Tag Archives: home

Home at last.

We arrived home. that night pain levels were obviously still high. Higher i think as I’m sure the morphine i had was not as strong as the hospitals however i was home.. i was happier. 
In the end i think its things like comfort, family and friends that help the healing process. My friends are amazing – they come to my hospital bed and they come to my home but when I’m at home its so much nicer and for my friends who are far away I can FaceTime them at home and seeing them makes me happy. basically life was really bad but better at home.



The next morning I woke to severe pain. I had the morphine and we managed to see the GP. It was a real struggle to get up there but we needed to. The GP prescribed something called M.S.T and was told to take one straight away and then use the oramorph when the pain was really bad. 
I continued to do this for the next 24 hours – i began to itch though – it must be a side effect of the medicine. i managed to sleep again but it was restless sleep. 
I dont know if anyone else has felt like this but i was asleep yet i could still feel the pain – i tried to wake up but couldn’t. i call this Kruger sleep cos its a nightmare ! 

The next few days this all continued – with one change of the GP swapping the MST and oramorph for oxycontin and oxynorm. 
This wasn’t a good change though. The new meds made me feel terrible ill and sick and we had to get the GP to come out again –  gave me an injection and we went back to just the oramorph as the other meds were not agreeing with me. Shame as the pain had been less on the oxynorm. 

The next few days I slept on and off – my oxygen levels occasionally dropping and me still having seizures almost every day on top of this. 


Home & drs.

I woke up friday morning with the most painful headache once again. My body ached from all the seizures and I was in and out of consciousness alot. I dosed up on medication and managed to get dressed and downstairs. I didn’t know but mum had asked the taxi driver to come earlier to get me home and he did. He was there at 11am.
I didn’t want to go but I did. I wanted to be around my own hospitals and Drs because I knew i was in trouble. The pain was so bad I was literally crying like a baby… it rarely makes me cry as ive a huge pain tolerance. I said goodbye to linda which was horrible, I love her like my sister and we have become so close… i hated to leave on this note where i couldn’t say or articulate words properly. I got in the taxi, surrounded by my pillows and slept as much as i could as that was the only time the pain was at ease… I say slept yet you never really “sleep” when in cluster phase… I was half awake and could hear a few things and could feel the pain but had almost put myself in a coma state to make the pain less (if this makes sense – cluster heads will understand).
We arrived home and all i wanted was to get my pussycat magick back from cattery.
I was still in so much pain but wanted to make sure magick was ok first. We went to the cattery.. i called his name and I was surprised he jumped up immediately and came to the door and started meowing… in fact he was constantly meowing until i gave him a cuddle… it was the perfect reunion.

On the way home I said to mum, I think I need to go to the drs.. We dropped magick off and got him settled and went to the drs (injections in hand) although given them mum has not been trained to administer and I was in too much pain to focus and hold a steady hand. we got to the drs but I collapsed in the waiting area and had a seizure. I was taken to a room and I had several seizures within the 3 hour time span we were there. My own dr was there (not that I knew at the time) but she was happy she had seen what happens as had not ever seen seizure and cluster headache before. (great dr i have!!!).

I was given an injection but it didnt work so the dr gave me morphine. I was still having seizures but when the meds kicked in they slowed. i started regaining consciousness in between and i managed to sit up. we got home somehow.

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!



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.