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Ruling my life

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I am sick and tired of people trying to rule my life. If i dont have enough issues without not being able to make any decisions without them being contested at every point.

So yes I went to the ball last night…. I felt a bit like cinderella when the beast came out at midnight ha ha (it wasn’t midnight) but you know what i mean.
I now find out that apparently mum was so cross last night cos when pauline came to the door she said “she’s fitting, she’s fitting!” mum was rushing about getting her coat and bag thinking she was coming to get me and then i was there… i wasn’t fitting i had had one fit , one seizure. i was ok and i was home. Slightly dramatic in the way pauline started her introduction had mum on even higher alert!

I was so told off last night I felt like a little child. This morning no different. I was getting more than the third degree. I have a gig to play at this afternoon (sunday) and I am going, Yes ok my tolerance without oxygen at the mo is incredibly bad, bout half our to an hour at the most but today its been basically non. Had to have oxygen in all day. Well obviously mums not happy bout me playing at a concert blowing into a flute but you know what I want to give it a go. I dont even know if i can play with oxygen but if i can without effects I will. If not its a lovely sunny day and I can sit and watch the rest of the band. Its not the end of the world. I will deal. I do not want to be cooped up in doors on this lovely day with mum moaning on about me and life and how I should be more careful.

CAREFUL ! ! well how careful can you be with epilepsy ? it is unpredictable… you never know when the next seizure will strike. The only way i can be 100% careful is if what? i stay in bed and dont bother moving? that way i wont hurt myself (oh but then again i may suffocate myself on the pillows!) there is no 100% way to be careful with epilepsy. Its unpredictable seizures that strike you down at any time.
Without putting everything in life on hold which is ridiculous and like i told her i may as well be dead anyway then …. I just need to live.

Well I tried to talk to her. after all she is my friend as well as my mum. We normally have a ok relationship and are pretty close. I started to talk to her and try and get her to see it from my point but all I got was shouting about all I am doing is thinking of myself and Im being reckless and stupid and pushing it. Im not pushing it im just trying to live while I can i said. from this i got “well you wont be living vey long at this rate… your going to kill yourself” !

Well what can you say to statements like these!.
I was really upset that she couldnt see it from my point of view.

I put across that just let me finnish what i want to say..
When you were my age you were travelling all over the UK. You were married, had a job and a life.
now look at me. My partner who I was going to spend the rest of my life with left me because epilepsy became to much trouble to understand and he was a nurse! my next partner couldnt understand I couldn’t travel all round the world cos i couldn’t afford insurance and taking all my meds means alot more preparation than oh lets go here tomorrow.
Im a fully qualified nurse who has given up her pin number because she can not pass the occupational health assessments (not to mention I had just been accepted to my dream job in nursing! )
I have been stuck at home since being taken into intensive care where I nearly died.
Ive basically lost the sight out of one eye and live in a constant un-knowing of when the next seizure will strike.
You lived your young life with nothing hanging over you. You never had to worry that your body would let you down. You never went into hospital… Ive been in and out of hospitals since I was 4 years old. You see it from a mothers view, you wont even try to see it from mine.
I do not want my life to be “Just” full of hospitals, pills, injections, oxygen and all the other medical stuff. I want to have the good bits too. I can see it from your point but you need to see it from my point.

If I die tomorrow I want to die with no regrets that I wish i’d done that or this. I want to do what I like and love while I can, when I can. I have no way of knowing what the future will bring but while I can do things I will.

Anyway I went to the concert and I managed to play with oxygen. It went really well and i enjoyed it.
When i got home though I had another argument as mum and dad started moaning a me.
I was being told how much i was hurting them – they could not even see how much they were hurting me more than they could know. I couldn’t bare no more. Im not allowed to go anywhere on my own.. haven’t since being in ITU the first time as Drs say its not safe. Despite this  I got dressed grabed my portable oxygen and ipad and went out …. Im not saying where I went cos its my place to get away. Im not normally like this I have only once done this before in the last 4 years I need to be with someone 24/7. However this really was a get out or go mad situation. I was so so upset that they would not even try to see it from my point of view. I just sat and cried for a long time. I then reached out to a really good friend. Amongst this mum text me and did in her words did say sorry. I waited for a while before I went home though… I was actually enjoying the being on my own thing. it was nice to be alone. The sun was setting and it was beautiful, still and quiet.

I came home exhausted though. I went to bed.

Hospital again.

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Saturday morning I woke up and the pain was yet again intense. I went straight into multiple seizures.
Drs say that Status epilepticus is the most dangerous state for epilepsy sufferes. It takes so many lives. A person with epilepsy may experiance this once or twice in their lifetime with the disease… So far Ive been in status over 20 times and now 3 times in 3 days. life is getting scary.

I ended up having the paramedic and ambulance out and remember waking up with a IV line in which is very unusual as people normally cant get a line in. I was in and out of seizures for over an hour and I woke up in Kent and Canterbury hospital. It felt safer to be at home hospital though. somehow I cant explain. When the seizures stopped I was taken to a ward and had to wait to make sure the meds were working. I was given lots of extra meds and then claire and her dad came to get us to bring us home.
I was supoesto do a gig that morning but obviousley had to cancel. However it was the ball tonight and I was not going to not go. I had determined face on! My friends were down and I had the dress, the tickets and the will power I was going to go.

My best friend Lara came round early and helped me get ready, she managed to turn my palor complection into a 1900’s lady! without her doing my hair and makeup i really dont think i would have got there it was exhausting and i wasnt doing anything.  We were all ready I couldnt wear my heels as i was having issues anyway but my dress was so long no one could see my sandal flats ha ha.

We went to the ball and had a fab time… I done some dancing with mark and the girls and we all had a good time. we even had official pics taken. The night went on and i started getting hotter than normal. My eye kept watering. We had just been given an award for best costume and i needed to sit down. 
I went and tried to find a seat, feeling weak and wobbly my head was pounding and i was all a bit blurred. I can remember Abi saying lets go outside and I felt cooler. I thought i started to recover a little and then that little sensation that I dread. I woke up on the grass. I can remember being told to squeeze hands and I think i did. i hope i did. Claire had honed pauline as arranged and we managed to get home. I knew I was in for trouble and I was right. That night when I got home and everyone had gone all hell broke loose and I was in so so much trouble. I just wanted to enjoy myself. I got the “you could have killed yourself for pushing it” well maybe i could but then If i dont do things im stuck indoors and then what is the point of living? none. Id rather die doing something I enjoy and love. 

Great times and bad times

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The morning of Jades Prom arrived. We had fat club in the morning (well I was visiting with Linda and Jade – before I get any of you curse me for trying to loose weight – IM NOT)
I woke up that morning knowing the day was going to be a struggle. I took my extra meds and kept my fingers crossed. I dont know how many seizures I had before we went that morning but I was close to a big one before we left I know. Thankfully It didnt happen.
We arrived at fat club and i recognised alot of faces from facebook and people Id spoken to via Linda. It was Lovely and really friendly.
There was a display going on and I took a look.

2lbs of fat !

jelly and cream (or a pint?)

One of the ladys whom I talk to on facebook Pat gave me some harribo… Linda and I were going to try vodka harribo at some point but these ones were to eat too. I had some hoping the sugar would help. 

everyone was lovely. 
During the meeting I started to struggle – I had to result to oxygen but it was running out. We got home and I felt my head start to feel really bad. I took pills, my oxygen and headed to the sofa for a rest. 
Jade was due to have her hair done at 2pm. I wanted to document her prom for her… I had 1 hour to rest and get rid of this headache. Well I did rest but the headache didnt go. 
The next few hours were preperation for jades prom. I took so many photos just of her hair being done.. 
I then went and rested and I really dont know for how long…. when the pain and strange feelings get to this point time passes that is all. I think I slept a little but I dont know.

Jade came down… I was awake and she looked stunning. I grabbed all the energy I could and my cameras and started snapping. We went outside and took some beautiful pictures and then I was honoured to travel to the prom with her… I took more pictures too. I was struggling the whole way but I love taking photos and it was Jades big day and she was so pretty.
When we got home however I dropped the camera and tried to edit some pics. In the end I had to resort to bed but I never got there. I went into status epilepticus and dont remember much I remember waking uo between a couple of seizures and Linda holding my hand, she will never know how much that helped. It was weird cos normally I can hear alot more than i could this time… everything was too distant and too scrambled. I struggled as much as I could to get up and stop but the seizures kept coming. I was taken by ambulance to Grantham hospital and I woke up again in resus at Grantham General Hospital. I couldnt undersand the dr, and what I could understand he wasnt listening…. my case is quite complex and they never seemed to understand. There was one really nice nurse who helped. I had a few tests and they gave me some medication and i was told to sleep…. yeah right ok so i slept, and they would wake me up for blood pressure,.. so id sleep again and the bin would bang down so loud i ended up having another seizure. In the end once id recovered from that seizure I self discharged myself. we called linda and she came and got us. (THANK YOU SO MUCH).

in Grantham hospital

Robin Hood Country

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I am just going to say that the holiday blogs are going to be just that until the thursday. Yes I had seizures during the week. some big ones, lots of little ones but for once I want a little bit normal stuff on here just a week. 

So It is Sunday and sherwood forest was calling… Well not literally but we were off to sherwood forrest. This is something Ive wanted to do for more years than you can imagine.. It was on my bucket list and something that i read as a child and said then “i want to go there” ive said it with ashdown forrest too (the 100 acre wood for those of you that do not read winnie the pooh novels).

Anyway we were all ready (ralph, Linda, Mum and me. Jade couldnt come which was a shame but we all piled in the car). Ralph I now know is a ex chauffeur which makes total sence now as he took us the long way round to show us the beautiful sights of the area. I was literally stunned when we came across sights such as this:

We arrived at Sherwood forrest… somehow it was not how I imagined. This is not a good or bad way just completely different than my pictures I had in my head. It was also alot bigger. It seemed ages before we got to the car-park and then we had to walk a long long way to the Major oak. The major oak was stunning, though tainted by supports that kept the branches from falling down in storms. It seemed so sad that something so naturally beautiful was now subject to being held up by man made structures. However it was still beauty, Just like everything, beauty lies within.

There were other trees round the forrest that were “quirky” too 
This was my favourite 

on the way home we had a picnic in the grounds of a beautiful abby, It was like a dream, I had just visited the major oak and was now on the grass picnic and blankets and calm, peace, no grr’s nothing. seriously amazing all I can do is thank the people who made it happen because you will never know how much that meant.

Mum, Me & Ralph
Mum and I 

Me and my best friend 

By the time we got home I was exhausted, I ached all over from lots of walking but It was one of the most amazing days ever.

living in a bungalow !

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The next day was saturday, this was a chill out day really as we had a important show to go to…. jades! 

We did however open our pressies we’d brought each other and dyed my hair… purple ! yes i know bit crazy? but hey it was something off my bucket list so why not ! 
Anyway we dyed my hair, it went how I wanted it to in the end… it was a bit traumatic really as i had to have it bleached first….. i have a hell of a lot of hair. By the near end my head was pounding and I was getting tired but we finished it and the result? amazing ! 
me and linda, the pink and purple girls!
During and after hair dying we opened our pressies,…. I found out this was not just going to be the only thing i ticked off my bucket list ! 

there was also one more (picture cannot be found yet!) 
anyway all pressies were put to one side as we had a show to prepare for ! 
Jade was red riding hood in the play into the woods in the GAPA variety performance, I’m proud to say she stole the show.

The first half to be honest could have done with more work and it was only jades group dance that saved it. The second half was excellent but then im biased as Jade was in the second half alot. It was great to finally see her perform and do her stuff. One talented lady is going to come out of that girl and even more so now she is starting college. 
We came home (or rather we sat on a street wall for half a hour as James came to rescue us from our flat tyre).
James did rescue us and we went home. I sorted a entire 64gb worth of photos out and then woke up under the table ! Yeah seizure hard concrete floor but lovely people thankfully caught me… or so im told ha ha…. i didn’t have too many bruises anyway! That was the first sudden seizure Linda had seen… It was really horrible waking up on someone else’s floor not knowing what they just saw. Linda is one of my bestest friends in the world but it didn’t make it any easier until I felt that hand. Somehow when someone isn’t afraid to hold your hand you know its going to be ok. 
Yes this seizure may have been caused by tiredness, exhaustion, and lots of music light and a headache but it could have happened anyway. I always think that unless i fall and drop there and then at the point of the lights camera action or whatever… it could be anything. 
After I recovered we went to bed… Stairs after a seizure Very new concept of trying to tell my legs, feet and body to move in a upward direction before I can rest (i live in a bungalow and im so glad!). 

Weekend & Confidence boosting.

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Well last week I was on the verge of breaking down, this week I hope things are on the up. My weekend started Friday when I had an appointment with my Dr about my ECG and the probability of me going on the new pills… Well Due to the ECG and the “unlicensed” meds The answer was a No – However he will prescribe them if my London consultant says yes. I have an appointment with him on  22nd. Fingers crossed once again. 
For now Im stuck with the situation im in. Medication making me tired and sleepy if I take it – having seizures and being in pain if I dont. Its a conflicting situation. I have no choice with the seizure meds but I try and hold off on the pain killers as long as I can. The likes of Codeine, ibuprofen, Diclofenac and some other injection that I cant spell and morphine are not nice meds to take.

After the recent events Ive been really like a recluse an not wanted to go out much for fear of seizures as they have been quite bad… except the drs of course. 


However This weekend My weekend started friday. 

1) My Grandad is out of hospital. Its a long story but he went in for a knee replacement last year which went teribly wrong. His leg had to be straightened, a year later and the work they had done had broken and crumbled and so he needed another op to repair his crumbling bone. He is now out of hospital with a straightened leg and two rods and bolts through it and in plaster however it is fab to have him out as he normally ends up really poorly in hospital with infection…this time, so far so good all is ok. This also means mum and i do not have to live up there to be with nan. Not that I mind but it is one less hassle of taking all the necessary things up there. And they are both happier now they are back together. 

2) My Camera arrived. Ive been asked to do alot of blogs and vlogs recently and my video camera I previously had (the Flip HD) was not up to the job, plus its hard to video yourself when you cant see what your video’ing. Now I hate videoing myself, moving picture is fine but if I have to talk im not so happy however I do it for Epilepsy awareness so Im trying to get over my fear and improve my self confidence by doing this. Also I need it for the next piece of good news. 

3) Friday I got the news that I am reviewing things for this new company IWBYE which stands for “I will beat you epilepsy”. I am honoured in being the first person ever to receive one of their tshirts designed by them and I will be doing reviews of their products via this blog and my youtube channel (tiggerifficjem) please go take a look at my channel and subscribe. It is totally free to do so and you will get a email when I upload a new video. Also the more subscriptions I receive the more knowledge gets out there and the more I will be doing. 

You can visit them at this address

Click here for IWBYE

4) This weekend was Sci-Fi weekend. Saturday Lara came over and we chilled out, she visited me at studio Tigz  (my little craft and relaxation room) and we had a good time. I re sealed her dreadlocks and we done nail art In preparation of sci fi day. I may look into making some dreadlocks as apparently Lara thinks I would be able to do it and there are few people to get them from. So I will be looking into that when I get back off holidays. Ive got too much to do until I get back.

5) SCI-FI DAY: Yes today Is sunday. I am sitting on the sofa, in my pj’s totally exhausted. I have been here since 2 o’clock this afternoon! Today was the first time I’d been out properly since being poorly again. I wasn’t feeling my best when we left but I took meds and felt I could do it. With Lara by my side I always feel happier. She is one of my true best friends who Ive known for many years and It doesn’t matter where in the world/country we are we will always make time for each other  Anyway so Im exhausted but it was all worth it. Lara came over early and we got ready, Hair and last touches of make up – not that mine was anything spectacular but we both felt better – I wore the Superman (girl) tshirt that lara had brought me and we were off. We arrived at 11am and had a look round, From the outset we could see many characters and costumes and stalls and music and people – there were hundreds of people ! We handed over our tickets in exchange for a hand stamp
The Giant Ghost buster marsh mellow was hard to miss, There were lots of lovely people there including those that helped organise and set this extravaganza of sci- fi up. We walked around the first few stalls and then came to the Activity box stall. It was really good to see Abi and Barbs as I’d not seen them for so long. Lots of hugs all round and I felt happy to be out. My confidence was growing. I left my oxygen behind the stall as It is really heavy. We looked round a few more stalls until my legs couldnt carry me anymore so we went back to the activity box tent for a reset and chat. It was great to introduce lara to other people in my life. I like it when everyone knows everyone – I guess thats the country person (as my grandad would say) coming out in me. I went to another stall on the next look round that done face painting/temorary tattoos’ I chose a nemo design an had it on my cheek. I love the Finding Nemo film – especially the quote “just keep swimming” i really believe that if i just keep swimming in life I will get through this. 
 The day went on and we took lots of photos and video (i tried to do a scilent VLOG for my first one to get my confidence up so I will be sorting and editing that in the next few days and it  will be up on you tube. 
My head started to get worse and at 1:15 I called mum to come and get lara and I . Lara had to go home to Essex too so she had a long trip ahead. I came home and apart from editing a little video and photos I have been resting. I face timed with my other bestie Linda which was fun… I love facetime. We are both getting really excited now about me going up to visit soon. I cant wait. Lots ot do and fun to be had… Of course I will be bloggin! 
Nite Nite for now and Thank you to all those people who made today possible and to those who made me feel more “normal” 
XXX

I will not give up

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When I was diagnosed with epilepsy all those years ago we were told the things that I could and couldn’t do, the things that needed to be watched and what I should and shouldn’t stay away from. Some of these made seance, others didn’t. Some because of my age then (4) didn’t apply anyway. When I was re-diagnosed as a teen some of these started to play a part whereas they hasn’t before one including not having a bath or shower without someone being about. Outside the door. This is one of the most frustrating things I think because having a relaxing bath isn’t as relaxing when your constantly aware that someone is sitting outside the door waiting for me to get out so they can continue doing whatever it was they were doing. I have only had one seizure jn the bath and i was startkng to get complacent again recently until However I realised once again how important this was. Tuesday night when I was relaxing after a long day I woke suddenly in the bath to find the water drained and my head hurting and me in the bath surrounded by soaking  towels. The feeling of pain from having a seizure in such a hard and restricted place my nose and throat sore from swallowing water and my contact lenses still in but really sore and hard in my eyes. I was lucky though… So many others have been where I am and not made it, the beast taking them to heaven. Just three months ago another angel was taken this same way. The risk of drowning in epilepsy is higher than you think. 



The next day I had another seizure and another and another. My head was hurting so bad and my painkillers weren’t working. I had oxygen on and there was not much else we could do for now. The dr wouldn’t come until it was worse. Well it got worse I can’t remember much of the next few hours. Mum had called the dr in panic and tears that if they didn’t come out and administer the emergency drugs now then we would end up in hospital which is useless for me now as my veins are so bad iv access is impossible with light going to theatre and the hospital staff get grumpy even though I cannot ho my veins being difficult to access! 



The dr came about a hour and a half later. I was given a series of injections one in my bum and two in my arm. All having a different purpose and all combined making me really sleepy and woozy. This is not an uncommon syndrome for me. So many times I end up in this situation of pain from the cluster headaches and the epilepsy seizures all at once fighting inside my body and trying to take over, they succeed and I end up poorly and bedridden for a few days recovering from the aches which my tensing muscles cause, the bruises and scrapes where I’ve hit something or knocked something down, and the wooziness nausea and anxiety this beast and the drugs cause. 



I eventually do recover. Able to move freely not in pain… Then another seizure strikes. Is it to remind me that my body isn’t actually mine anymore?  That it belongs to the beast of epilepsy? No because I will not give up! I will not let the beast take my body just yet…. I’ve too much I want to do. 

It’s taken part of my vision some of my teeth have been broken, It’s given me sprained ankles, dislocated shoulders, serious cuts and scars and that’s just physical. The beast still hasn’t broken me  yet. I will not give in. 

I’m really Tired and still feel unwell but I’m still positive too. 


I have epilepsy…. It does NOT have me 

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. 

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