Epilepsy and how to survive it

I have written before about the fact that I have epilepsy. I have had it since I was eight years old and will, according to my specialist, have to put up with it until the day I die.  It is one of those much misunderstood conditions that attract fear and misunderstanding.  During my youth the fact that  was 'different' did not help me and because I had no confidence I was an easy target for bullies. Although it has to be said that if I had taken the advice I was given by a friend and just ignored things, that would have all gone away. But as they say hindsight is always 20/20.

My first event happened after playing football. I went into the house of the lady I was staying with that day sat down and as far as I recall went to sleep. I woke up several hours later in the local hospital. That was the Saturday before Remembrance Sunday 1978. I spent the next week being poked and prodded and moved about the East Midlands whilst somebody tried to work out what the problem was. It happened again a couple of years later in the car park of the Emerald Isle club in Mansfield. The trigger this time was probably a video arcade game.

This time the doctors decided I had epilepsy and I was put on Epanutin tablets. I had difficulty swallowing them and so ended up on Epilim syrup. I then spent the next couple of years getting by having occasional attacks. I tend to have tonic clonic seizures. One morning I was at home and a doctor came on to Jimmy Young's Radio programme on Radio2 and began to talk about 'photosensitive epilepsy'. At last I now had a name for my condition. Research had shown that flickering lights, sunlight through the trees, tvs, computers could all trigger attacks. Since that day I have had to manage my lifestyle to accommodate these. Over time and with the improvement in technology I use many of these regularly. I still avoid strobe lighting and this has meant I have missed out on going to gigs by my favourite bands. I didn't go to discos and nightclubs.

After a couple of years I came off the medication and was OK apart from minor seizures 'petit mal'. The thing with epilepsy is that once you have it you are prone to have it again. Another of my triggers is stress and tiredness.

I was in the Lower VIth form and one Sunday night after watching, Cat Ballou (weird how you remember these things) I went to bed but I could not settle and became more and more agitated. An ambulance was called and I was taken to hospital. I had managed to stop one of my attacks but the energy that it had taken had completely exhausted me and I was off school for a week and was back on medication shortly after. I was given a combination of phenytoin and carbamazepine. It didn't stop the attacks and so the dose kept going up.

About this time two things happened which changed my life and also one article in a newspaper. The BBC had a science series called QED. One particular programme was about epilepsy. The first person was a Scottish guy who had epilepsy and was seen at a  swimming pool. He had learned to swim and had told nobody about his condition and had got away with it.  Was what he did the right thing? The answer can only be is that it worked for him. In these more litigious times, it is often safer to be honest. The DVLA once praised me for returning my driving licence following an attack.

The other thing was one of my teachers at school. He had asked my sister where I was following the incident above. When she told him he went away and wrote me a letter. He apologised to me for not spotting the signs earlier and he gave me some sound advice about how to handle the condition. He told me to be careful about who I told, but that it need not stop me achieving my ambitions. Oddly enough that is exactly what it did do, combined with a bit of 18 year old stubbornness but that is another story.

I took his advice. The drugs didn't work, in fact they made things worse and the dosage my doctors had me on nearly killed me. The article followed shortly afterwards and was by Rev Lionel Blue. He said that he treated epilepsy as an unwanted relative that comes around from time to time. All of these things together gave me a sense of perspective about my condition. When I was twenty two, I had my wisdom teeth removed and had an extra dose of my epilepsy medication and ended up flatlining, according to the patients around me in the ward.

Once you learn to embrace your condition, you can handle it. It has given me trouble, heartache and pain in my life. But it has also enhanced my phenomenal memory, taught me how to handle stress and pressure, given me immense powers of focus and concentration.

If you get good healthcare that is an advantage. During my twenty years in Huddersfield I had excellent care from the doctors and staff at the University Health Centre. In other parts of the country the care has been less good. I know that I will have to take sodium valproate for the rest of my life. I know that there is no guarantee that I won't have another fit. I have learned to take each day and each moment as it comes and it is hard work to do that.

Some tips I picked up along the way:-
1. Reduce your caffeine intake - I was always lucky enough to get an aura before my seizures. Unfortunately the buzz from caffeine is a similar sensation and I have had to leave shopping at the till to get home just in case.
2. Alcohol - I don't drink, which is irritating, but I was never a heavy drinker because of the way I had been raised. In the end it isn't worth it.
3. Drugs - what is the point. If you are going to spend your life on the type of drugs you have to take for epilepsy, just what is the bloody point of destroying your mind and body with that sort of crap.
4. Be bloody minded. - People will tell you that you won't be able to do all sorts of things because of your epilepsy. Don't believe them. Find a way to achieve your dreams. Everything that I wanted to try and achieve I have tried. I may not be a high powered lawyer but then I'm not prepared to take the stress levels required to succeed in that profession
5. Find love. Sounds simple I know. My wife learned to put up with many things. Until she met me she had never been in an ambulance. The benefit is that since we have been together my health has stabilised. It took a few months initially but I have, touch wood, not had any problems for 16 years.
6. Believe in something. - This is a personal one. I am not a religious fanatics and every religion has its problems but the fact that I have some belief, cobbled together over many years, helps me.

Lastly learn to recognise and use the benefits that your condition gives you. If you treat it like a burden it will become one. I know many epileptics and have given talks to doctors about how I cope with it. The thing is that it is different for all of us. Epilepsy is a broad 'church' and there are many types of the condition. You just need to find your route through it. You may have one episode and never have another. You may, like me, have it until you shuffle off this mortal coil. Don't ever let it dominate you. Control it and live your life. Embrace your life and make it work for you.

Ten pin bowling with the brood

We are currently playing host to my son's best friend from Huddersfield, Matty.  They have known each other since the first day of primary school and are still best friends.  They share an interest in rugby and until April of this year they played for the same team, Huddersfield RUFC in the u12s.   They were never in the same class at school and then went to different secondary schools. Then when we moved to Worksop this year Tom left the area completely. They have remained friends and through the miracles of texting and Skype they have kept in touch. They rib each other about how bad their respective rugby league teams are doing.  The friendship is strong.

When it was arranged that Matty was coming to stay with us I was keen that they didn't spend all their time sitting on laptops playing Football Manager. This morning we went over to the ten pin bowling alley in Mansfield. The drive through the fog was an experience  but we arrived unscathed.

We purchased 2 games of bowling and drinks and set about playing. The first game was not the highest scoring game ever seen. Matty was OK, Tom was dreadful and Jenni was lucky. I started slowly and it was a close run thing until the last round. Matty was ahead after his final bowl and then Tom piped 'You've lost dad because you won't get a strike or a spare in this round!' On my performance at that stage this would appear to have been a fairly good judgment. However, it overlooked a number of factors. Of the four of us I was the most consistent. I had the best technique of the four of us and I wasn't using the bumpers like the others. I promptly hit the spare with the last bowl and then with the bonus throw overtook Matty. The atmosphere was not good.

Matty complained that as the guest I should have let him win. I advised him that winning that way is the worst kind of winning. If he was going to wn then he should do it on his merits. I went to collect the drinks and whilst I was away the lads insisted that Jenni should aim her own ramp as she had beaten Tom in the first game.  The game started with Jenni bringing up the rear after the first few rounds. Matty was again out in front but Tom was starting to find technique, or what passed for it in his case. At the start of round three Matty and Tom then announced you have no chance of winning this game as you are so far behind.

For two supposedly intelligent kids they really can be dumb on a grand scale. I have epilepsy and all my life people have been telling me that I can't or shouldn't do things. Now some of these things I take heed of. I don't drink, I don't take drugs and I avoid flashing lights wherever possible. These changes have been necessary for me to manage my condition effectively and this I have done for the last sixteen years. However, the thing with epilepsy is that like most conditions there are compensations. I have immense powers of concentration and focus. My short term memory is going a bit but my long term memory is phenomenal. I am available for pub quiz teams at reasonable rates. The other thing the condition gives me is the ability and determination to prove people wrong.

I have been told the following ( not all in relation to epilepsy):-

1. In all likelihood you will never drive - I am a reasonably good driver and have held a licence for thirteen years
2. I was never allowed to swim at school  - I learned to swim in my 30s and am OK within my depth
3. Some people suggested that I probably wouldn't marry and have kids because they wouldn't be able to cope - I am very happily married and have two wonderful kids
4. You won't ever get a job in the legal profession aged 18 with no qualifications - I got one within a couple of weeks and held it for four years and am partly qualified as a lawyer.
5. You will never be able to give up chocolate for a year - My son said this to me, I gave it up for a year. So you would have thought he would have learned not to make challenges to me by now.

So taking all of the above into consideration a couple of kids telling me I am not going to win 3 rounds into a game is hardly going to phase me. 

I quickly got into my stride with 5 strikes and and a spare in the next 6 rounds. My score at the end was double their combined scores. This was after not having bowled for 3 years. I am planning on taking them for a round of golf later this week at a golf course which I used to play several times a week and which I played a couple of years ago.  I am no great shakes as a golfer as my friends Emmett and Mark would testify but I would guess that I will comfortably beat these two.

Living life to the full

At Mass this morning our priest gave a sermon about how mankind spends its time trying to accumulate wealth power and possessions in a futile attempt to stave off the ultimate outcome of this existence. He remarked on how people fear death. This particular priest is an excellent preacher, he used to be a teacher, and is usually right most of the time with his observations of the human condition.

Whenever, I listen to his sermons I always come away thinking. I am very sanguine about death this is because I have a condition that can at a moment's notice cause my death. The condition of itself is no more fatal than actually being alive, which is 100% fatal in all cases unless I haven't been paying attention recently. How has this knowledge affected my life? Do I live each moment as if it's my last?

I have to admit that I have not managed to crack the second question yet and am still searching for something. My vices are music, films and books. It might have been nice to give sex, drugs and rock n roll a proper go but when I was still young enough to appreciate them my condition held me back. I don't do drugs because I have to take them every day until the day I die. I was allowed to sample alcohol under controlled conditions and along with my medication never saw the point of getting drunk. As for rock n roll I had a passing flirtation with bass guitar more as an academic exercise than as a real attempt to play seriously.

The turning points that helped me control my condition were twofold. Firstly on a BBC science program called QED which showed a fellow sufferer who refused to let his condition master him or let anybody else tell him how he should live his life because of it. The Rev Lionel Blue described the condition as like an evil cousin who visits occasionally and causes havoc. The second turning point was a teacher at my secondary school who on discovering my condition, which he shared, advised me how to deal with it.

The condition is epilepsy and you can live a normal life with it. As long as you take reasonable steps there is no reason to let it hold you back.

Back to the point of the post. If you can live your life to the fullest and being a Catholic does not have to mean living a diminished life in search of the eternal goal that we believe in. My advice to one and all is embrace life as you only get one go at it. Death is merely part of the process. The best we can hope for is that the death is peaceful or has purpose. To my friend who is having problems at the moment all I say to you is do not go quietly into that good night.

TTFN