On The Slab

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Wednesday, May 31, 2006

There is time enough to be alone later…….more than enough….


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When I have a seizure, (I have photosensitive epilepsy), it feels like,… a massive electric shock that shuts my brain and body down for usually 6 or 7 hours while Im usually unconscious.

When I wake, those 6 or 7 hours later, it feels like somone has used my entire body, every single centimeter of it, as a punching bag.
Its an exhaustion thats impossible to explain really. Its like LITERALLY being so tired that moving a finger registers as exhausting.

Then, after an hour or so, that feeling finally begins to wear off.

It screws up my sleep-times for a few days, and I end up awake all night and asleep all day, but finally, when it settles down, I get a sense of relief that “ok, now, it might be another month before I have to go through that again! PHEW!”

I try not to think of how dangerous these grand-mal (tonic-clonic is the new term I believe), seizures actually are. But a part of me knows that Im very lucky that I have woken up after each one. Mostly without injury save for a few black eyes, cuts, nose poundings and cut tongues.
The drugs are working in the sense that Im not having one *every* day, but they do seem frequent enough for it to be very problematic to living a day to day life in any kinda normal way.

They stop me doing things, for myself, for others, for our life, and that, is the truly disabling part. They mean I let people down, I miss out on important things, I dont do the things I should when I was sposed to do them, and a million other things…

If I had to, I would be willing to have them, if I could schedule them.
Every time I have one, it means that that month is going to be a mess of forgetting, frustrating tired anxiety for me. As I try and try to not let it make me stay in bed for the month in absolute fear and terror of having another.

But, I’m lucky enough that I have people around me who care enough not to let me be that selfish. And thats what it would be to me, selfishness.
I live this life, with these people, for however long Im around thats whats important, being with the people I love….. “with“, it means alongside, if I dont live alongside my friends & familly, then Im hardly living with them imho.

So I have to keep fighting the fear of the next seizure I suppose, no matter how exhausting it is to do so.
The worst part of my seizures, isnt having the seizure, or the cuts, bruises, bangs, exhaustion, pain, etc…..

The worst part, is waiting for the next and remembering that yes, it is gonna come, whether I like it or not.

But until then, I want nothing more, than to be “with“,…. there is time enough to be without in the next life.
I want to make the ab-sol-ute most of every second I am here and I am conscious. I have to, because, if I dont, then why bother.

If I’m alone, whether its just sleeping weird hours, not keeping the same hours as every other normal person.
Or indeed, cowering under the duvet worrying about how long it will be before the next seizure.

It makes no difference, that is wasted precious time I could have spent being with the people I love.

My general health alone takes away enough of the time I want to spend with those I love as it is. So every second I can grab being with anyone I love, I must. And being here, going to bed at 7am, is me being selfish.

How ridiculous, probably incoherant, and stupid does that sound?

posted by Barry at 6:32 am  

7 Comments


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    Sounds perfectly sensible to me. Just keep in mind that you are also loved back, which means that there are people there to help you, people who feel it is a privilege to be able to help you through this. So let them. :)

    Comment by Paul — June 1, 2006 @ 3:08 pm


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    I remember the first time i saw my big bro having a seizure, i was terrified. it broke my heart to see him going through it.
    It is now such a normal part of our family life which im not sure is such a good thing. Sometimes i feel we are maybe a bit to casual about it but i think we are also protecting ourselves because when i sit and think about what my big brother and little sister go through, it kills me.
    Some people go through their whole lives afraid of everything and never feeling anything, never trully knowing how lucky they are, but i do.
    live life for today and enjoy every second of it, happy or sad! thats what my brother has taught me

    Comment by Elaine — June 2, 2006 @ 12:49 am


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    ))hug((

    b

    Comment by Barry — June 2, 2006 @ 11:29 pm


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    As someone with epilepsy also, I have been faced with the waiting. When the next one will come. I never know. Ive been seriously injuried because of them. I am fortunate enough to finally not have had a seizure for almost 2 years. I have stopped ‘waiting’ for them. Waiting wasnt the most terrifying part for me, thank goodness. I was on 3 different AEDs, then I took Keppra…amazing. They have stopped (almost, I still get myoclonic seizsures)…but to not have to wait in fear of the next one…that alone gives me strength to overcome myself. Being up at 7am isnt your fault, and no, thats not selfish.

    Comment by Fellow Eskimo — June 2, 2006 @ 11:54 pm


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    Eskimo,
    Yes, I am also on Keppra, combined with Lamictal and Rivotril.
    I lost the majority of my memories between the ages of 7-21 from being on Tegretol. (A drug to keep away from imho, it is extremely dangerous in the sense that once off it, you realise you will probably never get the majority of the memories of events while you were on it, back).
    I also get the myoclonic seizures every morning, usually goes as soon as (well, within 30 -40 mins) I take my pills tho’.

    Elaine,
    Between you an karen, I get all teary-eyed (in a GOOD way :) ) when I read your comments. So often I can just send a “virtual-hug” till I can find the words :)
    I love you both, so much. And I love that you both are taking part in this, its so amazing to see how you both feel. :)

    Huh, and they say ya cant ever really know somone online, we are all living proof of how wrong that can be eh. tis great imho! ;) :)

    b

    Comment by Barry — June 3, 2006 @ 10:11 pm


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    Barry.. thanks for posting what you have to live through. You are a brave and wonderful survivor. (((((((Barry))))) My work is with people who suffer seizures, but who are non-verbal, so they can’t express the things that you have.

    Take care Barry,

    David

    Comment by David — June 8, 2006 @ 10:27 am


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    Thank you for posting about these experiences.

    [I’m a new reader who happily found you through Noah’s Lark!]

    Comment by Nancy — June 8, 2006 @ 3:57 pm

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