KCCB Archives - The Epilepsy Rollercoaster

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 !

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