Tag Archives: live

If i die young.

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Ok im not going to be depressing or dramatic here. Yes ive had some really down days… Life has been difficult but im ok. Things wont change but i have them all in my head into their little neat spaces instead of making my head muddled and a mess. 


I was asked to do another video by so many people. I didnt know where to start. I began with a song a jessie J number.
I then went away on holiday to see my best friend for a week,  I had such an amazing time. During that time though my world changed  that little bit more and epilepsy took a little bit more from me. I ended up in hospital as you know from my previous blogs and then when I came home i was again in hospital some more.
During this time I was told by drs that with the amount of seizures Im having and the amount of times im suffering from status epilepticus where I have repeated seizures without regaining consciousness and where my breathing changes and stops on occasions my future is not looking good. my future may hold brain damage and death if this continues. Luckily so far Ive escaped with only slight  blurry  left eye. I was also told my epilepsy is no longer limited to starting in my temporal and occipital lobe on the left but has now spread and is on both sides of my brain. Surgery is not a viable option as this would also cause brain damage.
Depressed, upset and at a turning part in my life I looked through some songs and found this one. (if i die young) It seemed to fit what i had just been told.
Im not being depressive about all of this but it is the harsh truth. So many people think epilepsy is just a condition where you take a pill and no more seizures …. If only it were that easy for us all.
Mothers and fathers have lost sons and daughters to epilepsy, Ive lost good friends. The truth is that epilepsy kills over 1000 people in the UK alone every year.

More awareness needs to be raised and this is my wish and goal to do so. I love life and love my friends and family who help me when im struggling. Im still the happy bubbly person I normally am… I do have my down days but most of the time im still happy and enjoying life.
This video is just to make you think a bit more about how precious life is… it is not to be taken for granted. 

I hope you like the video and it raises a few questions of your own.
Love you all guys. Please leave comments if you like. its nice to know who is reading this… I just get a counter thing telling me people are here otherwise which is a bit boring. Would be lovely to hear some of your stories too. 

Love you all and remember Just keep swimming. 



More Stress

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Today is monday. I find out that when mum was shouting about how ill she had been sitting worrying about me yesterday whilst I was at the concert she was actually out visiting a friend and shopping!

Not much I can say about that is it…. however all that guilt i was feeling and being upset was for nothing!. Im pretty cross that she obviously lied – If there is something I do not do is lie to her… I cant lie i always end up laughing infront the person anyway or giving the game away but to lie to me about that so I would feel guilty about going out? thats not right. 
Well We agreed a truths yesterday so Im not going to say anything – inside though im saddened. 
The arguments are starting up about band tonight now… if its not one thing its another. I went to go down to my studio but then got told no… when questioned i got the well i will have to come down there ! this was not the idea… I have a buzzer system for down there so why is that suddenly not useful? basically I cant do anything unless she is watching – i am going mad.

Anyway I went to band and despite a struggle I managed it.
I will say im suffering for it a bit today but I have also been to the dentist today to have my “real” tooth put in rather than the temporary ! (remember a few blogs before my holiday when I smashed tooth during seizure). anyway nice new shinny tooth now in. it was a bit of a trauma though so no surprising my head aches.

I will leave you with this poem. 

A friend like me. 


Please don’t be afraid of me 
I want to be your friend.
and if you get to know me
your rigid thoughts might bend
Thoughts that i am different
from others that you know.
I really am no different 
and this id like to show. 
I live and breathe and laugh and cry 
i love to play and learn .
I sometimes do things differently 
which can cause some concern.
You see, some say I’m special, 
i guess this much is true
but if you were to ask me 
i’d say your special too.
We’re all  little different
no two are just the same. 
Its really something wonderful 
there is no one to blame
When things don’t go perfectly 
and people get confused
they say things like “poor girl”
and other terms they use. 
Its ok if you look at me
and may not understand.
Its ok if you touch me
and even hold my hand
My like has many obsticals
More than the epilepsy that you know
but thats not what i dwell on
Im me, thats all and so….
I know that things may not
always go to plan you see
Sometimes i may fall down 
but I’m not just the beast you see
Please don’t be afraid of me
or tell me not to do 
the things that make me feel normal
and make life worth living so…
Please learn to be accepting
i want you just to see
how truly great and wonderful 
a friend like me can be.

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!).