Posted by DJ (198.247.8.122) on August 07, 1999 at 00:59:34:
Some of you have asked me for my feelings on meeting another sufferer. You asked for it, you got it. However, it's really, really long. You may want to bookmark this post and come back to it when you have some time.
I have suffered from cluster headaches for 14 years now. I am an episodic sufferer. I have at least one cluster of attacks each year, sometimes two, each lasting 3-4 months. During those cluster of attacks, I usually have 3-5 attacks each and every day, most of them in the middle of the night.
I say this because I want you to know that I fully understand the pain associated with these damned things. I fully understand the frustration, the depression, the feeling of lonlineness, the feeling of anger, and the feeling of "why me". I am a very experienced sufferer.
When I built this site, it was built for all of the sufferers out there. I knew there had to be others out there who understood this horrible pain. It's turned out to be much, much more than a site for sufferers.
One of my good friends Elaine is also a cluster headache sufferer. She is a chronic sufferer. She's suffered from this pain for alot longer than I have, and much more frequently. She's had at least one attack almost every single day for 17 something years. Knowing the intensity of the pain, I honestly don't know how she, and all you other chronicheads do it. I know I couldn't.
Two weekends ago, my dear friend Elaine made the incredible journey from Rochester NY (and Drummer's garage), here to little ol' Wichita Kansas to meet me. She drove many, many hours in the complete wrong direction of her home to meet me. I was shocked that someone would put themselves through all of those miles just to meet me, much less bring someone else along with them!! At first, I thought they were crazy. Not like "internet whacko crazy", just 'regular' crazy for driving all those miles just to meet me!
Elaine, Heather, I'm glad you did. Thank you! You've changed my whole outlook on this beast called Cluster Headaches. You've changed my life.
Thursday night, we all BS'd, went out to dinner, talked about our attacks, shared what meds have worked and what meds didn't, and basically got to know each other as a human being, not the typist at the other end of an email. It was wonderful!
Friday night, Elaine and I met Nancy for dinner at one of the local steak houses. We laughed, shared, giggled, shared, took pictures, laughed some more, talked about the site, laughed, ate dinner (way too much btw), laughed, hit on the waitresses (that was me), took some more pictures, and basically had a wonderful evening. After dinner, Elaine came back here with me so I could scan some of the pictures from her CH journey. We laughed, shared, and talked as if we had known each others for years.
I poped open an beer (I'm out of my 'cycle') and Elaine was drinking water, water, water. She mentioned that liquor triggered her attacks, but beer did not and that she might like one. Ok folks. If you ever get to meet this wonderful lady named Elaine and she tells you that beer doesn't trigger her attacks, DON'T BELIEVE HER!! She lies! :-)
Suddenly, for the first time in my life, I was witnessing someone who suffering from the same pain that I've been through countless times before. The tormenting pain of a cluster headache. I was in the process of becoming a cluster headache supporter. For the first time in my life, I got to see what it's like from the "other side". It was horrible.
As I've made perfectly clear in this post, I know EXACTLY what Elaine was going through. The pain, the rocking, the cursing, the moaning, saying "I hate the fucking things". You'd think since I knew EXACTLY how she was feeling, I'd know what to do for her. WRONG! I was petrified. I was horrified. I felt completely helpless.
I quickly ran upstairs and grabbed my oxygen tank and one of the Imitrex kits as Elaine poured herself into a heap on my living room floor. I quickly got the O2 flowing and injected 1/3 of an Imitrex vial into her arm. She still cussed, moaned, rocked, and apologized. I cussed, moaned, rocked and apologized right along with her. I had no clue what else to do other than to say "I'm here". I wished it were me feeling the pain instead of her. After all, I'm an experienced sufferer.
For the first time in my life, I was a supporter of someone who suffered from cluster headaches!
Elaine got through her attack after about 1/2 an hour and everything returned to 'normal'. We laughed, shared. I finished her beer so I wouldn't have to go through that shit again!
After it was all over, I felt soooooooo terrible. I felt terrible for my ex-wife Kelly. I felt terrible for my mother, my father, my step-mother, my little brothers, my friends at work. Everyone who had ever seen me have an attack, but especially for my ex-wife Kelly. She was the one who had to live through all my pain. She was the one who had to get up at 3am and drive me to the emergency room. She was the one who had to lie in bed and listen to me scream, cry, cuss, and bang my head on the headboard of our bed.
I NEVER gave her any credit for that. I felt that I was the one experiencing the pain and expected her to be there. I NEVER gave her any credit for how she felt about it. I NEVER said "I'm sorry you have to deal with it too". Why should I? I was the one feeling the pain right??
The next morning, I called everyone in my family who had ever witnessed me having an attack. I apoligized that they had to see it. I apologized for not going out of my way to say "I'm sorry you had to see that, but thank you for being there for me".
I contacted my ex-wife and asked her to meet with me. I told her that I wanted to talk with her about my "headaches". She met me at the field where I was having softball practice. We sat on the tailgate of her (my old) truck and I told her the whole story of what had happpend the night before. I said I was sorry. Not because I suffered from these attacks, but because I never gave her any credit for being a supporter. I thanked her for all of the nights that she drove me to the emergency room during an attack. I thanked her for being there for me. I thanked her for supporting me. We cried, and said goodbye.
For those of you who suffer from cluster headaches, imagine having someone you love have a limb severed. Imagine what it would be like to hear them scream. Imagine what it would be like to be the only one there for them when it happened. What would you say? What would you do? That's what it's like for your wife, your kids, your friends, your SUPPORTERS. Remember that.
For those of you who support us, THANK YOU!