Posted by Dan (126.96.36.199) on October 05, 1999 at 14:00:09:
In Reply to: at the end of my rope posted by Scott on October 05, 1999 at 03:56:32:
I may be way out of line with this, but I can't help but try to do what I can.
I am sending this via e-mail, as well as posting this on the board, in hopes that it reaches you.
I understand what you are going through, and I understand what your wife is going through. I
even understand some of the unsupportive messages that have been posted on the board in
response to your posting.
Over 17 years ago, I was finally diagnosed with cluster headaches. After about six months, my
cycles began to establish a pattern. I am what is called an episodic sufferer. One 45-minute attack a day for about six to eight weeks,
then remission for four to six months. The pain was incredible. Many times in the midst of an
attack, as the clock ticked by the minutes, I just KNEW that this attack was never going to end,
and I seriously considered suicide. Not only was the pain intense, but I could see what it was
doing to my loved ones who were trying to help. I thought over and over that if I werenít around,
they wouldnít have to hurt along with me. Fortunately for me, the attacks always ended within 60
minutes, but the last 15 minutes were the worst.
The biggest problem for me has always been the loneliness that I felt. Never once in the last 17
years have I met, talked to, or even known someone who suffered with the same affliction. No
one who has not experienced being completely alone and in pain has any idea what terror that
brings. Try as hard as they might, there was no one who could understand what I was going
through. Lucky for me, I found this wonderful website. Here were people who had been through
the pain. Here were people who understood. I would never be alone again. God had blessed
me with a support group when I needed it most.
I tell you this to let you know that I understand, in a very unique way, what your wife is going
through. But I think I also understand what some of the others who have posted are feeling. It is
bad to have this pain. It is worse to feel alone. But the worst of all, is to feel abandoned by the
people we think love and care for us. The negative postings about you, and dirested at you, I
think are a direct result of us having people we cared for not understand, or appreciate what we
go through. The anger expressed is not directed at you, but at those who left us when we
needed them most.
I also understand in a very unique way, what YOU are going through. Most of us sufferers have
never been in the position of trying to be a supporter I had a very special opportunity last month.
Claudette (youíll see her name in the postings here) stopped by to visit me on her extended trip
to see some of the people she had met through the site. I was overjoyed that she would visit
with me. Not only had the site provided me with contacts to other sufferers, but now I was going
to actually meet one, and compare notes. The visit beagn so wonerfully. Unfortunately, while
she was here, Claudette had a very bad attack. For the first time in my life I found myself in the
role of a supporter. Here was someone that I cared very much about suffering pain that I knew
only too well. AND I COULD DO NOTHING BUT WATCH HER SUFFER!!!. I prayed to God to
take away her pain. I prayed to let me take some of the pain from her. Finally, as the pain went
on, I became angry. First I was angry at the Beast. Then I became angry at God for letting my
friend suffer. Finally I became angry at Claudette, I am sorry to say. Why did she have to have
an attack while she was there with me? Why couldnít it have happened after she left? Finally I
became angry at myself for feeling that way.
I never really knew before the hell that the supporters go though. I always thought that the pain
was the most difficult thing to bear. I WAS WRONG!!! To watch someone you care about suffer
is far, far worse.
Please, Scott, donít give up. Your wife needs you very much. This site is dedicated to cluster
sufferers, and the pain that they go through. We can help you understand what your wife is
experiencing. We can help to give her strength to fight the Beast. We can help her by letting
her know that she need never be alone with the pain again. She can help us. She can let us
know what works for her, and that be the very thing that gives relief to one of us.
But, the site is also made up of supporters. Only you know what they go through. They will give
you strength if you let them. You can help them by letting them know that they are not alone.
They can share with you what works for them, and you can tell them what works for you.
We are all in this battle together -- sufferers and supporters alike. Not one of us has the strength
to carry this burden alone. Please donít leave us, either of you. We desperately need you both.
I am sorry I let this go on so long. If you need me, please mail me at firstname.lastname@example.org I
will send you my phone numbers, too. Please call, anytime, day or night, whatever the reason.
Iíll do what I can.
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