January 6th 2009. 12:18pm to be precise.
That date is a date that stands out so prominently in my mind. This date is one I have repeated over and over since 2009. It’s a day that shall never be forgotten. This is a day that will stand out in everyones mind because every day since then my life has changed in some way.
Many people have dates that they hold with such regard don’t they? Birthdays, anniversary’s, Christmas are three to name a few. Big events such as those three usually consist of over indulging in foods that should be kept in the cupboard that you moan about eating the following day. You do however find that family come together for all three events and that’s the most important.
When epilepsy is involved belief is a quality it’s always best to have and one that stands up there with strength and adversity.
The belief that you will eventually get better, the belief to succeed and the belief to know that there’s always something round the corner that could help you one day. Whether it be a change in medication or a change in your thought process anything is better than nothing.
When it comes to your condition try your utmost to live your life the best way you possibly can. Some people go to work to take their mind of it, some are unbelievably academic and others are just the good guys wanting to catch that small break in life.
My words to you would be to find that inner confidence and show the world what you are made of.
You have nothing to be ashamed of. You should look at your condition like a star, you are the brightest star for what you have to overcome on a daily basis and that makes you special. Strength is something we have to find and I’d like to say after 20 years I am taking baby steps and am trying my hardest to find that strength.
I was a panicky person who constantly questioned whether I was making the right decisions even though I knew deep down that I didn’t need that assurance.
My mam was told once when I went to see the neurologist that I may never grow out of my fits however I would grow into my life. It was a statement I never thought about till now and it was a good one at that. My neurologist was to the point on that one. He made my mam see that there is light at the end of the tunnel. It might take me a little longer to get there than most that’s all.
In 2009 I had my condition for 16 years. When you have a condition for 16 years you get to a point where you adjust to the normalities of shaking, seizures, headaches, body aches and the fear of when another one will strike. Whether you be fitting 20 times a day of 20 times in a lifetime the worry will always be with you. You have a condition and you cannot run from that. You just have to try to accept it and realise that you cannot be enemies with your condition.
Every single time the topic of my condition was discussed the dreaded question would be asked “How long has it been since your last seizure?”
I would give an answer with the words “Touch wood” said immediately after to prevent the superstition of a fit happening right there on the spot.
What on earth is touching a wooden coffee table gonna do for my seizures? Are people for real when they say that? Is that a British thing? I don’t know. What I do know is if an attack wants to happen it sure as hell won’t let my “Touch wood” catchphrase get in the way of it.
The start of 2009 wasn’t the happiest of times. We had moved into a new home and were delighted with what our relationship was developing into. Typical woman “I” had a wedding to plan and we were in a good place. It was a shame that on that very January day we would be thrown into turmoil again.
My partner and I had a hard day doing absolutely nothing. The comedown of the christmas festivities were over and we were relaxing lying in front of the fire watching the Golden Compass. I wasn’t enjoying the film so I contemplated turning it over to put some post christmas TV on.
As usual I was eating my favourite rice pudding cropped up on a beanbag with my partner’s arms around me. It was so peaceful and calm. I could smell the scented candle in the background and it was bliss.
My partner and I were discussing a potential venue for our wedding then all of a sudden..
The groaning started and the face turned blue. Rice pudding was half in my mouth and my husband could see I was in distress. My hands were curled to my face and my body was jerking vigorously. This was not a pretty site. Shortly after the calm eventually came to me lying in the recovery position to cool off.
When I awoke I saw my partner head in hands shaking like a leaf.
The storm had returned and yet again our apologetic process started and the insecurity returned.
I looked in the mirror to find rice pudding down my new white shirt and blood all over my face from the tongue biting. I could barely walk I had shook so hard. I could barely string a sentence together however I knew I had to battle through to make sure my partner was ok. Sod my feelings he came first.
It was a traumatic experience for all however I could see my partner had a restless disposition and I knew he needed the cuddle this time not me. So I did that. I hugged him so tight and thanked him for being there. I thanked him for giving me the world and everything that was in it.
My partner was shocked. He assumed the seizures came when I was stressed however was surprised to see that this time it was completely the opposite. It was his turn to see what I saw that being the unknown. We were in no position to analyse because my epilepsy had made an appearance and now it was gone. It was time to start acting like adults and resume to adult life.
Straight after that seizure I was constantly questioning when the next one would arrive. I was counting the days.. then the weeks.. then the years. To this day I am still uneasy at the idea another could possibly come at any minute.
Many may ask why January 6th 2009 stands out more than others.. It would be that very date when I would have my last seizure. I am delighted to say that I haven’t had one since then four years on.
The seizures may have refrained from showing their face however I am still epileptic and my shakes showed that to me every other day. My seizures have gone for now like they did when I was a teenager.
The fits are hard to comprehend however it would be a matter of self acceptance that would prove the most difficult. How was I every going to be able to manage my feelings towards my condition? Could I shake off this fear? I didn’t know how to. Two months later a letter would arrive that got me thinking.
Let’s all throw a little therapy into the mix..