Epilepsy, fatherhood and fatigue, yet the wheels didn’t fall off.

My daughter is 16 months old now an we have settled into a routine, we have what I can only assume is a normal home life. I’m pretty confident that it is.

When she was born, she arrived with a thump. Having been battered and bruised on the way out; she took a while to get better and spent some time in hospital. Now she is a happy 16 month old who loves her George Pig toy. If I didn’t have pictures to prove it, nobody would know that she went through the mill. My wife took a pounding too, she never uttered a moan or complaint. She is a legend, an absolute hero.

Before the baby was born I was concerned about having seizures around my daughter. I just didn’t want to get in the way and need help, when I was meant to be the help. However as soon as she was born something rather strange happened, and to this day I am unable to explain it.

From the day of her birth I had a 6 week period without so much as an aura, and even now I do not have seizures in any way like I used to. In the first 3 months my sleep was interrupted and wakeful, this is traditionally a recipe for disaster. But no. I remained seizure free. The lack of seizures was unnerving and I waited for an absolute monster to come along and rain on my parade. I am even now at a loss as to what caused this, but maybe it was just that my sleep was so jiggled and disjointed that my brain didn’t know what to do. So it did nothing. I accepted this with open arms. This was the longest period of grace that I have ever had from seizures since I was about 7 years old. The gratitude that I have for this is immeasurable.

But all good things come to an end. Two days after my daughter started to sleep through the night, my period of grace was brought to an abrupt  but quite polite end.

Oddly, when they came back I felt more normal than I had when I wasn’t having seizures. During those eight weeks I felt as if I had to look over my shoulder, as epilepsy was taunting me just waiting to pounce. On its return, the relief was considerable, yet so was the disappointment. Bizarrely the fact remained that I had missed my epilepsy. Is this normal?

I feel quite guilty for missing the seizures. I know people would give their right arms to be seizure free. To be honest I would too. Although I don’t think that I would be able to trust the seizure silence. At least now I know where I am with it, its like an old friend that you just can’t shake off. You know, the one that comes out on a night out and “forgets his wallet”. Yet if he wasn’t there, you’d wonder where he was and would lend him some money in order to get him to go to the pub.

Maybe it is just me.

With the help of a new AED, rest and an rejection of stress; my (rather brutal) partial seizures started to get in to line. At the moment they are much kinder, far less frequent, intense and more predictable than ever. Epilepsy certainly does not stop me from completing Dad-ly duties. If anything, my experiences in life have made me focus and made me a better Dad. For that, I am quietly grateful.  🙂

Many Thanks for reading ,

Ant

 

 

Hiding a seizure is definitely more fun than just letting it take over!

Being a very well medicated person with epilepsy, I have always challenged myself (knowing that I always lose) to power through any partial seizure that dares attempt to inconvenience me. I have been on the end of various differing outcomes; for example I regularly stand having discussions with colleagues in work whilst they are totally aware that the left side of my body has switched off, and that I could fall like a felled redwood at any second. There is a coping strategy for this and many other scenarios. Quite often I can feign full lucidity for the duration of the partial, leaving them totally unaware of the battle between chaos and order that is silently dominating every movement.

I must admit, the people I work with are getting wise to my “fool proof strategies” to stay (more or less) upright. They immediately notice me stood bearing the weight on my right leg barely moving, whilst I am unsure of what is going on with my left hand side. It could be on fire and I would plough on as if all was fine an dandy.   At home my other half simply has to look into my eyes, then wait for me to  ask (rather oddly)if she is okay. For a split second I assume that she is also in a world of absent spacial awareness and a non responsive left hand side of the body. Apparently it is an easy mistake for me to make.

Phone calls are a big challenge, they are arguably the hardest of all. The main nemesis being the ever present office swivel chair.

I can not overstate the difficulty of holding a swivel chair in an forward facing position when the entire of your left hand side has lost its muscle tone, causing the chair to turn. This is yes, hilarious, but it is also made even more fiendishly difficult when coupled with the lack of spacial awareness that occurs with it. I have toppled chairs in the office before now, due to my insistence on holding a phone call whilst the chair is in a uncontrolled turn to the left. It resulted in me tripping on my own leg, getting tangled, then as a result pulling myself off the chair; only to finish the call as a mangled heap in the floor. It was far from a convincing outing. I couldn’t even remember what the phone call was about.

However there have been some genuine wins.

It was the summer, the lads picked me up with the taxi and we headed to the pub. As we arrived I was getting the smallest hints that a partial could be happening soon. As a result I sauntered over to the bar and assumed my position, holding my weight on my right hand side poised and ready for a seizure that, in all honesty I expected it to be a no show. So as time went on with no seizure, my confidence grew and I placed some weight on both feet but held my beer in my ever steadfast right hand. This was my mistake.

Moments later the room was upside down and my left side was no longer there, it was only a matter of time before it gave way all together. So as panic set in I surveyed my options.

1. Return to my right side leaning strategy and hold on for the best- the outcome would be unpredictable
2. Walk the 5 feet to the nearest chair- this distance may as well be 5 miles as my leg was a complete waste of tissue at that time
3. Sit on the floor- the floor was sticky, it was the smelliest but least risky of the options

I boldly chose option 1.

I stood talking with my friend, mostly able to look at him instead of the room that was flying around. Then it started to happen I began to tip. I didn’t notice initially as my perception of movements wasn’t working. I only noticed what was happening when I looked down at my pint. I became transfixed by it. As I was falling the beer was creeping up to the lid of the glass. So I made what consider an admirable decision. I was going to save the pint.

I focussed all my energy on looking at the beer and held it level all the way to the floor, I hit the floor with some force but I was numb, thankfully. Then holding my pint in the air like a toppled He Man I defiantly saved every drop of my pint. I laughed as my genuinely concerned and confused friends looked at me an my bizarre demonstration of where my priorities lay. Job done.

In hindsight, option 3 every time.

So for me the fact that I am certain that these partials will follow me forever, I have tasked myself with blindly ploughing on and finding a way to make sure there is a way to just get on with it. I am happy and very lucky that I have this available to, most people aren’t.

 

Thanks for reading. Drop me a message bellow if you like, I’ll get back to you ASAP.

Cheers,

Anthony