Tag Archives: seizures

Confidence at Gigs

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Stress causes seizures too, and I was under alot of stress over this this past week, There were issues after I subbed for a band last saturday and because of this, I found myself spacing out most of the day and my big seizures well increased a little too. 

The rest of the week I went to KCCB on monday (mark wasn’t there but Kara wanted to come and see if she thought it was possible to sing so there was no probs with someone to go with). It was a lovely practice though hard. I had a lovely pressie from my friend Judi of this beautiful sparkly and purple bracelet… ive not taken it off except to shower and bath yet cos its so lovely.

Bracelet from Judi 


Tuesday was as per normal a bad day for me… I often suffer on tuesdays for the long and late night on mondays but coastal is so worth it. The next day I went shopping for ball gowns… I came up with a georjus red one however it had a stain so I didn’t buy it. I love the style though.We had to get home pretty quick as I was feeling really poorly and had oxygen on route home… I managed to get to bed and chill for the rest of the day.  Kara came round on thursday and we were going to the craft box… we got there though and there was a mass of children… we got our paint and left rapidly. I wasn’t feeling too good 15 mins later anyway so I’m glad we didn’t stay. I didn’t let on to kara though and we managed a couple of shops she wanted to do and then got home. the next couple of days (friday and saturday) I had problems with big seizures. I had 4 tonic-clonics in just one day, I was spacing most of the day too but that was least of my probs. I took it east and just chilled and had mostly pj days on the sofa with films and pussy cat cuddles. Magick knows if i don’t feel right and always comes for his cuddles. I really was trying to be good and rest as I had a concert at a bandstand with KCCB on sunday and really love their concerts. 

The rest paid off and I managed to feel ok to go to the gig. Judi was really lovely and was giving me a lift. Its always a bit scary when going anywhere with someone who you’ve not gone / been alone with before but I trust Judi a lot and she’s a kind person. I felt ok and was (still am) on my stronger meds which I always go on during a bad patch and so I was covered! I hoped. 

The gig went really well but was exhausting (as band and gigs always are) I find gigs are more strenuous as its constant playing and in a different environment. 
Judi dropped me off at the bandstand and went to find a parking  space. the first thing I found was that the bandstand was quite small for the band. The flute section was really tight and I panicked as where I was sitting there would be no way i’d get out in time if I felt a seizure coming on… if i felt it coming on at all (some are just sudden). I always like to be able to get out and here I couldn’t. There was no way round it though. The head of section in bands always sits on the end. Next to her was another lady who would never move in a million years so I just prayed hard that I would get through. Though gigs like this really do scare me to death. Music does make me forget and be normal but there is always that arghh thing especially in public and situations like this that makes me not be able to. 
As the pieces were played I was getting tired, making my anxieties worse. I was so glad when It was break time. I went and sat round the back of the bandstand after saying hi to mark. It was quiet and I wanted to try chill and I did. Mark judi and giles came over and auben sat with us it was all good. I was knackered and felt a bit odd but not too much. I got asked many times if I was ok and that non-defeatest part of me put on a smile and yep im fine. Im sure mark knew I was knackered and on the edge ha ha

This lovely picture was taken at that moment. 


Back: Mark, Front: Giles, Me (Jo), Judi, Albun


After break we had to start again and back into the cramped bandstand where I couldn’t get out! the second half went quite quick and It was good. I had taken my meds that I needed to at break and all went really well. The end of the gig and we packed up and sorted and then walked to Judi’s car which (she did tell me) was parked a long way away…. I didnt realise how far though. I made it but how I dont know ha ha. We had a good journey home. 


I got in and was exhausted. I put my Pj’s on straight away, grabbed a sandwich as I’d not eaten since 10 am and it was now about 6pm ! I sat and watched a film on my laptop but never saw much as I fell asleep. I woke at 8 and had a massive headache. I took some pills and went to get my things ready for the next day as we are looking after my nan and grandad this week so need to get up and go early as we need to light the fire and help them get up and dressed etc. I had a sudden drop seizure. I woke up and mum was there. I must have hit my head on something as I had a cut on my face. It was a little sore and bleeding. It was ok and wiped off the blood ok. I was so dozey and even more tired now mum helped me to bed and thats where I stayed. I must have fallen asleep again and woke up the next morning. (today!). 

Today has been a bit weird but ok. I ave had a headache all day but thats not unusual after a day like yesterday. I am really tired but that could be from either drugs or the manic weekend. Im happy though. Im sitting painting some glass work for my friend Linda. 

Thats it for now guys so say hi send me a message it will be good to hear your stories too. 

Cheerio ! 


Seizure fashion.

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TODAY IS MAY 25th 2013

I have just been the first person in the uk to receive a  IWBYE tshirt (I Will Beat You Epilepsy) . Its a new website with dedicated fashion all about fighting and beating epilepsy. I am so honoured to have the first uk tshirt.
They only have a few tshirts in different designs at the moment but they will be getting more stock soon.

The Tshirt is very me as it even has a purple trebble clef which is even better as I love my music !






The tshirt costs  $20 and $10 dollers shipping. 
Its a little more than Id pay but its a excellent statement and one I live by everyday so very worth it. 

Speaking out.

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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 


The News paper article about my abseil


Abseil Day

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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 ! 


Fundraising start

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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. 

Back to band Practice.

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Some of you may or may not know I use to be in two bands. I left one about 5 years ago however two years ago I also left my favourite band KCCB. I was never very confident after my repetitive hospital admissions sitting in the hall full of 50+ musicians, I was 4 flutes away from the end of the row and with music stands and instruments I worried about being able to get out of line if I felt a seizure coming on. My head was always aching, I was always tired and my joints ached and sitting playing music for that long was also hard. It seemed like I had no choice.
I still use to play music at home with my backing tracks but it wasn’t the same. I didn’t have the stanimer and it wasn’t the best when stopping half way through a tune to hook myself up to oxygen.


So as you can see in the blog life just continued and I got into craft and that was it. However My friend had been coming over and saying about going to the band and about me going back. This was a good friend who had been with me all through the crap and visited me in hospital. He played music too and very often he would bring his sax or trumpet over and we’d play along to the backing tracks… (we still do). One day on september 3rd 2012 it was decided and I was going to go back to band.

I was so nervous and scared.. what if i had a seizure? what if i knocked everything flying or drop my flute? well ok i did drop my flute but it survived!
The seizures were still not controlled and I was having absences throughout every day as i still am and the big seizures were still unpredictable however I had thought about going back a lot and came to the conclusion that i could not let epilepsy take away everything I loved.

I had had to stop my work/job/career which i loved  and couldn’t drive and so many other things that I had been stopped doing because of the beast.. It was NOT going to take my music away too.
So Mark picked me up and we went to band.
I took my flute but only played for half as I went and sat at the back cos blowing was making me dizzy but over all the eve was fab. I had forgotten that buzz of sitting on the front row and the sudden rawwww of instruments coming behind. It made me jump ! It surprised me how relaxed I was when playing music. It was the best drug id taken in years! (music to musicians is a drug… its addictive too).

Music made me happy. Music still makes me happy. I enjoyed that night and from then on I have been back to band almost every week. I do still panic if the chairs are arranged a bit tightly and I cant see a easy way out if i need to. Only at the last gig I had to make sure I had a quick exit just in case.. I am now 3rd in line and playing first flute with two wonderful ladies. It helps to be playing the same part as them as I still cant see out my left eye and so depending how we’re sitting that night or that concert sometimes i cant actually see the conductor very well but i can see glints of the other players flute move up and down, which tells me where we are as ive pretty much learnt how each player holds their flute. It sounds bonkers but I know what i mean and it works.

I was a bit upset one week at band when Id been playing first flute and two of the pieces i got given back were 2nd. Well normally I wouldn’t moan but as I cant see very well I work of memory quite alot and that close to a concert I was a bit grr as to why anyway. the problem was sorted and i got my pieces of music back. I also like playing the same as like i said above… its like having a backup conductor ha ha.

Anyway this is going well for me I love being back at band and I am enjoying seeing everybody again.  Its not only the music but the friends, the conversation it makes life better. The music is hypnotising and makes me forget about all my troubles and just enjoy the music and the moment. Yes Ive had a couple of blips but ive not knocked any stands over yet.
I often loose my place in my music due to an absence seizure – and one of these caused me to drop my flute but it survived and I either find my place in the music or by the time ive come out and woken up so to speak the music has finished but it is still the best thing i done. I Love Monday nights and band and the whole atmosphere. It means I have something to look forward to every week and i love it.
Music is amazing and has given me back a piece of me !


you can view Kent Coastal Concert Band on my youtube channel at

Building of the studio

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Ok so it was discussed between mum and I for a while, i really do need my own space. Being an adult and living at home is bad enough but circumstances mean i don’t really have a choice its just not safe or practical to move out and Im not allowed to work at the mo. Anyway so we have this brick building at the bottom of our garden, its not in great condition but its ok. we have been thinking of extending it and using it as my getaway and craft studio. we found out a few weeks ago that it can be done and they got started monday 8th october 2012. It is now complete and the journey has been amazing (i am still waiting for the tap to be installed but minus a tap it is fabulous!)


Photos of progress are on my flickr feed: 





Its great and gives me something to really look forward to and will be a place i can get away from things and people. 


Yes ! and apologies.

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Tuesday and we had a knock at the door. it was the builders to come and have a look at the white shed to see if the studio could be built.
They had a look and we told them what was needed and WHOOP! yes it can be done.!
and the best bit….. the builders are larry and jamiee.

for a few weeks the blog is slow… 
this is because 

1) grumpy has ben more than just grumpy…. we’ve had lots of issues which will be gone through in another post when im in a mood to bother talking about him.
2) seizures have not been great but we cope. and i got a new toy which will also be gone through in another post.
3) my building of the studio has started…. pictures will go up in a min,
4) ive gone back to band practice which i totally am loving but is another thing draining my little energy, but itss so worth it.

anyway these are my excuses and apoligies for being away for so long.
Normal service and blogs going through each of the above will be going up soon.

xxxx ttfn x x x x

Finding my feet unexpectedly

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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.


Lightning strikes twice

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JUNE 26th 2012


Today was another really terrible day in my book.
Despite waking up feeling positive and happy (well why wouldn’t i?)
dad was going to work… I was seeing nan and grandad Then  Kara and I were going to the craft box I was finishing my teapot and Kara had a pot to complete for a wedding pressie. A good day was planned.
I relaxed and was loving my painting. Kara and I were having a laugh and Tory was chatting away too. She had a work experience boy starting that day and it he was fab too. All was good.


I’d nearly finished the rim of the teapot. it was a detailed bit. I started to feel a bit yucky and put it down to the concentration. I took my pills and continued to paint. I had to stop for a bit though as it was getting a bit much…. i felt my body tense… i felt a rising feeling and a wave of fear came over me. I knew what was happening. I tried to talk to let someone know but nothing was happening. I heard Tory ask if i was ok… i don’t know if i answered or not. i can remember hearing ‘floor’ but i couldn’t move…. the moment passed and i woke up on the floor, Tory right there and purple blanket about. Increasing pain in my head and aching from head to toe… I felt like i needed to get up but i can’t remember if i did or not.
Mum must have been called and when she arrived she didn’t look happy… I guess thats my fault. Mum took me home and I went to bed. 4 hours later I woke up realising the aftermath that must have happened. id text’s and calls missed on my mobile from Kara. I text her back and told her i was fine. She was worried about the pamper eve and if id be there… i couldn’t answer that right then but i said id try.
I had had a bit of a infection previously this month id felt a lot better since finishing the antibiotics but still not great, i pushed it aside  putting it down to my normal aches and pains from the seizures but now i made an appointment with the Dr.

The next day i went and had my appointment. temperature, blood pressure the lot. My temperature was 39 so quite high and my blood pressure low but i normally have a little bit of a lower blood pressure. a couple of tests showed infection. my blood results would come back on friday.  We later found out that they could not get enough blood to test… since the repetitive hospital admissions and IV drugs my veins were hard and unable to cope with much more.  From the other tests It looks like another kidney infection so back on the antibiotics i went. 🙁
Tory had sent me an article on caffeine and seizures. I asked the dr but he didn’t remark much.
I did start the no caffeine that morning though.