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From an Anonymous Sufferer (Read 34949 times)
QnHeartMM
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Re: From an Anonymous Sufferer
Reply #50 - Mar 29th, 2010 at 12:31am
 
Here here! Some great posts! Yea we've chased people off or left parties in a haste. It's what we do. When I hear his tank (I swear one of these days I'll name it) I get him his ice pack and red bull. Then I try to keep the house quiet. Thankfully, since he learned about O2, we're not talking about a long time (so long as he gets right on it).

As hard as it is for us - can't imagine what it's like for them.
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Jessica C
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Re: From an Anonymous Sufferer
Reply #51 - Jun 3rd, 2010 at 9:41am
 
I know its been a while since this was posted and I'm not sure that anyone will read this. But I agree and disagree with the ranting and raving that you did. I understand that it is hard to be a supporter. But you REALLY need to understand what your clusterhead is going through. I can't speak for all of us clusterheads but i can give you some insight itno the emotional challenges we face as well. It isn't only physical pain that we feel. I don't wish for you to be in pain but if you could feel ch for just a day then you would understand. There was a point in my life that I got so depressed and angry and sad about ch that i didn't even get out of bed. And not only because of how it affected me but how it affected others. I got to a point where I wouldn't even leave my house for fear that the slighest activity might bring back the beast with a vengence. I didn't speak to anyone I didn't laugh I literally didn't do ANYTHING. It took all i had emotionally and physically to get out of bed to go to the bathroom. And that is what i think you may be overlooking. Please remember that it isn't only physical pain that we feel.
I completely undersatand your frustration about him leaving a mess when the ch subsides but I must also let you know that once you get a ch you feel like you have just run a 3 day marathon and all you want to do is collapse. I don't know if any of this will help you. I hope it does help you to understand a little bit more where he is coming from . And please don't think I am attacking you. You have every right to be upset but maybe you sould cut him a little bit of slack. And like i read previously you really should sit down and tell him how you feel. It may help more than you think it will. So give it a try and let me know how it went.
    Best of Luck
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Anewbeginning1031  
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QnHeartMM
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Re: From an Anonymous Sufferer
Reply #52 - Jun 3rd, 2010 at 12:43pm
 
Yea I have no doubt that Jen and the rest of the supporters (myself included) have a pretty good understanding of what our loved ones are going through when getting hit. I think just as a sufferer sometimes needs to post on CH to vent about his or her pain, frustrations with doctor, insurance companies or life in general - so does a supporter somtimes need to let loose a little. It seems to me that is what Jen was doing and I'm glad you recognize that she was obviously frustrated but clearly still cares.

I believe that to be the purpose of "SUPPORTERS CORNER". We are here to support other supporters. We encourage new sufferers that post elsewhere to send their supporter here so we can support them too.

Clearly Jen needed some advice in coping with what sounded like an awful CH Cycle her husband was having. If we can't offer a place for her to do that then I think we are failing with our purpose. 

Hopefully if any sufferers read the posts in Supporters Corner they understand that we are working together to give each other the energy to be there for our dear sufferers and not take personally any comments made about the sufferer themselves.

Christy
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Mosaicwench
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Re: From an Anonymous Sufferer
Reply #53 - Jun 3rd, 2010 at 1:58pm
 
QnHeartMM wrote on Jun 3rd, 2010 at 12:43pm:
Clearly Jen needed some advice in coping with what sounded like an awful CH Cycle her husband was having. If we can't offer a place for her to do that then I think we are failing with our purpose. 

Christy


What she said so well, I echo completely!! 

Sometimes just knowing another supporter will come along and say "there there" to me is enough to keep me going.

And personally, I would never wish CH on anyone - not even so they could "understand."  Sure, I've never felt the pain of CH, but I've lived with it in my life for more than 20 years and know it as intimately as my sufferer.
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QnHeartMM
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Re: From an Anonymous Sufferer
Reply #54 - Jun 3rd, 2010 at 2:55pm
 
What really stinks is she only posted once which would lead me to believe she did not get the support she was looking for. I hope Jen is still out there reading and know that we ARE here for you, we DO understand how difficult it is, and to please feel free to post (or PM us individually) if we can help or if you just need to talk.
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chwife
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Re: From an Anonymous Sufferer
Reply #55 - Jun 5th, 2010 at 12:17am
 
Being a supporter is a process.  It changes with each CH, each cycle, each PF period. Maybe the process is ugly sometimes, but it's important for the angriest person to have a place to go to vent.  We all know how hard it is to watch a person suffer with these horrible headaches.  It's broken up plenty of relationships.  My husband and I had to sit down during a PF period many years ago and set up some "rules" about where and how we would deal with the headaches when they occurred.  We had to make a pact that he went in the basement (before any diagnosis or meds were available to us) and I took the kids upstairs.  I can't be in the same room with him, and he can't stand to be around anyone.  We didn't come to that overnight.  It was a process.  Let's give a little elbow room here.  It takes a long time to learn how to manage this illness and balance family/work demands as well.  There is no guide.  Without this forum, we are alone.
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« Last Edit: Jun 5th, 2010 at 12:24am by chwife »  
 
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QnHeartMM
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Re: From an Anonymous Sufferer
Reply #56 - Jun 5th, 2010 at 2:17am
 
Beautiful post, thank you!
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deltadarlin
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Re: From an Anonymous Sufferer
Reply #57 - Jun 5th, 2010 at 9:25am
 
chwife,
Excellent post.  I was lucky, we had friends who actually *understood* what my husband was going through.  So did our families.

You don't have to have pain to understand pain, you don't have to lose somebody to understand grief and you don't have to go through many things to have empathy.
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Jessica C
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Re: From an Anonymous Sufferer
Reply #58 - Jun 8th, 2010 at 7:53pm
 
I fully agree that supporters also need support. I can't imagine what they go through. I am thankful to have a great supporter. And sad to say that this person is not a member of my family. Well they are but not by blood. And I couldn't be more thankful to have this person in my life. And not only do they support me but i support them. I know it can't be easy to live with knowing that there is absolutely nothing they can do for my pain. So I just want to say to all of you supporters out there that there are not enough words to express how thankful i am for each and every one of you Grin
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Anewbeginning1031  
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