Tag Archives: freedom

More Stress

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.

It came tumbling down

I had just got the ok to take my driving test and it was booked for a week thursday. I was ecstatic. work was great life was great. Yet i had a niggling feeling. I hadn’t been feeling well the last few days. I was tired It was the wrong time of the month and my headaches becoming unbearable again…. i had a odd feeling but couldn’t describe it to myself so talking to a dr i thought was useless.
I was working at the main hospital and the local one so id my own patient groups in both and flitted easily too and throw by bus yet i craved the car for the ease.
I got to work at 8:30 and sat in the office doing a few bits of paperwork before heading off to the ward. It was a hot summer day and the hospital was stuffy… i gulped down some pills and a glass of water and grabbed my list hoping the pills would kick in quick.
I done a few patients on my own and then met my friend and colleague to do a double patient. our supervisor was there and wanted to check on the patient too as it had been a while since she was there… i took a step back and let her take over .
the room went blurry and i woke up on the floor attached to a sats and bp monitor. I had had a fit.
The world ended again
I lay on the floor and when my fellow work colleagues stopped to talk i explained that i was ok i will be ok i just need to rest. I went home and when i returned to work the next day i was told i was not to be working with my supervisor anymore. This was because of the seizure and she disagreed with me working there at all. I fought for 3 months and finally won over and had my job back and a apology the stress was not needed though my seizures were again controlled and i had my job but i was so close to my dark days it scared me… I made in my head promise to be happy and to think of disney and sparkles for future.

Prom, Ignorance & new beginnings

Or not……..
Prom was great. I had a long dress, a shawl and 2 men one on each arm a stretched limo and friends … i was a lucky girl. The night was great and i danced for an hour until the atmosphere changed…. I started to feel dizzy and hot and I went and stood outside the hall by the office door…. The disco was too much and i had nearly been captured by the beast again. My prom night ruined for me. I dozed on the big comfy chairs for an hour  in my ball gown determined not to go home or to worry mum by calling her out. I woke and went back to the party. When the prom finished a group of us were due to go to an after party…. We climbed over the school gates as they were closed at the end of the school we wanted to leave and i struggled back to a friends house. Here we stayed up for a while (everyone else drinking, me not as i knew it wouldn’t end well) and had a laugh. I still felt i had a good eve. I went home at 1 am and didn’t wake up till11 the next morning.



********************

6th form was difficult. My work was suffering as i was still having problems  in class due to the absence seizures… if i concentrated at the board for too long i would have a grand mall as the flickering light was send me into oblivion!


I ended 6th form with my languages (english, french and the spanish id been doing at night school) and my sciences. I dropped history as i just couldn’t fill my brain with all the dates anymore. sad but resigned to the fact i would go back to night school and do it there. The second year i went to my first class. As i walked in the new drama teacher who was also head of year pulled me over. She said “now you don’t have any seizures in my class, I don’t have time for it” I was astonished. what was she on about… how ? what?  i was stunned. I took a deep breath and said in no certain terms “if i could turn a switch mrs James, don’t you think i would choose not to have these at all?, She looked. I turned and walked out… i didn’t look back and never went back to school again. I felt discusted and betrayed but it may have been the best thing of my life to happen. 

As soon as i left i started to panic. Tears streamed down my face as i walked home ( i wasn’t supoeesto be out on my own but i needed to breathe and i knew mum was at work) it was a long way and took 3 hours but by th time i got home mum was there and i had cleared my mind. I told her what happened and she freaked. She wanted to go to the school immediately but i stopped her and said i would work it out for myself.
That i did.
That eve i searched the web and ploughed the job sites. Id filled in so many forms i couldn’t remember what for.
but i felt relaxed that night as i went to bed. knowing i had a new life to start seemed quite calming. Despite not having a clue where that new life would take me, or when it would start.

The next morning i woke to the phone ringing. i reached out to the phone and a lady spoke “is that Joanne *******”
oh no i thought its the school with more issues! yes i said… reservedly. She continued to speak but i couldn’t tell you now what she said. at the end of the call she said she would call me back. I put the phone down and stood back in amazement. mum came in to see who it was…. Ive just got a job i said.
i sat down with mum and told her about the phone call……. i had just been enrolled onto a NHS apprenticeship in Physiotherapy. I would go to college 2 days a week while working at the local hospital. WOW i was happy.
I didn’t know much about physiotherapy so i googled it and found the basics… looks good i though plus i will probably get fit at the same time!
my first day was scary. i went to canterbury college and was enrolled. i filled out forms showed certificates and yes got questioned about my epilepsy which at the moment was behaving itself a little better… i’d not had a seizure in a month. i had a occupational health assessment and it was cleared as long as i didn’t work nights. this was fine as nights were not required at a cottage hospital.
I was into the job  a whole year and id only had seizures while asleep. the medication was great. I applied for my driving licence and when it came through the post it was like my life had changed again. Freedom was on the horizon.

Dancing Queen V’s Karate Kid

sorry couldn’t resist the post title! 

It seemed that the next few years flew by.  school life was back on track and social life too. Yes there were restrictions but I still had fun and my childhood was pretty good really! Family life was difficult at times but who’s wasn’t right !So I went throughout the next two years pretty steadily with regular hospital check ups and changes to medication level as I grew. When I was 9  I was taken ill again. It had happened over a few weeks but I ended up again in hospital but this time not for too long.I had appointments to go back for tests which i did. The tests were quite nasty and now at age 9 i had learnt that hospital were not good nice places to be as i always came out with holes in me somewhere and hurting for the things they did. I did always had some soft disney toy or other that was great for distraction. I didn’t care that most kids thought 9 was too old for toys such as disney and soft bears… i embraced the lot disney and sparkles all the way. There were lots of tests that they done on this round of my MOT.  The one i remember vividy was one that provoked my seizures. It was an E.E.G but they made me stop all my medication. Then when i was all hooked up they flashed a light in my eyes…. i can’t remember anything beyond that point !Becoming older I understood more and more which was not necessarily a good thing! When the results of the tests came back it was revealed that my epilepsy was generalised but originated from the temporal lobe. There were lots of medication available at that point so i was put on some different pills and life carried on.After 4 weeks i was the liveliest i’d been in years… we didn’t realise it at the time but the previous medications had obviously made me more tired than i should have been. I was happy real happy. I had always loved dancing and i’d joined the local dance school at 6, but i was now dancing better and enjoying it more. Age 10 i also joined the local karate class. Here i met lots of new friends and thrived at being a little karate kid. I zoomed through the first grades and was taken to all the local competitions. age 11 i went to regionals and won! the next 6 months were run up for the semi finals. I loved the lot and had a fab day despite getting up at 4 am! i came 2nd in the combat sparing and 1st in kata. Mum and my instructor could not have been happier as we were not expecting it after getting up so early and the long journey ! My next appointment at the hospital i proudly put on dr terri’s desk my trophy and medal with a photo of me and the rest of the team. Dr terri replaced the old regional phot with the new semi final photo and was also thrilled. No medication change was needed and once again life continued on a upward roller coaster.I was full throttle in with my karate and was loving every minute of it… I was going to competitions every week and even went to a big competition in London, this one didn’t go too well as i was 3 times smaller than my opponent and ended up in the ambulance corner where i got patched up ready to do my next competition entry: kata. Despite the cuts and bruises from the fighting i came 3rd in the kata class so it was worth going especially as it was such a huge competition.My love at the moment was dancing. id only recently started competing but was doing ok. In fact I had a dancing partner, he was 2 years older than me but we were a good match. We both done really well with our routine and thrived in rock and roll. Competed in many competitions School was also great. Apart from seizures when I was poorly with cold, flu or had an infection. Anyway school went well and from 5th year on I had no more seizures… the new medication had worked ! I was delighted as were my family. I got to do things I hadn’t in a while and I was slowly weaned off the tablets that I had been taking for over 6 years!. Life was great, and I going off with my friends on our own…I was getting a bit of independence. A happy ending?