Fundraising start

May 25, 2013 Jo Leave a comment

One of my new years resolutions I made while laying in the resus unit at the hospital was to raise as much awareness about epilepsy as I could and to raise some money for epilepsy research. This is a resolution I intended to keep.

I met some people online this year and lots of groups about epilepsy, It made me even more determined to do what I wanted to do. I started making jewellery with purple ribbons as I was going to sell these for purple day. Then I had an opportunity to do something amazing, stupid maybe and raise money. I had the chance to Abseil 200ft ! despite mum not wanting me to I booked and took the bull by the horns! I was excited but terrified at the same time. Ive never been up that high in the fresh air before so had no Idea how I would react. The date was set…. 17th March 2012 !

A few week into my raising money and sponsership campaign I had a text from my bestie friend who I met last summer…. Linda. “what date is your abseil?” I replied… the next text “Jade and I are coming down to watch!” OMG OMG OMG My best friend tink had already said she would come down… now linda too I was so excited. The next couple of months were crazy, advertising, planning and raising more money than I dreamed of. I thought Id be able to raise £50 maybe £100. Well when I reached £200, then £300 then £400 I was shocked !

Linda and Jade were to come down on the friday and then I would be staying at the hotel with them and then saturday would be a girlie day and sunday abseil day !

Friday was amazing, Id not stayed away from home in 5 years, unless you class hospitals !

The friday arrived, Linda and Jade arrived and all I can say is we had a amazing girlie weekend ! I am so so greatful to them for coming, It made my year! Im so lucky to have some brilliant true friends.

Me on the saturday.

Christmas & New Year

May 25, 2013 Jo Leave a comment

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

May 25, 2013 Jo Leave a comment

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