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        Cluster Headache Help and Support >> Cluster Headache Specific >> Cluster Sufferer Manifesto
        
(Message started by: seasonalboomer on Jun 23^rd, 2006, 11:47am)

Title: Cluster Sufferer Manifesto
Post by seasonalboomer on Jun 23^rd, 2006, 11:47am

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

Title: Re: Cluster Sufferer Manifesto
Post by Charlotte on Jun 23^rd, 2006, 1:41pm

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

Title: Re: Cluster Sufferer Manifesto
Post by Richr8 on Jun 23^rd, 2006, 2:03pm

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?

Title: Re: Cluster Sufferer Manifesto
Post by pattik on Jun 23^rd, 2006, 2:13pm

Thank you, Scott. You do have a way with words. ;;D
I can't think of anything to add.

Title: Re: Cluster Sufferer Manifesto
Post by maffumatt on Jun 23^rd, 2006, 6:07pm

words to live by.

Title: Re: Cluster Sufferer Manifesto
Post by Grandma_Sweet_Boy on Jun 23^rd, 2006, 7:24pm

And thus - he's not just another pretty face! ;)

Very well put Scott - definitely words to live by.

Thanks
Carol

Title: Re: Cluster Sufferer Manifesto
Post by Sean_C on Jun 23^rd, 2006, 7:53pm

Two thumbs up bro [smiley=thumb.gif] [smiley=thumb.gif]

Sean........................... ;;D

Title: Re: Cluster Sufferer Manifesto
Post by LeLimey on Jun 23^rd, 2006, 8:21pm

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

Title: Re: Cluster Sufferer Manifesto
Post by Redd715 on Jun 23^rd, 2006, 8:58pm

Helen you just need a good remeinder to keep your wits about you. Check your PM's sweetie.

Title: Re: Cluster Sufferer Manifesto
Post by Jasmyn on Jun 24^th, 2006, 4:25am

A [smiley=thumb.gif] from me Scott.

Title: Re: Cluster Sufferer Manifesto
Post by Sandy_C on Jun 24^th, 2006, 2:01pm

Well said, Scott. I'll try to live by those words too.

And, Rich - you are right. Visit the newbies!

Sandy

Title: Re: Cluster Sufferer Manifesto
Post by seasoned_vet. on Jun 26^th, 2006, 11:46am

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!!!!

Title: Re: Cluster Sufferer Manifesto
Post by chewy on Jun 28^th, 2006, 6:35am

Ask DJ to pin it.

Throw it up on the general board to.

OUCH should adopt it.

Title: Re: Cluster Sufferer Manifesto
Post by Margi on Jun 28^th, 2006, 9:42am

on 06/28/06 at 06:35:58, chewy wrote:

OUCH should adopt it.

and so should every clusterhead. Well done, Scott!

Title: Re: Cluster Sufferer Manifesto
Post by Cathi04 on Jul 1^st, 2006, 8:46am

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