Well the last couple of months have been full of ups and downs.
The ups being good days and playing music, meeting friends and the bad being hospital visits, consultant meetings, results and I still cant see out my left eye !
A few weeks ago now I met with my consultant, and another consultant from a high up place in the care of epilepsy in the whole of kent who was lovely but this meeting totally confused me as It was a surprise not to be just my normal consultant. I always have questions to ask my consultant but it all went out the window when I went in and the other man was there, therefore I didnt get chance to say hardly any of what I wanted to ask. In fact I left with more questions.
The man was there to talk about my situation and the posibility of doing something more invasive like surgery. This has been spoken about in the past and I was told a few months previous it looks like it may be possible…. it turns now that this isnt a option yet as my seizures dont just originate from my temporal lobe like they have done all my life but now have also spread to the occipital (explaining the loss of vision from my left eye). This for me was a complete kick in the stomach yet good news as well as at least I knew why my eye had been on and off and now pretty much off for the duration of time.
I liked the extra consultant yet It was a really difficult meeting being told that the end of the line as to what they can do is very near. If surgery isnt a option and the drugs are not working then at the moment we are at a standstill. However there are a couple of other options being looked into as I type so for now all is not lost… its close but we’re not there yet.
The other issue we spoke about in the meeting was my cluster headaches. It makes things more difficult that I have these as well as medication reacts and all sorts of things which I dont really understand myself yet they just said its a little more complicated and they tread carefully. Anyway there was this drug I was told I could try a few months ago. I had to have a ECG though to check my heart as it reacts with the heart. I had the ECG done and I wanted to now start the drug so I brought the subject up. This too was not a option as the ECG came back with a problem…. yet they didnt say what, and that was one of the questions I forgot to ask as they went into a different subject before I could really finnish what I was about to say.
I left the appointment a bit grumpy and down. It was hard being told the end of the road is neigh, but i had a few answers and I knew not to panic about my eye too much and I knew they were now working hard to find me some answers and help.
Still, got to keep going, have faith and “just keep swimming, Just keep swimming” !
Now to wait for the reply and answers.
Daily Archives: May 26, 2013
Raising Money
Just to let everyone know that my fund-raising page is still open
If you would like to help me raise money for epilepsy action please visit
Speaking out.
Over the weeks running up to the abseil I started speaking out about epilepsy more. I was never the type to tell the world about my problems… It just wasn’t me. However after meeting people online and looking back at the people I have met in this world that were rude, nasty and had not any idea about epilepsy I realised that my new friends were right and that more awareness needed to be raised about epilepsy. If you say the word cancer to someone they instantly understand and know what you mean… try saying the word epilepsy and watch the persons expression as they try and analyse you to see if you are mental, or can understand them or are going to attack them at any given moment… its not right.
I looked about on the internet and I relaised that although there are many more things about than when I was a teen there was nothing to really help them or infact the rest of the world know they are not alone.
I then created this video.
This tells the truth about living with epilepsy and tells people about my epilepsy.
Epilepsy is about having seizures but it is more severe than you think and 1000 people in the UK alone die every year from epilepsy.
I Wanted to show people with epilepsy they are not alone and that everyone has down days but life is still worth living. After the struggles I have had in life I nearly didnt make it, not because I have been in intensive care a total of 3 times due to seizure but because I tried to end it all when I was a teen and felt so alone. Anyway this has a positive end of that it is hard but it does get better and it is worth the struggle.
I have since made a few more videos about my fundraising and about epilepsy. There will be more in the future to they can be viewed on my youtube channel. link below.
(please subscribe to me… its totally free and you will get updates when I post more videos)
Ive also done a interview with a online paper and the Local media and I hope when I figure out what im going to do next re fundraising they will help me cover it and raise even more awareness.
Link to the online article below
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| The News paper article about my abseil |
Abseil Day
Abseil day was a amazing experience. I woke up really tired, the weather was wet and cold 🙁 oh no I thought typical !
We got ready, I donned my epilepsy awareness Tshirt and purple ribbon makeup and grabbed all the cameras… We were off. Kara was due to be going with my friend who is also a photographer and was coming to take professional pics. My other friend tink was going with daryl (a friend from dads work). I couldn’t get it round my head that all these people were coming to support me. I was so shocked of how many people wanted to support me (or maybe they just wanted to see me 200fr up dangling on the end of a fishing line!?)
Ok it was more than a fishing line but that’s how it felt that high up!
We all arrived.kara had made everyone team Jo badges to wear! I was amazed!
They were fab.
I went to register and I got my sticker which I put on my shirt. This told everyone i was a participant.
Next we were taken round into a car park, I separated from my friends and was hooked up to a harness. The gloves I were given were far too big and each participant had two pairs to wear each!
We were then taken up in the elevator 15 floors. Then two flights of stairs and another half dozen steps onto the roof. This part was enclosed a little. We had a photo taken.
Then we had to climb two ladders walk across a partition and up another ladder. We were then ready to abseil.
I chose to be feathered to the rather hunky looking ex sas soldier! Wonder why! Ha ha
Everybody had told me the worst part would be going over the top so I was really nervous. I did exactly what the sas soldier told me to do though and it was fun. The view was amazing and I couldn’t help but look down. My feeling was : if I’m going to get the most from this experience I want to see the view!
Once over the edge the hard work started. We went down in twos but the lady who I went down with Sandra had done these challenges before… She was also a bit heavier than me so the rope lowered her down… It wasn’t till the sas man told me I would have to lift the rope up because I was very light that I done that and started to move!
I continued on my way down, soaking up the scenery but getting extremely cold . I am not the type of person that does well in cold. I was shivering and my hands were numb… I was really starting to wonder if my hands would hold me because they were so cold. I continued on my way down… Sandra was gone. Either I was slow or she was really fast! I stopped for a minute I looked down thinking I was nearly at the bottom… Wow big shock…. I was only 1/4 of the way down. I had way over half way to go!
I was slightly worried but knew I was in safe hands I slowly and steadily continued on my way. There was a little squee when the wind we me off the wall and I scrambled my feet back onto the vertical surface again but apart from that he decent went well.
Eventually I did reach the bottom, a big cheer from all my friends, I then disappears behind this wall where mum as was waiting. I started to feel dizzy as my feet reached the ground.. My only working eye went blurry too, I was so so cold I couldn’t stop shaking. I was pushed against the wall to keep me steady while the guys untied me from my harness. Another guy wrapped me in his coat and gave me a drink. I sat on the steel staircase and warmed up.
Once warm (less cold) mum and I went to meet everyone… I had to go back to the desk and collect my certificate. Upon doing so Claire presented me with a rosette and tiara! It was amazing. I cried, all emotions running through me.
We all piled in cars and went back to mine where there was hot coffee, tea and nibbles. It was lovely to have all those people close to me on one room. I felt honoured and privilaged to have so many good friends who supported me and continue to support me.
That day will never be forgotten. It is one of the best times of my life.
After the abseil I had two newspaper mentions and was on the local billboard I was also on line and I had overwhelming response to my video which I will post on the next blog my total fundraising was £720 !
