Peek-a-boo
It sort of is the way of things in my personal health world.
Been a bit of a choppy year as the epilepsy is playing 'hide and seek' as it does every few years.
Oh well.
A new medication adjustment. Yet again.
A juggling switch of the when time of day or night I take the same amounts I am currently on.
A new medicine was added on in the fall to make it 3 medicines I take each day.
The target now is to try to seriously get the nocturnal time and early morning under control. Juvenile Myoclonic Epilepsy happens at night while sleeping and early morning upon wakening....for the full blown big seizures.
It been going on too long...the warning signs.
I stayed home/called in sick...May 17th....felt terribly ill like I'd had a full blown seizure during the night in bed. But also had felt REALLY LOUSY with seizure symptomology for days.....
Doctor basically...is getting on top of it now before it goes worse to 'there' based on the problems I been having getting progressively worse.
Ya think to yourself is it all in your head???? or it might be just emotional or stress or your own paranoia playing tricks on you....maybe ya just clumsy...
BUT...I am not prone to clumsiness.
But then...your very serious not great bed-side manner epileptologist looks at you as you tell him the things while you disallow aloud maybe ya just stressed and validates it is a real problem getting worse enough to warrant adjustments without saying it to you in words. Starts looking back at histories asks me to re-affirm when my last 'big' seizure was....July 2009....I pull out my seizure journal....he starts muttering details....taking new notes.... Endless writing....he gives me a paper pad...
'Show Me HOW you are dropping things...drop the pad the way it happens with the dishes etc....'
I've never had anybody ask me to SHOW it.
Then he asks me to pull out my medicine and show him the pills to identify the particular type of it I am taking....continues writing...dosage discussion....hours if I can tell him....the shaking seems to go on for. At what hour did the seizure in 2009 happen? Based on that when had I woken up....and ...taken my medicine??? etc etc etc...
And then there was the March bloodwork done. He furrowed his brow and commented....
At that moment I took it seriously as him showing me without saying it is real. There is a problem.
And he wants to prevent it from being a bigger one.
The 'control' needs to be gotten to again.
All the year it been a bit iffy and the dropping of dishes while doing them...books at school...a hairbrush....a shampoo bottle....a large carving knife...missing my foot to clank to the floor. Multiple times all of it over the months since who the hell knows? New Years time I think....maybe even during the Fall.
Hell....New Year's Weekend I was alone the entire weekend....and my hands were....yeah......tried to make something I liked for dinner to make it seem like a special time since I was by myself......all I wanted was a comforting meal....
Dropped a knife...in the way it shows it warning me....gave up...just left it....better not to to touch til later....so I shut the lights. The TV. stayed in bed...lived in the dark that weekend.....
Got lucky. The worst as far as I could tell....the arms the hands the discomfort....and nothing more. An ounce of help towards prevention....stay quiet stay safe does wonders if it works and no clues the next day of worse in my sleep and so THAT was good.
God Bless my family as they spent time on the phone with me New Year's Weekend, as I called to help myself feel better not knowing I was alone...they would've come immediately and I SO don't need that.
Problem is....my kind of seizures happen at night while asleep or in early hours of dawn/morning upon awakening and onward for at least 3hrs at the most likely time.
SO...
I believe in god with all my heart because countless times I should've been injured or dead when I think of all the ways I have gone down.
I CAN take care of myself. I do always.
But it doesn't make it 'fun' and it ain't easy.
And people with seizures as a general rule try not to live alone.
Bad practice.
AND I think when I go to Lake George this July 4th week coming up....
I will stay out of the water.
Just to be appropriately smart.
Boating and fishing yes. With limited time in the intense sun.
At least for now.
Until it 'smooth sailing' again.
And....
Make sure I feel comfortable enough to hold my wee 8-9month old niece safely.
My sister knows....
If I pass on the offer to pick her up....just like with Ethan when he an infant....
It means let me be....
At least for a little while.
Been a bit of a choppy year as the epilepsy is playing 'hide and seek' as it does every few years.
Oh well.
A new medication adjustment. Yet again.
A juggling switch of the when time of day or night I take the same amounts I am currently on.
A new medicine was added on in the fall to make it 3 medicines I take each day.
The target now is to try to seriously get the nocturnal time and early morning under control. Juvenile Myoclonic Epilepsy happens at night while sleeping and early morning upon wakening....for the full blown big seizures.
It been going on too long...the warning signs.
I stayed home/called in sick...May 17th....felt terribly ill like I'd had a full blown seizure during the night in bed. But also had felt REALLY LOUSY with seizure symptomology for days.....
Doctor basically...is getting on top of it now before it goes worse to 'there' based on the problems I been having getting progressively worse.
Ya think to yourself is it all in your head???? or it might be just emotional or stress or your own paranoia playing tricks on you....maybe ya just clumsy...
BUT...I am not prone to clumsiness.
But then...your very serious not great bed-side manner epileptologist looks at you as you tell him the things while you disallow aloud maybe ya just stressed and validates it is a real problem getting worse enough to warrant adjustments without saying it to you in words. Starts looking back at histories asks me to re-affirm when my last 'big' seizure was....July 2009....I pull out my seizure journal....he starts muttering details....taking new notes.... Endless writing....he gives me a paper pad...
'Show Me HOW you are dropping things...drop the pad the way it happens with the dishes etc....'
I've never had anybody ask me to SHOW it.
Then he asks me to pull out my medicine and show him the pills to identify the particular type of it I am taking....continues writing...dosage discussion....hours if I can tell him....the shaking seems to go on for. At what hour did the seizure in 2009 happen? Based on that when had I woken up....and ...taken my medicine??? etc etc etc...
And then there was the March bloodwork done. He furrowed his brow and commented....
At that moment I took it seriously as him showing me without saying it is real. There is a problem.
And he wants to prevent it from being a bigger one.
The 'control' needs to be gotten to again.
All the year it been a bit iffy and the dropping of dishes while doing them...books at school...a hairbrush....a shampoo bottle....a large carving knife...missing my foot to clank to the floor. Multiple times all of it over the months since who the hell knows? New Years time I think....maybe even during the Fall.
Hell....New Year's Weekend I was alone the entire weekend....and my hands were....yeah......tried to make something I liked for dinner to make it seem like a special time since I was by myself......all I wanted was a comforting meal....
Dropped a knife...in the way it shows it warning me....gave up...just left it....better not to to touch til later....so I shut the lights. The TV. stayed in bed...lived in the dark that weekend.....
Got lucky. The worst as far as I could tell....the arms the hands the discomfort....and nothing more. An ounce of help towards prevention....stay quiet stay safe does wonders if it works and no clues the next day of worse in my sleep and so THAT was good.
God Bless my family as they spent time on the phone with me New Year's Weekend, as I called to help myself feel better not knowing I was alone...they would've come immediately and I SO don't need that.
Problem is....my kind of seizures happen at night while asleep or in early hours of dawn/morning upon awakening and onward for at least 3hrs at the most likely time.
SO...
I believe in god with all my heart because countless times I should've been injured or dead when I think of all the ways I have gone down.
I CAN take care of myself. I do always.
But it doesn't make it 'fun' and it ain't easy.
And people with seizures as a general rule try not to live alone.
Bad practice.
AND I think when I go to Lake George this July 4th week coming up....
I will stay out of the water.
Just to be appropriately smart.
Boating and fishing yes. With limited time in the intense sun.
At least for now.
Until it 'smooth sailing' again.
And....
Make sure I feel comfortable enough to hold my wee 8-9month old niece safely.
My sister knows....
If I pass on the offer to pick her up....just like with Ethan when he an infant....
It means let me be....
At least for a little while.