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        Supporter's Corner >> Supporter's Corner >> Question to Supporters
        
(Message started by: firecracker7481 on Jul 12^th, 2005, 2:43pm)

Title: Question to Supporters
Post by firecracker7481 on Jul 12^th, 2005, 2:43pm

I am a 24 y/o female who has been suffering from CH for nearly 8 years and was just finally diagnosed as having CH last week.

I am living with roommates and work full time. I am an episodic suffer with my cylcles occuring every one to two years.

My question to everyone here is, what can I do as a suffer to make things easier for my roomates/friends/co-workers when a cycle hits?

Most everyone in my life at the moment has been fairly supportive but I know it has to be taxing on them, not to mention I really do not feel like they truly understand the seriousness of my condition. I know that I tend to keep to myself as I usually hit really bad depression during a cycle and that is just taxing to be around.

Is there anything that I as suffer can do to help them understand or make life easier for those that surround me when I go through my next cycle?

Title: Re: Question to Supporters
Post by thomas on Jul 13^th, 2005, 3:19pm

Give them copies of this.

http://www.clusterheadaches.org/Cluster%20Headache%20Syndrome.doc

Title: Re: Question to Supporters
Post by Margi on Jul 13^th, 2005, 3:55pm

on 07/12/05 at 14:43:04, firecracker7481 wrote:

My question to everyone here is, what can I do as a suffer to make things easier for my roomates/friends/co-workers when a cycle hits?

The easy answer here is: stay in remission! :)

Of course, we all know that's not possible. So print out what Thomas gave you and let them learn. Educate, educate, educate. The more people that understand what it is to be a clusterhead or live with a clusterhead, the closer we get to getting the publicity we need to someday find a cure.

Title: Re: Question to Supporters
Post by firecracker7481 on Jul 13^th, 2005, 4:34pm

[smiley=sayyes.gif] LOL... Stay in Remission... I never would have thought of that...LOL If only I could be so lucky... I swear after every cycle I pray that it is my last and just when I finally think I am done with CH it is back to haunt me again...

Thank you for the print-out I had already found a copy and I absolutely loved it. My friends and family were completely amazed by reading it. Is there anything else that any of you might recommend that I do on a personal basis to help them. Everyone is very timid on talking about the subject around me as if they think I will break. I tell them it is not a problem, that I just want to help make life easier on them when I am in a cycle as I know that dealing with my disorder is not an easy thing to do.

Title: Re: Question to Supporters
Post by thomas on Jul 13^th, 2005, 4:55pm

The best thing you can do for them, will help you as well.

When not in the process of being hit or recovering from a hit, try to do your normal life activities, this will help your morale and limit the amount of time you are dwelling on the subject. It is hard to do, it has taken my 13 years to get to that point. And most importantly don't let CH define who you are as a person. I don't let it define me, I was who I am before I had my first hit, and will be the same guy after I've had my last. Oh yes, I am a sufferer AND a supporter, so trust me, I've been there, done that, got the imitrex whelts to prove it. ;)

Title: Re: Question to Supporters
Post by yikes-another-one on Jul 14^th, 2005, 11:04pm

:)
I know it's hard to be out in public and get the hits, so it is easy to turn down invitations to get out and about.
Some people get to thinkingyou are avoiding them or using it as an excuse....

staying open and honest is the only way to combat it. when they know you had five hits recently, and that is why you are too tired to go to a party...or that bright lights hurt, and so you odn't wanna go see the newest Star wars movie... you know... giving more detail tends tohelp them realize it's not jsut an excuse....

Title: Re: Question to Supporters
Post by thomas on Jul 15^th, 2005, 9:42am

on 07/14/05 at 23:04:34, yikes-another-one wrote:

you odn't wanna go see the newest Star wars movie... ....

The light sabre battle between Anikan and Obewan just about brought on a hit for Gena and myself in the theater.