is there a post (i saw some sites on the net who had those.. but lost them) -
a post "for the loved one" - that one can send to his family/surronding to REALLY understand this horrible diease... ? i saw a main-post here.. but it's not what im' looking for..
i'm looking for a post to explaine from scratch this think,, but in a personal note - not only medical note.
i feel i can't even write straight and clear anymore
This is copied from Coping with crisis. under Face pain infor tab...... Min
Another step might be to share with your family member, a story that a patient told me which I contributed to the book "Striking Back -- The Trigeminal Neuralgia Handbook." The following is a close paraphrase.
To understand how I go through each and every day, you have to imagine that I am followed through every waking hour by an invisible 8-foot-tall demon. The demon pulls along with him a little brazier of hot coals in which he has placed several implements: a couple of knitting needles, a scalpel, a fireplace poker, a butcher knife. At random moments throughout the day -- but especially when he sees that I'm not anticipating what he is about to do -- the demon reaches into the brazier for one of his tools and rams the red-hot implement through my cheek and eye, twisting the implement as he does.
As I fall to my knees and curl up in a quivering ball, I silently plead with him in my thoughts to stop, for I cannot speak aloud through the pain. But he never does. He goes on stabbing me every 15 to 30 seconds, until my facial nerves have gone numb from repeated battering by this pain. "
"He will do the same to me a few hours later and there is no relief."
I was also thinking of the note that Min clipped in response to your question, Nir. Was there some other thought you wanted to share with important people in your life? I would invite anyone who is having a hard time understanding what TN patients go through, to read the materials under the "Face Pain Info" tab on our site menus.
Regards and best,
Red
hi min and red -
my pain gets worse - so forgive me if i sounds not very polite... you are WONDERFUL PEOPLE
i have to admit - i don't like to describe my pain in any poetic or imageiative way... like "it's like a truck ran over me".. . for me.. people might get it as a cliche... they don't really get it.
i decribe the pain as it is...just say ..imagine a tooth ache.. and now imagine it all day.. and all night.. and then for another day, and another day... and another day.. and so on...
but - i know every one connects differently. i just like to describe pain as it is.
although we are all here suffer quite the same.. and people here know what we are going thorugh.
KC- thanks for the link. i don't know if that is what i saw in the past - but the link is SUPERB.. even if a bit long (can intimidare people from reading).
Min - thanks.. and good night
I've always described the pain I used to have as a nail going up into my face or a screwdriver. That usually gets people's attention alright. . . Thank goodness, I have that one under control now. I used to have that on my eye tooth, that was how my pain started with the burning intense pain. I still get twinges, and it scares me cuz I don't want that one back! If you can get people to read some of the material here, it helps. My husband just recently read the coping with crisis and I've been on here for 10 months now. I told him not to be frightened by the title, there is some very helpful information about what I am going thru. It was helpful. So I wish you success. It may take time.
Wow -- if the demon paraphrase does not get peoples attention I do not know what will! If I can describe it without tears I use the screwdriver example too.
Min said:
This is copied from Coping with crisis. under Face pain infor tab...... Min
Another step might be to share with your family member, a story that a patient told me which I contributed to the book "Striking Back -- The Trigeminal Neuralgia Handbook." The following is a close paraphrase.
To understand how I go through each and every day, you have to imagine that I am followed through every waking hour by an invisible 8-foot-tall demon. The demon pulls along with him a little brazier of hot coals in which he has placed several implements: a couple of knitting needles, a scalpel, a fireplace poker, a butcher knife. At random moments throughout the day -- but especially when he sees that I'm not anticipating what he is about to do -- the demon reaches into the brazier for one of his tools and rams the red-hot implement through my cheek and eye, twisting the implement as he does.
As I fall to my knees and curl up in a quivering ball, I silently plead with him in my thoughts to stop, for I cannot speak aloud through the pain. But he never does. He goes on stabbing me every 15 to 30 seconds, until my facial nerves have gone numb from repeated battering by this pain. "
"He will do the same to me a few hours later and there is no relief."
thank you Red for suggesting the article concerning "caring for someone with trigeminal neuralgia"! I thought the writer did an excellent job describing what TN sufferers go through on a daily basis and how much of our lives this disorder affects. amy d
Actually, KC Dancer suggested the article, Amy... Credit where it's due.
Regards, Red