It's been a long time since we first saw this reflection.
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Cluster Sufferer Manifesto
« on: Jun 23rd, 2006, 11:47am »   

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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

If everyone will follow this simple instruction sheet, we wouldn't need moderators, we'd never chase another sufferer away from here, and we'd sure hurt a lot less. What a beautiful summation Bob, thanks for the repost!

Joe

Guiseppi wrote on Dec 26^th, 2010 at 9:59am: