My Label

My Label

my label

A medical bracelet or pendant is a little metal disc, that encloses information and labels the wearer. If you look  you will see i sometimes wear a pendant. I used to wear a bracelet but it got in the way alot and it was easier for people to see, they used to stare and back away and so now i wear a pendant so i can hide it under my        T-shirt if i feel the need. It’s not the “Allergic to dyhydrocodeine, Keppera and sodium valproate” that causes the strange response, its the “epilepsy”.    

When people see my label they usually say Oh you have somthing wrong with you dont you? And when they ask to see what it is all about and they see what it says they say “EWE you can swallow your toungue when you go off on one” or “you go crazy and stuff  with that don’t you?” . I really don’t know how to respond, because im not like some mad girl with a psyco disorder, and i’ts impossible to swallow your toungue, it’s just when you have a fit/ seizure there is a possibility of you biting it, and yes that has happened but its nothing crazy. Sometimes if its a bad fit it continues for ages and i get hurt as i fall and bite my toungue and so there can be blood and so i supose thats what scares people but its not contagious. 

Once when i was away from my friends and family in a shopping centre and ended up in a major epileptic fit/ seizure. The people around me didn’t know what was going on and understandably got scared. An ambulance was called and on arrival after regaining consciousness they told me i was having an epileptic fit/ seizure. I told them that i know that as i’ve had epilepsy for years. After much confusion, they contacted my mum who explained what was going on. When i got home we decided it was time to get a medi-alert, in case that happened again while i was on the road again (que the song!!!).

“Epilepsy can seem like the end of the world at times, especially when people dont see you for who you are deep down”. 

Jo Mumford

I think in a way i was lucky through high school really-  my peers got used to me after about a dozen seizures so by just about the first half term after i started having seizures again i was back in social stead and people no longer looked at me like i was a freek from out of space. That doesnt mean there were not some hard times.

As for pre school and primary school for my first round with epilepsy it wasn’t really me that had to deal with it, once again it was my peers and my teachers and mum whom took a severe beating with that time too but i think it went ok with only i few problems of what i could remember. 

This i think quite strange as, as time goes on you think the awareness of conditions around people would increase but in my life this seems to have gone backwards as i experienced more problems in the 2000’s than in the 1990’s. (but thats me all over- i have to be different).

I had some bad experiences when i was at the start of my seccond bout of epilepsy, things were not too good at home and it was not a place i could go for peace and quiet, i used to think of school as a sanctuary but since i started fitting peers were not good at this time and were either asking stupid questions (what i thought were stupid), just poking fun or even worse trying to provoke seizures as they found out was so easy with the aid of a laser pen, or a eraser, or any other object they could throw, scare or do something to me with!

Then i started to fight back not in a nasty way but before after a fit i would run out the class out the way of people so they couldnt poke fun, this time i tried a different approach. I just got up and sat back in my chair all a bit wobbly but i did it and i did get the questions and comments so i answered them – this was really difficult as any of you whom have epilepsy will know how you feel after a fit. My head was spinning i was seeing double or sometimes triple and peoples voices were distorted and it hurt like hell but i was just trying anything and knew for some reason i had to do it. So i continued and then the boy (naughtiest boy in school) came up to me and asked me questions:

Why do you keep doing that? ,Do you do it to get attention?, It it painful?, Have you ever swallowed your tongue?, and then what made my point correct, What is it?,

 I answered all his questions with the easyiest of answers:, Why do you keep doing that? Because there is a blip in my brain and the correct message doesnt get sent.

Do you do it to get attention? No, and its the wrong kind of attention i would want. 

It it painfull? Not during because im unconscious but after i get a headache

Have you ever swallowed your toungue? Its imposible to swallow you toungue so no, its a myth 

What is it? When the correct message does not get sent in the brain it causes a fit/seizure, you can get different types from this type i have to just sitting and staring. It depends where the blip is to what happens during a seizure.

After he said the most sweetest thing for him and said that he thought i coped really well and was brave. I was touched untill he added is it infectus – i just giggled and replied NO.

I often have been labeled by my condition and sometimes didn’t want to “label myself” by wearing medical jewellery. However I figured out that there more people know – the quicker it all gets handled and the less fuss there is about it all.

I wear the pendant because it makes things easier in an emergency, not because i want to advertise that i’m different. It has helped me several times having the label, and it’s saved alot of confusion in times when i’m unable to explain myself.   Unfortunatly there are still alot of people around who don’t understand Epilepsy and are scared of me  when they find out. I just ask that i be treated the same as anyone     else. And if there is an inseance where i need help, don’t back away when you read my label.