Monthly Archives: March 2013

Epilepsy

My Fiance has epilepsy. I spend alot of time researching and learning about the condition in an effort to better his life a little. This is a serious post, In “average person”, non-specialist terms Epilepsy is a condition that effects a particular part of the brain (this is different for everyone) the seizure is the result of a misfire in this area of the brain and can present in the form of a partial seizure (or Petit Mal) or a Tonic Clonic seizure (otherwise known as a grand Mal seizure). Usually a person will experience some sort or Aura or warning sign that a seizure is on its way. Jake’s Auras are; muddled up words when he is speaking, he gets really clumsy and sometimes falls and trips over, his essential tremor (familial tremor mainly in his hands) becomes intensified and he generally just feels “off” so to speak, he complains about not feeling 100% and struggles to get over his breath as if he is having an anxiety attack. His anxiety is usually worse leading up to a fit or seizure. Luckily for us, Jake tends to only have his turns in bed, this is since he has been on his AED’s (Anti Epileptic Drugs).

Epilepsy is beginning to really effect the quality of Jakes life, and our life as a family. He is always waiting for the next fit which would be a horrible way to feel all the time. He misses out on some of the taken for granted aspects of life and parent hood for example, He inst allowed to drive. One of the Most liberating things in life is driving in the car, music cranked full blast, singing your heart out (horribly out of tune) to whatever is on. Jakey misses out on this feeling. He isn’t able to bath with our 3 month old bub without supervision, I always have to hover even though I know it makes him feel like an inadequate parent and I hate it. He cant have a beer with his mates (alcohol  is a really big trigger for him, this differs for everyone) and being 23 having a beer is a big social occasion. So it is really hard, all of these seemingly insignificant situations to those of us who don’t have to think about it are some of the most missed things in the life of an epileptic.

I would love to focus on the positive, and I certainly don’t point these things out to Jake (even though I know he thinks about it) , I want him to feel normal and appreciate his life because while he does have epilepsy its not like he doesn’t have his health.

so we have come to a point where we are considering if it is better to go ahead and have brain surgery while Jake is still so young so he can enjoy his life stress free. The reason we are considering this option even though he has only had epilepsy for just over a year is because he also has a essential tremor, his epilepsy meds make his tremor so much worse (to the point where he can’t eat or drink properly) and his medications also make him feel anxious, sick and exhausted. Not to mention the type of epilepsy Jake has (left temporal lobe) is one that is very difficult to treat and get under control with medication and it will continually worsen as he ages.

We were just watching tele and one of the NRL greats Wally Lewis came on and was talking about his personal experience with epilepsy. He had the operation in 06 and has never looked back. it  is a tremendously scary thing to contemplate and we need more information yet but i think its one we may just be going ahead with…

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yep.

Did I just post a selfie?

Yes, yes I did.

That s what my Blogging adventure has come to. And I really do hate to point the finger, especially at a vulnerable infant, however I will, because IT IS ALL HIS FAULT. Master Maxwell is what i should have named him.
He Literally runs the household, he wont sleep. I guess when I say he wont sleep, he does actually sleep it just takes so fucking long to get him down. Also he is having his 12 week growth spurt at the moment so i am feeding him more than ever and expressing like mad. It is an absolutely ridiculous understatement to say that i am tired. I am a walking, fucking hairy green eyed, zombie.
My neighbor popped in yesterday to ask about our electricity bill (long story) For some reason, unknown to me I answered the door. Why the hell would i answer the door. Half naked (more than half), makeup-LESS, UN-showered (cant say it was the day before that I showered either) and with my house looking comparable to the hoarder’s house up the road i just OPENED THE DOOR. No big deal. eugh Idiot.
Anyway im finished venting and self loathing for now. So i opened the door. and went one step further and invited her in… where was i going with this?

Iv’e lost it…?

nope, its gone.

a day in the life of a new mum, Surprise!!

If you have got to this part of this post i must apologize, its completely boring reading.

I think I took this picture to prove that there is the occasional day when i can apply a bit of Makeup and put clothing on. Yep goal achieved. Well done Jordan.
I need a coffee or a wine.

Things I now know (with a little help from good old hindsight) that would have done me well to know before.

Life is full of opportunities to learn something new isn’t it? Everyday… is how often I have an; epiphany, revelation or moment of clarity (or multiple). Up there with the most frustrating things is the feeling that immediately follows an embarrassing moment. Not quite shame, more like ‘aghhh as if I just said that.. what a fucking idiot.’ You know the one. These moments always lead me (eventually) to a revelation of some sort (I clearly over analyze everything, but hey Im pretty sure that over analyzing is a condition of the human experience)

Anyway being extremely prone to far to many of these moments (Im sure far more than most anyway) I have resolved to take note each time I manage to jump (and clear) an internal hurdle, whether that be a big life perspective altering hurdle or an insignificant and irrelevant mind chatter/ramble, argument with myself type hurdle. My list is far more extensive than I imagined it would be (and still growing) at this rate I will have to do a new one each month… maybe that would throw some consistency into my brief and chaotic blog hmmm (epiphany #27 for the day) ‘sheeeiiittt’ what have I started!? The idea has certainly snow-balled. Lets see where this takes me.

Okay here is my list to date (I started note-taking yesterday, alarming hey. I cant believe I hadn’t had this brill idea before now.)

In order of when they hit me as I am not one for alphabetizing. (definitely not in order of relevance or importance either)

Little Revelations and Life altering epiphanies

#1 Life is one big revelation
This is an important one. We tackle self doubt and self-conscious thoughts all to regularly. It is an undeniable fact that the world is going to continue spinning regardless of weather or not we are ‘All Aboard’. Apparently mindfulness can help with this and this guy has a pretty insightful blog on staying in the present yadayada

#2 Babies cry

#3 And ITS NOT MY FAULT (well not always my fault)
when I take a little to long to get my boosie out, or change his nappy (because its choccablock full) those times are my fault but the rest are not and I can deal with that.

#4 Dying cant be as bad as:
Mastitis is.
When your baby is screaming so much he sweats and you cant figure out why. (I will interject, my bub is about as settled and placid as a budgie on crack).
The nerve racking fear of falling down he stairs holding our bub every time you walk down them (at least 20 times a day)
Feeling like a failure
The constant and controlling ‘Guilty’ that accompanies motherhood
tbc…

#5 Dinner isn’t always going to be food.
New-Mum syndrome.

#6 New-Mum syndrone is a thing.
I may have put a name to it but you all know what it is… Its nearing dusk and you are yet to shower or in-fact change out of your Pj’s at all.
you think its okay to done a messy bun and wear long socks with all shoes (thongs included) it is okay
smelling like boob milk and poo becomes normal (and even pleasent in comparison to the BO you conjure up somedays)
‘doing the washing’ means throwing an armful of dirty everythings into the front loader, pressing start and then leaving them to dry in a nice neat heap in the basket.
Just like ‘doing the dishes’ now means ignoring the systematic stacking slots of the dishwasher when sliding anything on the bench into the drawers and squirting dishwashing liquid (your probably out of tablets) all over before closing and pressing start.
also tbc…

#6 Babies have the ability to awake every time mum sits down to begin her Uni work (or a new post on her blog) but will remain asleep when she is idly watching ‘Days of Our Lives’ repeats

#7 “Life is hard”… in comparison toooooo?

More to come…