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Topic: Cluster Sufferer Manifesto (Read 631 times) |
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seasonalboomer
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Cluster Sufferer Manifesto
« on: Jun 23rd, 2006, 11:47am » |
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The "Alcohol" thread reminded me of something I've been working on......
A sufferer manifesto.
- I will remember that LIFE is lived in-between the “hits”
- I will focus my anger at having this condition on the headaches themselves, not on my family members, friends, or work associates.
- When I say to myself or others, “I would do anything to not have to suffer from these things,” I will look seriously at myself to see if I am or have reasonably tried everything (or anything at all) to not suffer these things in the way I am.
- I accept responsibility for taking my own prescriptive medicine if that is the path I have chosen. If I miss doses that result in me suffering, I own it.
- If alcohol is my trigger, I will either a.) not drink when in cycle, or b.) accept total responsibility for the results if I CHOOSE to drink. I will also accept responsibility for a possible ruined evening if I choose to drink and the result is that my supporter and I have to leave an event early due to getting hit with a CH.
- I will not blame my parents, my family or my god for Cluster Headache. It simply “is” a part of my truth.
- I will remember that each one of us has the ability to change another Cluster sufferer’s life by being a contributing citizen to Clusterheadaches.com. (Think about what all DJ has done, or Pink and Flash with Clusterbusters, or Nani with Kudzu and seeds, or Ben with Clustermasx)
- I will remember that everyone’s pain is their own, it is not my job to define it for them. But I can reach out.
- I will remember all the things I have found (and later discarded) that I thought “worked” for me when I read about what other sufferers have “found”.
- I will take care, when I communicate with others, not to impose my opinions on different treatments or medications, outside of my own experiences and side effects.
- I will not allow my Cluster Headache condition to define me. I am not (your name here), Cluster Headache sufferer, I am instead, (your name here), someone who happens to suffer from Cluster Headaches.
- When I’m not in cycle or not getting hit, and well rested I will prepare for my next cycle by building my ammo (both physical and emotional).
After a cycle I will take a few moments to thank those around me who have supported me. And I will do a thorough review of what worked for me, what were my triggers, what isn’t working and write down suggestions to myself on how I might handle my next cycle better.
I don't always live up to it, but do try.
Scott
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seasonal boomer
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Charlotte
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Re: Cluster Sufferer Manifesto
« Reply #1 on: Jun 23rd, 2006, 1:41pm » |
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Amen, brother. I'll try to live up to this also. For chronic, add that I won't blame being chronic - yada yada yada...
Charlotte
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Richr8
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Re: Cluster Sufferer Manifesto
« Reply #2 on: Jun 23rd, 2006, 2:03pm » |
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Thanks Scott! I'm going to pin this on my wall.
I would like to see one added that states:
When I visit CH.com. I will visit the new members area first to see what assistance I can lend.
Anyone else?
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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pattik
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Re: Cluster Sufferer Manifesto
« Reply #3 on: Jun 23rd, 2006, 2:13pm » |
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Thank you, Scott. You do have a way with words. 
I can't think of anything to add.
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
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maffumatt
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Re: Cluster Sufferer Manifesto
« Reply #4 on: Jun 23rd, 2006, 6:07pm » |
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words to live by.
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Grandma_Sweet_Boy
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Re: Cluster Sufferer Manifesto
« Reply #5 on: Jun 23rd, 2006, 7:24pm » |
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And thus - he's not just another pretty face! 
Very well put Scott - definitely words to live by.
Thanks
Carol
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Sean_C
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Re: Cluster Sufferer Manifesto
« Reply #6 on: Jun 23rd, 2006, 7:53pm » |
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Two thumbs up bro 
Sean...........................
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LeLimey
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Re: Cluster Sufferer Manifesto
« Reply #7 on: Jun 23rd, 2006, 8:21pm » |
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Not just a pretty face is right!
Scott I'm impressed and I don't say that often.
The only amendment I'd add is to agree with Rich
(nice to two blokes in one evening? I'm sick!)
Well done you
Helen
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Redd
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Re: Cluster Sufferer Manifesto
« Reply #8 on: Jun 23rd, 2006, 8:58pm » |
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Helen you just need a good remeinder to keep your wits about you. Check your PM's sweetie.
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Jasmyn
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Re: Cluster Sufferer Manifesto
« Reply #9 on: Jun 24th, 2006, 4:25am » |
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A from me Scott.
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Sandy_C
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Re: Cluster Sufferer Manifesto
« Reply #10 on: Jun 24th, 2006, 2:01pm » |
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Well said, Scott. I'll try to live by those words too.
And, Rich - you are right. Visit the newbies!
Sandy
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Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
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seasoned_vet.
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Re: Cluster Sufferer Manifesto
« Reply #11 on: Jun 26th, 2006, 11:46am » |
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hey scot, Tuck here, a newbee to the site but 23 year member of the club. All I can say is "Amen brother,Amen". wonderfully written, !!! Your head may hurt my friend, but your brain is working just fine... Thank you for sharing your wisdom!!!!
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smile,and be naked as often as possible
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chewy
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Re: Cluster Sufferer Manifesto
« Reply #12 on: Jun 28th, 2006, 6:35am » |
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Ask DJ to pin it.
Throw it up on the general board to.
OUCH should adopt it.
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| « Last Edit: Jun 28th, 2006, 6:38am by chewy » |
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Margi
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Re: Cluster Sufferer Manifesto
« Reply #13 on: Jun 28th, 2006, 9:42am » |
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on Jun 28th, 2006, 6:35am, chewy wrote:
and so should every clusterhead. Well done, Scott!
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Cathi04
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Re: Cluster Sufferer Manifesto
« Reply #14 on: Jul 1st, 2006, 8:46am » |
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Scott,
Wonderful! Simply wonderful!
I, too, agree with Chewy(ugh!)............sticky this to the top for all to read when necessary.
Thank you so much for this manifesto, Scott!
Cathi
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Life is not measured by the number of breaths we take but by the moments that take our breath away.
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