garden ! i am so so excited… there is a lot to do and sort first but i have already started looking up different projects to start on.
I have a project… I’m finding my feet. I have a reason to get up every morning.
Life is beautiful its the silver lining in the dark clouds.
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.
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.
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,
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!