Tag Archives: Disney

People’s Kindness

This Blog is just to say a massive “THANK YOU” to all my friends and family for their kindness.
For all those people who are sending messages and prayers of get well soon,  and for my close friends and family who are looking after me through this tough time.

I have so many messages and I do read every single one of them even if i dont reply to all.

Here are a few of the things i’ve been sent and messages and thoughts. Every single one of them im thankful for. There are far more than what is in this blog so please dont get offended if yours isnt here. I cant possible put every message or picture up but maybe I will start to do videos when I get better or something, I dont know. I have alot Im planning at the moment so keep you posted.
for now all I can say is thank you to you all.

Picture Taken from when I had sleepover
In the studio. I made this fish to keep
swimming out of a sparkler! 
Thank you to my Bestie Lara for this beautiful card. xxx

       

 

A chant from a special lady I know xxx

Lots of special wishes from special people xxxx

This picture was made for me by Lara. 
So so cleaver.

Balloon and fluffy from my bestie Claire 
these are from my best friend Linda
the necklace is of a hand holding a sparklie ball.
we both have one cos we hold each others hand and both like sparkles.
I also got nail tips, nail decorations, Sellotape pretty bits for scrapbook,
magnet, tinkerbel necklace and some sparklie tights!

More beautiful cards

This is a case I designed and mum got printed for me
XXX

Beautiful bracelet made for me by a lovely lady
It says “jo, Just keep swimming”

A lovely lady I know from a band brought me these bits back from
her holiday on the Disney cruise line. She knows I love disney.
I can not get over how thoughtful the gifts were but also that they
were presented so lovely. Wrapped in purple tissue paper and minnie mouse
paper and then put into a pretty box with sparkles on.
XXX THANK YOU HELEN XXX
Pirate bandana from Helen “oo ah!”

This photo is of a lovely Necklace that arrived, as complete surprise and was from my best friend Lara. 
I know ive said thank you already but thank you again… he is so cute!.

Halloween


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 

  

WRITTEN ON FATHERS DAY 2012


Today is fathers day 2012 . A day for celebrating dads everywhere. 


Yesterday Mum and I had gone to view our picture on a photo mosaic of the queen at the turner contemporary art gallery, this was part of the queens diamond jubilee. Months before i’d sent in pictures of us all and written stories to go with them (the story had to be about why the picture was special to you) for one of the pictures I sent in a picture of mum and i on the race for life, this is a cause close to our heart as my nan has survived breast cancer twice. The last one she had was the most severe yet it was caught early and thanks to cancer research she is alive to this day. Anyway we went to see it in the flesh and it looks great. We are on the old queen on the crown… very apt i think!


It was the first time i’d been out properly after going into hospital. It was the furthest too. We packed the oxygen and I took it slow, i still feel very delicate and Im almost scared of my own shadow…. this bout has really knocked me. Anyway I got round and then on our way back we stopped of in our town. Mum wanted some things from busy bees and I needed to pick up dads pressie from the craft box. I was so so excited to see it but also worried as i wasn’t sure how it was going to turn out…not only had i done it in 4 sessions but id tried a new technique called etching. I needn’t have worried, The plaque was fab and I was so so excited to see dads face. The plaque was double sided and id put a bus stop on one side and his regiment and details on the other. This was a fab pressie and i was excited already. At home I put the ribbon on and a few beads so i could be hung up. I wrapped the plaque and decorated the bag and wrote the card. Everything was ready.




Dad was working all day tomorrow and was going really early in the morning. As a family in these situations we have always done the occasion the night before so mum said to go get it and we all sat down. Dad was playing on the computer, like he does a lot… i think the solitaire game must have a hypnotic effect cos he can play it for hours without blinking! when he came and sat down he had a spat with mum about having whisky in (which we didn’t) its my fult because i was too tired to go round the supermarket and be able to pick up his pressie so we were planning on doing the shopping tomorrow. Anyway he made some rude comments as is usual for him and said he thought we would have been nice! (charming) anyway pressie was pointed out and happy fathers day exchanged and he had the look of thunder on his face. Oh boy!
he took the bag and opened it… didnt really seem interested but smilied and then put it down. 
well not the result i was hoping for. My heart sank to the floor and I went back to the front room. I put the plaque on the dining room table and sat down. I felt dreadful anyway why didnt he say anything? didn’t he like it? i knew the answer to my thoughts and questions. but it didn’t help as i already felt depressed without him adding more reasons why I should end up on antidepressants.

Anti-depressents were not a route i wanted to go down. Im not totally against them but I take enough medication already and I’m not even sure how they would react with my epilepsy drugs and I’ve enough problems with that already. I like to try my approach… the disney sparklie smile on the outside even if it hurts approach first. I look back on the years and remember my dark days…. i survived them surely i can survive now. Only time will tell i guess but at the moment I feel depressed. I went to bed and thats where I stayed till this morning.

I woke this morning with crust eyes where i fell asleep crying last night. It wasn’t the first time i cried myself to sleep because of family but I wish it didn’t get to me so much. I say I don’t care but the truth is no matter how much he hurts me i will still try and be nice…. what really gets me is when he gets to mum, that i really can’t stand. Last night mum was upset and that made me more upset.

Hey today is another day so maybe things are different.
Mum had put the plaque on the wall and dad was at work. I needed to go visit our friend today, at least i can talk to him. What we really needed to do is  go shopping, If not for anything else but to avoid another evening like last night.
We went to asda. On the way I was on the iPad looking at emails and checking Facebook. our friend had made meringues and asked us round for a coffee! bonus i thought we were popping up anyway :-)
We finished the asda shopping and went round. We stayed for about an hour and it was nice to give bill his card and pressie and actually see a smile. At least he appreciated it.
We then popped round nan and granddads as it was mums turn to play postman. she had brought grandad some ginger wine and chocolate… he favourites. she also got a smile.
It ended up a good day  but the roller coaster isn’t on a high by any means

I look at other people with their fathers and I do feel a bit jealous sometimes. someone to go and talk to … I wonder what its like to be a daddys girl? I will never know. 

Pills, craft and disney


I came home from London with relief and sorrow.
I had the ok for oxygen, but i also had more pills to take. I was now on a total of 19 a day. If they help i don’t care i said.
A few weeks on and a little improvement was seen on the seizures. I had to up the dose of the medication and they meant 22 pills a day but who cares little improvement is better than none.
I was still getting a few absence seizures but i didn’t even bother to say about those any more.
When i was on my menstral cycle the generalised would be worse. The oxygen however meant that my headaches were able to be controlled a little. Sometimes the oxygen got rid of the headache totally. Was i about to get back to work and have a life?
Although i knew deep down a normal life was still far ahead i was getting braver. I went out down the street and posted letters by myself. I went in shops on my own knowing mum was just in the nearby area. I  done craft fairs in public, went shopping and as long as someone was about life was good.
The medication wasn’t perfect as i did have breakthroughs but i went from 5-10 seizures a week to 2-3 big seizures a week. Thats a big improvement.
The oxygen also meant that recovery was quicker. Mum use to grab the mask and give me oxygen when i had a seizure and we found this helped this too. We both started to relax.


February 11th 2012.
After a lovely but difficult christmas came the new year. My friend Matt had become my boyfriend on New years eve and I couldn’t have been happier. I was going out and really living life. He knew me from school (total of 16 years) and he had grown up with my seizures so all was good.
Over the christmas period i had a few blips and had to spend a couple of days in bed as i was too bad after the seizures but i bounced back. Febuary was different though.
Matt and I were dating and our first valentines day was planned to be great. However 11th february 2012 i was taken into hospital. The seizures wouldn’t stop and  again hospital was the only option. I went through the same process as always, anticonvulsants in a drip over night and a couple of days in hospital. i got out of hospital on the morning of 14th february (valentines day) this wasn’t going to be the day we planned as i was too weak but Matt came over nevertheless and we had a lovely evening watching a film. I was happy.
I was a bit disheartened by this blip as i thought we’d cracked it as the seizures had reduced  little and i thought i’d just up the medication and that would be it, but I didn’t give up.


As soon as i was well enough matt and I were off doing things and Kara and i started crafting again. I Started to craft more seriously and sell a few bits too.
Id stopped going to WI as it was getting the same and mum wasn’t fussed so we chose to spend the joining fee on some show tickets throughout the year instead.
Kara and i were still best buds and soul sisters and she introduced me to a amazing craft place. the craft box . You paint pottery then the lady puts it in the kiln and it comes out shiny and looking amazing. We went there often and i started to go there  solo too as Kara could not always do it as she had so many other commitments to clubs and social groups such as drama and craft.

We didn’t always craft. we went to the cinema and shopping and other places too. We even went to the o2 arena and watched disney on ice. It was great Kara was becoming as mad on disney as i was. I felt sorry for her mum as she had the job of taking us but she seemed to love it too. it was a really good day. 


Splitting & Moving

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


USA and the downward spiral

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. 

For the love of a country!

I had been given another medication the name of which i couldn’t remember but i now had that and the carbamazepine to take morning and night.
The last year (since becoming a woman properly!) id been getting headaches… these were headaches like no other and were excruciating. Id bang my head against the pillow crying as the pain was so bad. Mum couldn’t understand why I didn’t lay down and still but the pain was so so bad i couldn’t i felt i had to move. Nothing helped the pain. I was given paracetamol, Ibuprofen and then another painkiller from the dr. This helped a little but no were near enough so i could function. I was then given a stronger medication. I was at he end of a period and I had my headache come on…. i took the tablets and it went enough so i could function but the pain was still bad.
I still went to school but id changed. Again my schoolwork sufered. It was heartbreaking and i felt like a ticking time bomb with my seizures as they were still unpredictable. Despite this i got made  prefect and completed my life long dream of going to disneyland paris that year.
It was only a day trip but it was enough for me. My cousins took me out a lot so i thought nothing of a sleep over at theirs. At 6am i was woken up and we got into the car and they drove. I will never forget when we got to the channel tunnel and my cousin turned to me and asked where we were going? i said France? yes where to? i don’t know…….. long pause.
DISNEYLAND ! ! !!
Oh my word i have never been so happy!
the day was perfect. I was exhausted but i came back with a dream to live in france not only had i been disney’d but i had fallen in love with a country.
********
Id always liked french and id been out with the school before but in a month time I was due to go to a exhibition to represent the school in a capital of european culture as part of a uk and european pledge to become the next capital of european culture! it was a great weekend but the seizures took their toll. The french teacher was great and we had become quite close before hand as id often go and watch french tv in her class room if i felt too tired to stand in the playground for luch break. Most of my french was learnt this way so thank you to the french tv channels !
finally the medication started to work a little and i had  a few months grace. Only to be hit again.
A pattern started to emerge with my headaches and period and it all got too much at one point when i was rushed to hospital after non stop seizures.
I was in for 3 days while i was pumped full of drugs and then sent back into the open world again.