There are times when I wonder what I'm here for.
Am I here to make someone happy? Am I too selfish to dedicate myself to the people I love? To a cause? Here are the thoughts in my head. I just feel so empty and sad, and tired, and I want to give up...
Don't get me wrong, I know I live a privileged life, with all the comfort you can imagine, but my inner battles and demons are too numerous to count, and sometimes I really feel like giving up.
It's wrong and I know there are no "real" reasons for me to feel this way, but here are the thoughts in my head. I just feel like I'm all alone. Even when I talk to my closest friends, it's like there's some kind of border, a barrier they can't cross, things they can't understand no matter how hard I try to explain.
So hours tic by...
and my heart has its own reasons that reason itself ignore.
Bird by U&Me Blue
dimanche 11 novembre 2012
jeudi 8 novembre 2012
Sugar Rush
It's the third week without HM attack!!!
The new treatment seems to be the right one. I can do almost anything I want and that means going back to work. It's really like coming out of prison and be free again.
I can have projects again -albeit small- but still, it counts, right?
So the next step should be: get a new job and at long last have my own appartment. It's time for me to stand on my own again.
The new treatment seems to be the right one. I can do almost anything I want and that means going back to work. It's really like coming out of prison and be free again.
I can have projects again -albeit small- but still, it counts, right?
So the next step should be: get a new job and at long last have my own appartment. It's time for me to stand on my own again.
mercredi 24 octobre 2012
My life behind walls
My life is starting to look a lot like tthat of a prisoner...
Spending most of your time in your bedroom doesn't help you feel normal or free. Recently, that's the way I spend my days: Wake up, eat, shower, bedroom, bedroom and then eat again and bedroom again till around 5:00pm.
I must say that the lightheadedness I feel through out the day doesn't help either. I almost fell flat on my face yesterday while going to the drug store. So to avoid falling and fainting and scaring everyone every time, I stay at home. I know, it's not the best of plans, but well, it works. Well, sort of.
Having a social life isn't easy, but I try to keep in touch with my friends. I do my best not to feel depressed. It's stupid, but being all dressed up even if I'm home helps a lot. I do my hair and wear some make up and nail polish and it does help!
I also try to keep a good level of activities like knitting, playing the guitar or writing stories, and suddenly I don't feel so alone anymore.
Spending most of your time in your bedroom doesn't help you feel normal or free. Recently, that's the way I spend my days: Wake up, eat, shower, bedroom, bedroom and then eat again and bedroom again till around 5:00pm.
I must say that the lightheadedness I feel through out the day doesn't help either. I almost fell flat on my face yesterday while going to the drug store. So to avoid falling and fainting and scaring everyone every time, I stay at home. I know, it's not the best of plans, but well, it works. Well, sort of.
Having a social life isn't easy, but I try to keep in touch with my friends. I do my best not to feel depressed. It's stupid, but being all dressed up even if I'm home helps a lot. I do my hair and wear some make up and nail polish and it does help!
I also try to keep a good level of activities like knitting, playing the guitar or writing stories, and suddenly I don't feel so alone anymore.
mercredi 10 octobre 2012
Long drawn out days
That's official. Have been staying at home for 8 months now and the days seem longer and longer. I get so bored I could screem!!
I've been trying to go back to work normally, but every time I seemed to get closer to my goals, the job offer would just vanish...
So ever since the beginning of the month I try to find ways around boredom. I've tried a lot of things, but still it doesn't work.
Music, drawing, singing, knitting, housecleaning... There's only so much you can do within a day. I thought about translating fanfiction and other stories on the net. Just for the art of it.
Sounds like a good idea. And it can take some time, so I won't even see the time fly by.
Yeah, that's what I'll do, translating stuff. Alright, let's go!!
I've been trying to go back to work normally, but every time I seemed to get closer to my goals, the job offer would just vanish...
So ever since the beginning of the month I try to find ways around boredom. I've tried a lot of things, but still it doesn't work.
Music, drawing, singing, knitting, housecleaning... There's only so much you can do within a day. I thought about translating fanfiction and other stories on the net. Just for the art of it.
Sounds like a good idea. And it can take some time, so I won't even see the time fly by.
Yeah, that's what I'll do, translating stuff. Alright, let's go!!
dimanche 19 août 2012
The Examiner
Tomorrow is the dreaded 'follow up' MRI exam...
I know I shouldn't, but it really stresses me out. I don't know what to expect, or what to feel exactly. Relieved? Scared? Both?
I don't know...Gonna pray about it.
I know I shouldn't, but it really stresses me out. I don't know what to expect, or what to feel exactly. Relieved? Scared? Both?
I don't know...Gonna pray about it.
jeudi 9 août 2012
Mid-summer
Summer in Paris... Really isn't motivating. All those nuances of grey just make me want to stay in bed all day! Unless August is already Fall season, I really can't see why the weather is so gloomy here.
There you have it...I'm complaining again :o(
There you have it...I'm complaining again :o(
jeudi 26 avril 2012
Feeling under the weather
I've been feeling a little down lately.
Tried my best to see the bright side of things but it's become increasingly difficult.
Now my leg hurts all the time, like I'm permanently being stabbed in the thigh. There's just nothing I can do to ease the pain; make it go away.
I was wondering if it would be so bad to slip into a coma. With my condition, it seems like a viable possibility. But what would it change?
I'd just be a gigantic pain in the neck for everyone around me.
Yet...there'd be no pain, no loneliness or sadness. Sometimes I feel so lonely I could just die. I can't talk about any of it to anyone, though. My friends and family all have their own problems without me adding to it. But carrying this thing around is taking its toll on me.
Waking up in the morning and not knowing if you'll be able to go through the day without having an attack, being exhausted doing the smallest things... I try to stay positive, but I've got to admit that it's really hard sometimes. I don't want to sound selfish, but I guess I am. I'm too focused on my problems and don't see things as they truly are.
Maybe I'm saying this in order to hear someone tell me the opposite. Maybe I'm twisted like that.
I'm tired. I am.
Maybe if I just slept, it would all go away. Maybe...Just maybe. Sleep a while and then everything would be okay. Yeah. Just a while.
I'm just getting it out. It's nothing. There's nothing much to it.
"The lights are on but no one's home..." (Celeste Buckingham, 'Nobody knows')
Tried my best to see the bright side of things but it's become increasingly difficult.
Now my leg hurts all the time, like I'm permanently being stabbed in the thigh. There's just nothing I can do to ease the pain; make it go away.
I was wondering if it would be so bad to slip into a coma. With my condition, it seems like a viable possibility. But what would it change?
I'd just be a gigantic pain in the neck for everyone around me.
Yet...there'd be no pain, no loneliness or sadness. Sometimes I feel so lonely I could just die. I can't talk about any of it to anyone, though. My friends and family all have their own problems without me adding to it. But carrying this thing around is taking its toll on me.
Waking up in the morning and not knowing if you'll be able to go through the day without having an attack, being exhausted doing the smallest things... I try to stay positive, but I've got to admit that it's really hard sometimes. I don't want to sound selfish, but I guess I am. I'm too focused on my problems and don't see things as they truly are.
Maybe I'm saying this in order to hear someone tell me the opposite. Maybe I'm twisted like that.
I'm tired. I am.
Maybe if I just slept, it would all go away. Maybe...Just maybe. Sleep a while and then everything would be okay. Yeah. Just a while.
I'm just getting it out. It's nothing. There's nothing much to it.
"The lights are on but no one's home..." (Celeste Buckingham, 'Nobody knows')
lundi 9 avril 2012
The "Rain Man" syndrome
It's been a little more than a week since I've left hospital. In the last days I spent there I came to call my newest condition the "Rain Man" syndrome.
Well, it's quite simple: You take somebody and block that tiny little spot near the temple in your brain that controls language, articulation and swallowing (nothing major, just a little vein in there going rogue). You strain their vocal cords and withdraw sensation in tongue and throat "et voilà"!! You get yourself a nice, big and funny to boot "Rain Man" syndrome.
Of course, I'm being sarcastic... The doctors at the hospital made pretty funny faces when they realized I wasn't able to voice anything or articulate elaborate thinking. Even my eyes went kind of crisscrossing a little. Well it's kind of freaky, I must admit.
So I've taken to learn a few easy sings (Sign Language) to try to convey the basics to my family for whenever I need something. I also walk around with a note pad and a pen (plus my best friend: my crutch). Even when I go out. As it just pops out without warning...You never know.
But, yeah... I know, it just sucks. I make do, though.
I go on shopping, out with my friends and all that. Try to enjoy things, taking life as it comes, one day at a time.
The first time, I just couldn't realize what was going on, but once reality came crashing down, well, I was kind of scared. Then I was just frustrated. Then I just tried to calm down enough to think of ways to adapt, think of what triggered those symptoms and if they can be controlled.
I'm still in the thinking process, but I have pretty much accepted it. Not in a "there's no hope" kind of way, but more of a "let's get it over with" kind of way.
It's going to be a whole new ball game once I've got back to work. I just know how the kids might react if I go all "Rain Man" on them during class... Embarrassment would barely start to cover it. But well, crap!
Well, it's quite simple: You take somebody and block that tiny little spot near the temple in your brain that controls language, articulation and swallowing (nothing major, just a little vein in there going rogue). You strain their vocal cords and withdraw sensation in tongue and throat "et voilà"!! You get yourself a nice, big and funny to boot "Rain Man" syndrome.
Of course, I'm being sarcastic... The doctors at the hospital made pretty funny faces when they realized I wasn't able to voice anything or articulate elaborate thinking. Even my eyes went kind of crisscrossing a little. Well it's kind of freaky, I must admit.
So I've taken to learn a few easy sings (Sign Language) to try to convey the basics to my family for whenever I need something. I also walk around with a note pad and a pen (plus my best friend: my crutch). Even when I go out. As it just pops out without warning...You never know.
But, yeah... I know, it just sucks. I make do, though.
I go on shopping, out with my friends and all that. Try to enjoy things, taking life as it comes, one day at a time.
The first time, I just couldn't realize what was going on, but once reality came crashing down, well, I was kind of scared. Then I was just frustrated. Then I just tried to calm down enough to think of ways to adapt, think of what triggered those symptoms and if they can be controlled.
I'm still in the thinking process, but I have pretty much accepted it. Not in a "there's no hope" kind of way, but more of a "let's get it over with" kind of way.
It's going to be a whole new ball game once I've got back to work. I just know how the kids might react if I go all "Rain Man" on them during class... Embarrassment would barely start to cover it. But well, crap!
lundi 5 mars 2012
Love & HM
Got myself completely spooked by the idea of having a boyfriend lately...stupid, I know.
Took a while for me to realize I was still young and still a woman after my divorce two years ago, but I'm starting to reconsider things right now. But HM isn't exactly what you would define as sexy or attractive... It does take a lot for someone to go through all this with you...to stick around.
I know, maybe I'm over reacting (as usual, some might say), it's not like I was a leper or anything, but I realize that it was tough finding someone decent without HM, and now...Well, you get the picture.
Maybe it's nothing, maybe I just don't trust myself or others enough...God only knows.
Maybe I should just take things as they come...
One day at a time...
It's scary, though.
There. It's out of my system now.
Took a while for me to realize I was still young and still a woman after my divorce two years ago, but I'm starting to reconsider things right now. But HM isn't exactly what you would define as sexy or attractive... It does take a lot for someone to go through all this with you...to stick around.
I know, maybe I'm over reacting (as usual, some might say), it's not like I was a leper or anything, but I realize that it was tough finding someone decent without HM, and now...Well, you get the picture.
Maybe it's nothing, maybe I just don't trust myself or others enough...God only knows.
Maybe I should just take things as they come...
One day at a time...
It's scary, though.
There. It's out of my system now.
jeudi 1 mars 2012
Serial 'Piller'
8:00 in the morning, 8 pills :D
Morning cocktail:
Heart pills, pain killers, low blood pressure pills, anxiety pills...
Maybe I should just go all plant therapy on that...this is a tiny bit much...
Take it with a smile and be grateful: Family ties
Finally got a visit...from my Mom (bless her).
It took some coaxing but she barreled in Monday evening with the clean clothes I'd asked for. She was pissed because I had given her the wrong directions and it took her forever to get to the clinic, even though I had given her the complete detailed route from home to the clinic (nothing I do ever seems right with her...been this way for nearly 30 years, so I guess I really should be used to it by now, but still...).
Well she gave me the bags, and it had everything but what I'd asked in...But never mind, it's clean at least.
She called again last night to say 'Hi'...and gave my personal room number to one of the companies I work with so they can offer me more work - which is absolutely IMPOSSIBLE in my current condition - and they called bright and early this morning asking me if I could take on a new student.....
I mean, I'm in hospital for Pete's sake!!! I could hardly speak two weeks ago and barely manages to walk straight now, so why would my Mom do such a thing as give my room phone number to others than close friends or family?????
Well, just the other day I asked her if she could come and pick me up for a day with family (it's called 'allowance' and it's one day during the weekend from 10:00am to 5:00pm). It took some coaxing again, but she said yes...
Yet she texted me this morning asking me if I could be picked up earlier and brought back later than hospital schedule because she was otherwise engaged (something that's been planned a while ago, you understand, right?).
I'm not the pampered, prissy girl, but all of this tends to give off the wrong signals...
So I tell myself that my Mom reacts like that because she doesn't understand my disease and my need for family support through all this, instead of thinking she just doesn't give a crap about it and that I am big enough not to bother people with my problems....
So I tell myself: "Take it with a smile and be grateful!!"
Tough work, though
It took some coaxing but she barreled in Monday evening with the clean clothes I'd asked for. She was pissed because I had given her the wrong directions and it took her forever to get to the clinic, even though I had given her the complete detailed route from home to the clinic (nothing I do ever seems right with her...been this way for nearly 30 years, so I guess I really should be used to it by now, but still...).
Well she gave me the bags, and it had everything but what I'd asked in...But never mind, it's clean at least.
She called again last night to say 'Hi'...and gave my personal room number to one of the companies I work with so they can offer me more work - which is absolutely IMPOSSIBLE in my current condition - and they called bright and early this morning asking me if I could take on a new student.....
I mean, I'm in hospital for Pete's sake!!! I could hardly speak two weeks ago and barely manages to walk straight now, so why would my Mom do such a thing as give my room phone number to others than close friends or family?????
Well, just the other day I asked her if she could come and pick me up for a day with family (it's called 'allowance' and it's one day during the weekend from 10:00am to 5:00pm). It took some coaxing again, but she said yes...
Yet she texted me this morning asking me if I could be picked up earlier and brought back later than hospital schedule because she was otherwise engaged (something that's been planned a while ago, you understand, right?).
I'm not the pampered, prissy girl, but all of this tends to give off the wrong signals...
So I tell myself that my Mom reacts like that because she doesn't understand my disease and my need for family support through all this, instead of thinking she just doesn't give a crap about it and that I am big enough not to bother people with my problems....
So I tell myself: "Take it with a smile and be grateful!!"
Tough work, though
Discoveries
My life behind walls is a blog dedicated to living with HM.
Found it extremely touching and real.
Go check it out!
mercredi 29 février 2012
mardi 28 février 2012
WOW!!!
This is my first-graders (class 2010-2011).
Picture taken a few weeks prior to my return home and a few weeks after my very first HM attack.
Love the heck out of these kids :o)
Miss them so much ;o(
How to cheer you up
You recognize him???
There's nothing like a good Wolverine to cheer you up!!!
There was nothing on TV tonight (French TV programs suck like that, yes...and it sucks even more when you're stuck in a hospital room), so I've decided to make it a Wolvie night.
Noticed the glittery sparkles on the DVD case and weird lettering?
Just a little souvenir from Japan! I'm a huge Wolverine fan, and Hugh Jackman IS the perfect match for the role. I just couldn't help myself from buying the movie, although I'd seen it 5 times at the theater in France and went to the red carpet event in Tokyo (saw the real flesh and blood Hugh Jackman!!!)
Huh...(sighs wistfully)
Aye, aye Logan Lovers ;o)
Ball it up
Today we've started on the ball therapy.
We use this gigantic ball to stimulate muscle response.
Laying on your back, ball under your butt and legs on top of the ball....Push hips up, then bear down...
Held twenty minutes then had to go back to my room :o)
Saved by the migraine!!
^_^
lundi 27 février 2012
Look who's keeping me company!!
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My friend Andy picked it for me at a game center in Japan. Cheers me up during physical therapy :o)
HM in France
I've read a little here and there and it's sad to see that France has very little information available about HM. Most people have never heard of it (not even regular physicians).
Some neurologists though, have read about it mostly in American medical articles and rely a lot on existing research groups in the US.
Yet two main centers have recently opened in Paris in La Pitié-Salpétrière and Lariboisière, whose neurological research centers have started working on genetic reasons for FHM (Familial Hemiplegic Migraine).
You can find information here (French readers only):
http://www.orpha.net/consor/cgi-bin/Disease_Emergency.php?lng=FR&stapage=FICHE_URGENCE_M3
Some neurologists though, have read about it mostly in American medical articles and rely a lot on existing research groups in the US.
Yet two main centers have recently opened in Paris in La Pitié-Salpétrière and Lariboisière, whose neurological research centers have started working on genetic reasons for FHM (Familial Hemiplegic Migraine).
You can find information here (French readers only):
http://www.orpha.net/consor/cgi-bin/Disease_Emergency.php?lng=FR&stapage=FICHE_URGENCE_M3
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