Tag Archives: band

Worries, Happiness & Prayers

My last post was about sci-fi weekend. well the next day I had band.
I managed to get enough rest to go to band. I love band but with Epilepsy there are a lot of things, worries, situations that I have to prepare for that many people do not see. Monday night my friend was not there.. It meant that before hand I had to deal with mum who was in a small state of panic as to what would happen and how would I deal. I got over this by mums phone number on a piece of paper being given to the conductor… I really hate all this but its safety I guess plus no one would have known what to do really. The next problem was that the gig the band are doing this weekend is at the East Kent Airshow. its a huge event and we are playing.. however to get in you need a ticket. The band get in for free however tickets are about £20 ! thats alot in our world. Money we cant afford for a gig that mum really didnt want to come to apart from to make sure that if I were to have a seizure I could be safe and she could help me and get me home, administer my pills and oxygen. Anyway we got given a wristband each at band and i was praying there would be spare ones… i dont know if there were or were not because they disappeared quickly. They were very coveted. Some people knew my situation and one extremely nice band member who already had brought a family ticket gave me their wristband. I am so so thankful I dont think they can ever know how much that meant to me. Mum hates planes and noise but knows how much i wanted to do this gig. I am so so happy to have the oppertunity to go.
Of course it will all depend on if the beast lets me have a good day but fingers are crossed.

Its not just the gig and the beast I have to worry about saturday. I have a appointment with my consultant on Saturday morning before the concert. Im really worried about this appointment as I get news of what next. Having this news prior to a important concert is not really how Id like it. I worry that if it is band news I will not play well. Then again if it is good news im going to be so so bouncy!

All I can do until the morning is have faith and pray.

Hospital again and drug trial

Well things didn’t get better after the last blog. I ended up in the large hospital about half an hour away, my head pounding and the seizures not stopping. I’m limited into what can happen how as most the drs don’t want to take me to theatre to administer the drugs I could do with fast. So I end up with lots of muscular injections, oxygen and oral meds. I thought this had worked and we managed to get home Monday morning. Unfortunately this wasn’t the end.
 I ended up with one of my own dr’s coming out a few hours later as the hospital drugs wore off and I ended up in the worst pain known (cluster headache has really set in). Having epilepsy is one thing but add that to this disease called cluster headaches which is defined in medicine as “the most painful condition known to man” and life is somewhat harder. So here I was more injections and drugs. My neck was really giving me alot of pain too as Id hurt it in a previous seizure a few years ago and it is a recurrent thing which normally gets better after a few days…. this time it hadnt. It just added to the pain :-(. 

For the next 24 hours I lay in bed sleeping, waking intermittently and more sleeping. I was trying to keep awake but it wasn’t happening my body once again taking over.  

I did eventually manage to wake up and be more alert but the drugs were making me sleepy. I had to get an appointment for the dr that week so 3 days later (when I felt strong enough to get to the surgery I tried to get an appointment. Well like most Dr’s surgeries in the UK despite being told by the dr to make this appointment the guard dogs (AKA – drs receptionists) wont let you book an appointment unless you are dying which at this point I thought I was with my neck. 
The next day I tried again…. I managed to get an appointment with a dr I’d never heard of. 
This is normally a waste of time for me as not many Dr’s are willing to change any medication or do anything without my epilepsy and cluster consultant’s and London consultant being notified first. This Dr however was different. He was lovely. He even had a skill very far and few between Dr’s ……. he listened. 

After a chat and examination it looks like ive damaged my neck as Ive had years of seizures.The epilepsy medication damages the bones, nails, teeth and all things like that so with the combination of medication since i was 4 years old and the recurrent seizures slinging my neck in awkward positions it is not surprising. I received some pills for my neck and then he asked me many questions.. We now have some different injections for home as well and medication to help the seizures when Im going through a bad spell. I already had some but these ones are apparently stronger and the ones I normally have whist in hospital so should mean another step away from hospital. Great!. 

About a year ago now I was told that there was a new drug to help the pain I get from my head and seizures and cluster headache however it was strong and acts upon the heart. I was told to get a ECG heart trace which I did. This was given to my consultant and I was then told I couldn’t go on the new drug. I was not given much of an explanation to my satisfaction apart from it was not right. Therefore I asked this new GP what was wrong with my ECG. Apparently he couldn’t even find it so I am due for another trace on Tuesday. Fingers crossed I will get a better reading and be able to trial this drug and maybe get relief. 

In the mean time I am also staying at my nans during the day at weekends with my mum as my grandad went into have his leg straightened again on Monday. The week has been hard but Ive managed one hospital visit and im at nans as I type. I am so sleepy on the new drugs and feel like im under water. Everything I do is an effort but I am forcing myself to get back to normal. 

Yesterday (Saturday) I installed Laras Dreadlocks ! I had never installed dreadlocks in my life before but with the help of youtube (god I love youtube) I managed it… 
Im really pleased with the result and I think Tink is too.


Today Ive rested and Im on the strong meds again as my neck is pretty painful. It doesn’t seem to matter what I do or what position I am in it makes no difference so its just medication and grin and bare it. The seizures are still unpredictable as usual and I need to get my confidence back fast. 
A spell like this always makes me think about doing anything or going anywhere cos what if I had a seizure…. but if you live life like that you may as well not live at all. Grab the bull with both horns and have faith no fear. 


Tomorrow is monday and I so want to go to band practice. I am going to see how I go and maybe even if I sit out for a bit I will at least get to play something. 
I love my music and could really do with chilling out at band and not thinking about much while I play. I miss everybody too. Strange really as you rarely get to talk to many people while there but Its nice to be with people who I do class as really good friends. 


Kent Coastal Concert Band is an amazing band.


Confidence at Gigs

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 ! 


Back to band Practice.

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