150 days..........

Well i am now on my 150th day without a seizure. I am most pleased lol.
This is the longest I have gone since being diagnosed and it feels good.

Sticking to my strict meds regime is the only time I am reminded of my condition so thats 2 short periods in each day otherwise I feel totally relaxed and free, dare I say normal? (If you have visited my Scotland the what blogspot you will realise I am nothing of the sort lol).

What I do have to work on tho is everyone around me. My wife, best friends and aquaintances are all still on edge. In fact it seems the longer I go without having a seizure the more worried they are about "When is it going to happen?" "Its been a while he is due one!" "He hasnt had one for ages the next one is going to be Huge!".

What do I have to do to be totally free for even one day? I know, and ill repeat this hundreds of times, they are just worried and concerned but we need to forget. We need to be able to relax, have fun and yes LIVE LIFE. Its really difficult when you are constantly aware of folks watching, waiting, mentally holding their breath for the big event!
So this is what Im going to do.............

October. Month of half term and local holidays.
I am packing my bags and heading off on a wee tour of Scotland. Staying in Bed and Breakfasts and doing my own thing in my own time.
I will enjoy the local bars and restaurants, I will get drunk, I will sleep late, I will be irresponsible,I will be on my own and I will be happy for 7 whole days.

Selfish? Maybe but after 20 years of being packed in cotton wool, watched and told not to do things just in case I think for 1 week I am entitled to be.

I would recommend everyone to do this at some point in their life. Epileptic or not. Obviously some of you may feel uneasy going it alone, take your best friend but dont take family. Head off, be irrisponsible, let your hair down and be free.
Let me know how you get on.

Have fun, enjoy and I'll see you soon.

xxx

its my birthday........

well another year has flown by. I am now in my twenty teens, thats over 33 lol.
I had a great time out after being kidnapped by friends and forced to have copious amounts of alcohol.

this leaads me to anotherr issue......

After 20 years of epilepsy, im gonna have to make up another phrase for it, I have encountered discrimination, insults and general ignorance for most of the time but the most annoying one is an attitude from some of my closest friends.
As the blog title suggests I have come to terms with having the Big E, that will do for now, and am determined to live my life to the full. It therefore annoys me somewhat that when I do go out for a wee vimto or seven there is always an underlying tension between some of my friends and I know they just cannot relax because they are too worried that, during the evening, I will have a seizure. Now, I know they are just worried about me and I know they are able too help if I do but in 20 years I have suffered maybe 5 seizures whilst out on the bevvy. Reason being is I usually have an incling in the morning when I wake if "today is going to be a bad day" so thertefore if I wake up with a doubt I seldom leave the house.
It is awful being watched and scrutinised whilst trying to have fun and kinda adds an uncomfortable edge to the proceedings.
I have assyred many of my friends that it is unlikely going to happen, explained my "bad days" feelings and spoke in lengths about how I understand their concerns and how it is ap[preciated but that it also ruins my night and probably theirs.
No avail.
I am at a loss now as to how I can stop them behaving manner but I am determinned not to stop me having fun!!!!!!

A certain work place....

After working in hotels and the Leisure and tourism industry for most of my life I deecide it was about time I left this trade and get a normal 9-5 job away from unsociable hours and stinking pubs.
I got a job in a very large call centr and after intense training was rather succesful at my job.
I exceeded all my sales targets being awarded sales person of the month 6 months in a row and was promoted to sales coach, more money less hours not manning the phones. Ideal.

When I first started the job my line manager arranged a risk assesment for me due to my epilepsy. I saw the company doctor and we went through any special requirements needed to do my job safely. This was a very positive response as I had never known an employer to go so out of the way to help.

My line managers and head of department were all given literature about epilepsy highlighting the problems that may incurr. Again very promising.

As I could have predicted I suffered a seizure, about 3 months into my new post, at home therefore had to take some time off.

After one seizure I am just about gauranteed to suffer two or three more within the next few days so had to be off for the week. As I would be absent for seven days or less I sent in a self certificate explaing why I would be absent (this is legal for the first week in Britain).

As stated in the literature given to my employers from their own medical officer I sleep for about twelve to fourteen hours after a seizure and as I lived alone friends and family are always very concerned but I, determined to be independant, didnt inform anyone.

When I returned to work I was given a back to work interview (becoming more and more popular with employers up here).
During this interview I was, to my astonishment, accused of taking unauthorised abscence and if I was to avoid given a written warning that I was to obtain a doctors certificate. A doctor can only issue a certificate if they treat you and as I know whats wrong and know that nothing can be done immediately I hardly ever have treatment for my usual seizures.
My department manager therefore issued a written warning although I had pointed out these facts and the fact that I and their own medic had prewarned that due to my condition, I hate saying condition makes it sound like a disease, this made no difference.
I then received a second written warning due to the fact that I did not personnally call in every day to update them and inform when I may be able to return to work. I reminded them that I sleep for hours on end and cannot possibly be expected to call in everyday at 6am, one hour before the begining of my shift, due to this problem. No avail.
Two written warnings for being epileptic.
A demotion because of the two written warnings.
Not authorised to take any more sick days for 6 months or instant dismissal.
AAAAAAArggggghhhhhhhh.

So much for positive action.

I took advice and tried to fight their decission. Citizens advice, lawyers and my Union but for some reason got nowhere fast! Frustration is not the word I would use.

Eventually I had to leave the job before I was pushed.

Just another thing we have to endure...and am sure it wont be the last time.

Shocking statistics.............

did you know there are 450,000 sufferers of Epilepsy in the UK alone.

that is 1 in every 131 people.

1000 people die of the condition every year.

You will probably come into contact with someone with Epilepsy sometime in your life so please treat us like human beings.

We know a seizure can be a very difficult and upsetting thing to see but please give us room, dont fuss and above all dont stand in a crowd and stare when we are trying to come round again. We are confused, dissorientated and its kinda frightening when there is a rather large crowd gawping at us and makes us feel like freaks!!

Thanks

Lets get educated.....

One of the biggest problems of being epileptic is the lack of awareness of the condition. Many a time has a stranger been injured due to acting upon the wsrong advice. People are still making the mistake of holding and restraining sufferers whilst they are having a seizure. This not only puts them in danger but also the sufferer. Some folks also stick fingers in your mouth to stop you choking on your tongue. The chance of this happening are actually very slim and all that may happen is we bite their fingers off.
The general population have never experienced someone have a seizure, Ive been a sufferer for 18 years and I still havent seen one(Im not there when I have one lol), and it is understandable that they either go into shock, panick, or just act on impulse which can put everyone invovled in danger.
Ignorance in the work place is always a bone of contention. Unless you have an amazingly understanding employer you will encounter huge problems, some of my experiences I will highlight at a later date.

These problems should be addressed and education and awareness should be a top prority and it is my goal to make this happen.
If you happen across this blog please let everyone know about it. Leave a comment about experiences or even to let me know you dont know much about seizures and our condition.

My first time..........

20 years ago. It was my eighteenth birthday and all was well in the world. My parents celebrated with my twin and I by giving us a long lie, we lived on a very busy farm, and we both got very expensive watches. I was emensly happy.
We all had a busy day, tending to the herd, the horses and generally trying to catch up on the duties missed in the morning and we did our best to do some of the work for the next day. Amazingly we finished at 4 pm.

A couple of hours later and our taxi arrived to take us to our birthday party. Finally legal to have a "bevvy". We had been to pubs before, got drunk a few times, but it seemed like a milestone and it felt great not to worry about being asked for id.

On arrival we were astonished at the amount of friends and family that had taken the time to wish us the best and of course get at the free buffet and the free drinks at the bar. We are all Scottish after all.

Our proud Dad made a small but heart warming speach about how we were now men and that he was very proud of both of us and then he took us to the bar to order drinks. (he insisted that he be the first to buy this very first pint in a pub (little did he know)).

With our cold pints of 80%, eighty shilling (a scottish ale to anyone not familiar), we both mingled and welcomed our guests. This was going to be a great night.

The Band had arrived and were playing their first song when an amazing waft of sweet strawberries filled my senses, the smell was so strong that I could not concentrate on anything else.I looked around for the source but could not find anything.

Not more than a minute after this sensation I experienced a very vague, outside myself feeling.
Everything and everyone around me were muted and blurred, like a bad reception on a television there was a constant "sssshhhh" noise. I felt a strange yet not all together unpleasant rush through my whole body and then I wasnt there, I was nowhere, no pain, no senses, no anything.

When I returned, from nowhere, everything was still and like a wierd dream. I recognised most of the people around me but couldnt place them. The surroundings I couldnt fathom at all and an overwhelming sense of fear and confusion made me panick and I tried to get up to run away from this strangeness. I had a sensation of being held down. The bodies around me seemed to be making inarticulate noises and I was petrified.

Slowly but surely I seemed to get back to myself. Everything started to come back into focus. Smells and noises started to make sense again and I realised I was in hospital but I didnt know why.

A doctor was rubbing my chest with her knuckle and piercing her thumb nail deep under my own thumb nail. Unless someone has done this too you, you will not believe how bloody painful this can be.

I shouted at her to "get the hell away from me!" and strangely this did not have the expected result. Instead of looking annoyed or surprised at my outburst she smiled and stroked my hair and spoke softly saying " hello gary. how are you feeling?" in a soothing and friendly manner.

I couldnt answer the questions about "who I am", "where I was", "what date it was" and the likes until nearly half an hour later when my senses returned fully.

This was my first seizure and the beggining of the rest of my life living with epilepsy.

You can still achieve.............

Well, a slightly more serious blog than my other one and I hope that this blog will be of interest to sufferers, family and friends and to generally everyone!

I intend to try and inspire by posting a journal of my life with epilepsy, highlighting the ups and downs, what YOU can achieve and maybe even have a little giggle at the same time.

Cheers Gary