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Amazing things

Well the last month has brought with it troubles, pain, worsening seizures yet some amazing thing too.  I will go over what other things have happened but I needed to blog about the good things first !

I managed to finally get the rings for mum and I resized and so we could both read them. I brought these rings back in September yet they were the wrong size. Due to stresses, strains and health it has taken me till January to get them resized. However the wait was worth it. Now mum and I have a reminder of the love we share as mother and daughter on our fingers. The best thing about these rings is I designed them – the little ring fits inside the bigger ring to make the heart whole. Just like us. I hope mum will have this reminder of how much she means to me forever.

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I met a lovely lady on Facebook who contacted me about writing a poem about me… She is a best selling author of amazing children’s books. Her first one is on Amazon and there are more to come.  Faye Beerling uses poetry in her books and when she makes amazing pieces for people who buy her personalised poems. Anyway I met this lady and I’m sure we will be life long friends.

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The poem can be viewed soon when I do a special blog for it.

 

Also I have been sorting out my next fundraising event “Epilepsy Awareness Spring Fair” on march 29th 11am – 3pm at St Bartholomew’s Church hall in Herne bay . For map please see Events Page.  Theres lots to organise but I’m enjoying the challenge. This event is the biggest yet but will be fun for all the family so please come along.

POSTER 2 ammeded SPRING FAIR LARGE

 

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My Nan Turned 90 Years old and is looking Fab for it ! she doesn’t act anywhere near that age. Still lives in her own home with my grandad (who is 91) and loves a bit of fun ! here she is on her birthday with her balloon & Badge which she loved opening pressies.

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I saw a friend who I’ve not seen in 6 years…. twice. He came down one week and then again 2 weeks after bringing with him pressies he brought back from his pilgrimage from mecca including prayer beads and water from the Zam Zam well in mecca which is said to bring with it healing properties. The stories were amazing and he always brings with him a new outlook on life and everything really so i had two really good days with him. Seizures were the same but it didn’t seem to matter as much as i was just so happy to see him.

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Also The “Epilepsy Awareness” & “Team Jo ” car stickers have been revealed which is quite exciting !  These will be able to be brought from us at the fundraiser on march 29th and hopefully from our shop which will be up and running as soon as details are sorted out.

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Epilepsy Awareness team jo Epilepsy awareness sticker (1)

 

And ….. this website ! which would not have happened if it wasn’t for Rolf Habing. A very good friend of mine and Team Jo member who I’m proud to have. Rolf you have been amazing over the last month not only with the website but learning about everything and my life enough to stay with me and just chill or play music when I can and know what to do if a seizure occurs. The clogs, cheese and peanut butter sauce & Sprinklets was good too ! I have very few friends with the guts to be with me alone & isn’t scared of me. So thank you for everything. The website Especially.

ROLF  & PEBBLES

Pushing boundaries

It was amazing to see my friends from Australia yesterday. I really enjoyed the catching up we did and it was lovely to see them well and hear all about their travels. However I am paying for having a good fun day yesterday. I didn’t go mad yesterday, I was really very slow in what I did as my head was still in quite alot of pain as were my joints. However I pushed a little and made it to talk and have a cuppa coffee. 
Despite this and being careful and mum doing the preparations and still taking my medication today I am in agony. The pain in my head is much worse, i ache from head to toe and Ive already had 2 seizures today and I think its pain induced. The cluster attacks are more than yesterday and the day before. Im really struggling. Im tired too as last night I was woken many times in pain. After taking my pain meds the sleep is not what I call real – its forced and drug induced and i can still feel the odd stabbing of pain despite being asleep. Its hard to describe.

However was it worth it? Yes. I cannot stay locked away in a darkened room all my life. If i have to live the next however many years of my life like this then Id rather push the boundaries every now and then to do something great than not.

Fun in my life seems to have a price. No matter if  it be having a seizure at the titanic ball or being in more pain than usual because I did more walking or more of whatever. The price is normally paid by mum moaning about how I shouldn’t have done (fill in the blank here) and me saying I would rather live my life and push the limits and pay the price than not have the life or experiences at all.

I think mum can see both sides of the story – or I hope she can. I hope she knows that I don’t do any of these things to annoy her or cause her trouble and Just because I do something she doesn’t agree with it doesn’t mean I think any less of her or do not love her. its not. It because i want to try to be “normal” (whatever that is). I want to live life rather than spend it locked away. 

I love mum dearly. 

You only get one chance at life though and I plan to live it to the fullest I can, and yes I will push the boundaries the next time I want to experience life. 

Don’t loose out on life, you only get one chance and it’s too short for if’s, but’s and maybe’s. 
go enjoy what life has to offer. 


Pain.


Well the last few weeks have been a struggle. Ive gone through many emotions a few different drs and hospitals. The news on all fronts have not been great and ive not been feeling great on top of that. Basically life seems a viscious circle in many ways. The seizures cause joint pain, headaches and stress of family, friends and in turn make things difficult. I want to do things but I get limited by people thinking they know what is best for me when in fact they are making life worse… more stressful because I still want to try being “normal” whataever that is. Its not like i want to be like everyone else… thats never been my style However I want to live life, Enjoy what I can. Yes sometimes I push things to the limit but life is for adventure and for living. Not sitting on the sidelines wondering what is out there. Ive also been having worse cluster headaches. I haven’t spoken about cluster headaches much in this blog I know but yes I have cluster headaches too. Diagnosed when i was sitting with my epilepsy consultant one time and my Dr asked me some (what I thought) odd questions on my next appointment after reading my hospital notes. I answered them and bang – another diagnosis, lot of pills and other things to learn/ understand. Well i’ve been reasonably coping until recently. My episodic clusters have turned into chronic meaning they are several times a day. This does not help the seizures either.
We have also found that my seizures occur when i’m in pain and my oxygen levels drop – hence alot of the time im hooked up to oxygen trying to quench a headache and stop seizures. Sometimes it works – sometimes it doesn’t. Either way its another thing in the way of life. Ive not had a seizure free day (grandmal becasue I dont really count the absence ones) in 5 weeks. Before this I maybe got one ever 2 weeks. Im getting tired now, my joints are suffering badly and Ive damaged my neck. Im now at the stage where Ive got some things in order and now its time to fight or run and damn the consequences. Im not going to run im going to fight for as long as I can and for as hard as I can.


Fight for fun
Fight for life
Fight for a seizure free day 
Fight for a pain free Day
Fight for epilepsy awareness.

 Im waiting for an appointment go go back to london for more treatment of some sort – we dont know what yet. I know surgery is not an option unless they find something new as my seizure focus (where the epilepsy is and starts) is no longer in just one side of the brain but both. its not just in the one lobe anymore but in 3. time will tell but for now I dont know what the answer is. 


A poem edited for epilepsy: 

“What Epilepsy Cannot Do”
Epilepsy is so limited…
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot reduce eternal life.
It cannot quench the Spirit.


Even if just for a moment it does any of the things above… epilepsy and everything else will not win I have epilepsy – it does NOT have me.It is not Who I am – it is only part of me. I am not defined by it – i dont want to be.If I die tomorrow I want to be remembered as the bubbly crazy wacky purple, glittery disney loving girl  who was fighting for epilepsy awareness. Fighting for funding for people to help find the cure we all need. I want to leave my mark on the world. Help and inspire people – that is my wish.

Night night. xxx

Weekend & Confidence boosting.

Well last week I was on the verge of breaking down, this week I hope things are on the up. My weekend started Friday when I had an appointment with my Dr about my ECG and the probability of me going on the new pills… Well Due to the ECG and the “unlicensed” meds The answer was a No – However he will prescribe them if my London consultant says yes. I have an appointment with him on  22nd. Fingers crossed once again. 
For now Im stuck with the situation im in. Medication making me tired and sleepy if I take it – having seizures and being in pain if I dont. Its a conflicting situation. I have no choice with the seizure meds but I try and hold off on the pain killers as long as I can. The likes of Codeine, ibuprofen, Diclofenac and some other injection that I cant spell and morphine are not nice meds to take.

After the recent events Ive been really like a recluse an not wanted to go out much for fear of seizures as they have been quite bad… except the drs of course. 


However This weekend My weekend started friday. 

1) My Grandad is out of hospital. Its a long story but he went in for a knee replacement last year which went teribly wrong. His leg had to be straightened, a year later and the work they had done had broken and crumbled and so he needed another op to repair his crumbling bone. He is now out of hospital with a straightened leg and two rods and bolts through it and in plaster however it is fab to have him out as he normally ends up really poorly in hospital with infection…this time, so far so good all is ok. This also means mum and i do not have to live up there to be with nan. Not that I mind but it is one less hassle of taking all the necessary things up there. And they are both happier now they are back together. 

2) My Camera arrived. Ive been asked to do alot of blogs and vlogs recently and my video camera I previously had (the Flip HD) was not up to the job, plus its hard to video yourself when you cant see what your video’ing. Now I hate videoing myself, moving picture is fine but if I have to talk im not so happy however I do it for Epilepsy awareness so Im trying to get over my fear and improve my self confidence by doing this. Also I need it for the next piece of good news. 

3) Friday I got the news that I am reviewing things for this new company IWBYE which stands for “I will beat you epilepsy”. I am honoured in being the first person ever to receive one of their tshirts designed by them and I will be doing reviews of their products via this blog and my youtube channel (tiggerifficjem) please go take a look at my channel and subscribe. It is totally free to do so and you will get a email when I upload a new video. Also the more subscriptions I receive the more knowledge gets out there and the more I will be doing. 


You can visit them at this address

Click here for IWBYE

4) This weekend was Sci-Fi weekend. Saturday Lara came over and we chilled out, she visited me at studio Tigz  (my little craft and relaxation room) and we had a good time. I re sealed her dreadlocks and we done nail art In preparation of sci fi day. I may look into making some dreadlocks as apparently Lara thinks I would be able to do it and there are few people to get them from. So I will be looking into that when I get back off holidays. Ive got too much to do until I get back.

5) SCI-FI DAY: Yes today Is sunday. I am sitting on the sofa, in my pj’s totally exhausted. I have been here since 2 o’clock this afternoon! Today was the first time I’d been out properly since being poorly again. I wasn’t feeling my best when we left but I took meds and felt I could do it. With Lara by my side I always feel happier. She is one of my true best friends who Ive known for many years and It doesn’t matter where in the world/country we are we will always make time for each other  Anyway so Im exhausted but it was all worth it. Lara came over early and we got ready, Hair and last touches of make up – not that mine was anything spectacular but we both felt better – I wore the Superman (girl) tshirt that lara had brought me and we were off. We arrived at 11am and had a look round, From the outset we could see many characters and costumes and stalls and music and people – there were hundreds of people ! We handed over our tickets in exchange for a hand stamp

The Giant Ghost buster marsh mellow was hard to miss, There were lots of lovely people there including those that helped organise and set this extravaganza of sci- fi up. We walked around the first few stalls and then came to the Activity box stall. It was really good to see Abi and Barbs as I’d not seen them for so long. Lots of hugs all round and I felt happy to be out. My confidence was growing. I left my oxygen behind the stall as It is really heavy. We looked round a few more stalls until my legs couldnt carry me anymore so we went back to the activity box tent for a reset and chat. It was great to introduce lara to other people in my life. I like it when everyone knows everyone – I guess thats the country person (as my grandad would say) coming out in me. I went to another stall on the next look round that done face painting/temorary tattoos’ I chose a nemo design an had it on my cheek. I love the Finding Nemo film – especially the quote “just keep swimming” i really believe that if i just keep swimming in life I will get through this. 
 The day went on and we took lots of photos and video (i tried to do a scilent VLOG for my first one to get my confidence up so I will be sorting and editing that in the next few days and it  will be up on you tube. 
My head started to get worse and at 1:15 I called mum to come and get lara and I . Lara had to go home to Essex too so she had a long trip ahead. I came home and apart from editing a little video and photos I have been resting. I face timed with my other bestie Linda which was fun… I love facetime. We are both getting really excited now about me going up to visit soon. I cant wait. Lots ot do and fun to be had… Of course I will be bloggin! 
Nite Nite for now and Thank you to all those people who made today possible and to those who made me feel more “normal” 
XXX

Christmas & New Year

Christmas and new year is always a time I love and dread at the same time. Its very often full of arguments and walking on eggshells with my dad. However I do love the run up to christmas this year was going to be even more special as i was back at band and we had gigs which are always good but the christmas one is amazing. its the best concert of the year and this year I was going to be part of it!. 

The gig went really well as I always does, Kara and family came, mum came and brought my uncle and my cousins came I really enjoyed having my special people there supporting me. It was great. 







You can find videos of the band at  www.youtube.com/tiggerifficjem 


The gig ended and I felt sad… not only cos of that but because christmas was nearly over for me… I love the run up to christmas, not necessarily the actual day. Christmas afternoon is great as I spend it with my nan with my family but the day up to then is tough. 

This year was ok Well not too bad, Dad drank and he got moody but we survived.  Unfortunately half way through the morning I had a seizure. Epilepsy does not even let me rest on Christmas day ! mum was worried as we had to go to nans and have the traditional dinner. I wasn’t really very bothered with dinner but i managed it after a sleep. Another little rest and a read of my book that i got for Christmas and I was ready for nans. This also went well. This is the tradition I love, Going round nans and grandads and opening parcels, playing with crackers and the traditional who can get the streamers from the poppers over the living room light game. I love both my grandparents to bits. They are 89 and 90 years old so every moment is precious. 


Nanny and grandad Christmas 2012



NEW YEAR and new start? or not. 


New year we were invited over to Kara’s. Well it was the 2nd of January as our new year but to us it was new year. All day I had been feeling grotty, my head was hurting so bad, I stayed calm all day and kept taking the pills as I was allowed and prescribed. I still felt awful. 

The evening came and I selected my clothes, sat on the edge of the bed and knew that If I went out it would be a mistake. I said to mum how bad I felt but she said it was too late… we cant let Kara down this late notice. So I got my clothes on, downed some more medication and kept my fingers crossed. 

Our new years wasn’t the type that your probably thinking… we played monopoly ! The food was lovely although I only had a little and the games and company were good but as the night went on I felt even worse. We left. 
I braced myself as I walked home, and as soon as I got there I grabbed my Injection and pressed it into my upper thigh. This was a full blown cluster and I was about to go into a seizure too…. I was very poorly. The cluster headache died down after about a hour however the seizures didn’t. There isn’t much research into cluster headaches and epilepsy as cluster headaches are quite rare however one of the consultants I have seen told me that a cluster headache inflames the brain and the inflammation causes the seizures. 
I blanked out with the seizures again. That night I ended up in hospital again. So much for a new year and new start. No matter how much you want the seizures to go away they wont. 
I came home and once again ended up with a few days in bed and My eye was black. I was weak but I recovered and The year began again for me just a little late!



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 

  

Finding my feet unexpectedly

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.


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. 


Popped bubbles

I was trying to still have a life despite the seizures however i could no longer go to my band practice that id been doing for over 11 years as it was late night and i got tired. Id had a seizure on the way there and it made me think of how close i was to total embarasment… I was so scared of it happening again while sitting in practice or while on stage at a gig…. in fact I still am. 
Mum and i did start going to Womens institute with kara and her mum. This was ok it was once a month and was a sit down affair and some of the talks interesting.
kara would also come round to mine and we would chat and do crafts… life wasn’t great but it was ok. kara and i loved similar things and had a understanding. unfortunately i couldn’t go round to hers much as he dog jack had taken a dislike to me and tried to eat me on too many occasions for my liking but we still had mine to meet up at.
The results of the telemetry were in. As far as i could understand this was to see if there was a way out via surgery. There wasn’t. The tests showed where it was probably coming from but it stemmed from too deep down and to operate would be too life threatening. So we needed to look somewhere else.
During this time my new consultant had thought about my headaches. He asked me some (what i thought) random questions including did i have a runny nose when i had a headache did i tear. I hadn’t really thought about it before but yes my nose did run and yes i did tear but only from my left eye. Mum and some of my friends had mentioned previously that it looked like id had a stroke when i was having a really bad one. The Dr took one look and said at once he thought it was cluster headaches. Aparently it fit with all my symptoms and he has heard of a increase of people with epilepsy also had cluster headaches. Excellent i thought we know what it is now we can cure it.
POP ! there goes that bubble of thought. There is no cure he said, only treatment. The drug is a heart drug so he needed another ECG report. the other option is Oxygen but we needed london to sign this off as i was still under them.
I went to my gp who done a ECG and i took that back on the next appointment. POP there goes another bubble….. I wasn’t suitable for the drug. My heart results were not normal and so  now oxygen was my only hope. 2 Months later I went to london.
This time the hospital transport system had changed. Meaning unless you physically couldn’t walk it didn’t matter where you came from you needed to get there on your own. I was still having seizures that were violent and unpredictable. A friend offered to take us and mum jumped as she hated London and wouldn’t cope on her own with me in a strange city.
We went to london and after 2 and a half hours in the office we came out. our friend had coffees waiting which was a relief beyond reliefs and we went home.

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.