Hi everybody- I am new to this board- although I have been a visitor of the site before.

I never felt compelled to write, but I need some advice. My fiance has been cluster free for 3 years, and we have been together almost three so I was not around when he had his last attack.  

Well, as of late he has been getting attacks and I do not know what to do.  I feel as though if I do nothing I am bad, and if I try and help I get yelled at. I know that the yelling is because of the pain but I still do not know what to do. Usually when he wakes up with an attack, I leave him alone, but I feel like the most horrible person ever. I just try and go back to bed because I know whatever I do will not help and I will just be in the way.

And tonight, I had no idea he was hurting(he told me he felt an attack during the day but that it was better) so bad and he got mad at me for not realizing he was in pain. I am at a loss and feel helpless!! What do I do??? If I could give any amount of relief i would!

I honestly feel like I am damned if I do, damned if I dont (in dealing with his attacks) I just want to help and be supportive. I love him with all my heart and it is breaking!!!

Thank you so much to all of you. I would appreciate all the advice I can get.

Basically, I am lost

Thanks!

Hi Lindsay,

Lots of us prefer to be left alone when we're being hit.  I'm a "hider" myself, so I understand. (Obsessively so--I don't want ANYONE to see me.  If I could pull the earth over my head, I'd do it.  My wife of 33 years has seen me get hit more than once, but she knows to leave me alone to deal with it.  My daughter's almost eighteen, and she's NEVER seen me get hit.)

Sounds as if your fiance is cut from the same cloth. 

Don't feel bad about it, and don't worry that you're not "doing the right thing".  We all have our ways of dealing with it--some need others around, others just need to be alone to fight it to a draw.  You'll both come to whatever you need to do, given time. 

Go to:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

...and talk to some of the good folks there.  I'm sure they'll be able to give you good advice and insight.

Hang in there, kiddo.  You both can get through this.

All the best,

George

If worse comes to worse, tell him, "I can't know what I don't know. Therefore, you have to tell me."

You could make some suggestions, too. Offer to get an ice pack from the freezer, or open him an energy drink, or get the oxygen ready. And be prepared to be told that you can't do anything. If that's the case, don't do anything. Go back to what you were doing (including sleeping).

But the whole getting upset over you not being able to sense that he was in pain - that's for the birds. Say, "I do a number of things very well, but reading minds isn't one of them."

Might I suggest that the sufferer should make an honest attempt to put themselves in the supporter's shoes for a minute. Try to imagine what it's like to see someone you love going through this. Then do what you can to try to make it not so horrible. It's unforgivable to me to take it out on the ones you love.

And BTW, photosensitivity is not a common characteristic of CH. It can be, but it's not common. I've never had bright light trigger a hit, and there are lots more of us for whom it is a non-issue.

Quote:

I can't.

Not since you stopped taking my calls.

You two have to talk about this issue. Make a plan, he gets hit, you do this and that. Agree on it. He does need help, he may not know it.
  My wife can tell when I am going to be hit almost as fast as I can. She knows what to do and when by now. Only because we have discussed it many times prior. Never when its happening. In his defense this is acute critical pain, you dont want to talk, explain or request anything. Usually I am speaking in tongue's and request's are grunted in one word, between gasp's for air.
Next time quietly put on the coffee, grab a cold rag, drag him to the 02 or whatever you have agreed on. Then get the hell out of the way.
Or whatever you have agreed on. Good supporters are needed and wanted, despite our mixed signals.
all the best, and do hang tough...YOU ROCK
thebb

Hi Lindsay!
I wanted to let you know that my situation is very similar to yours. I have been with my boyfriend now for over three years, since March of 05. In August of 06, three months after we bought our home together, he got an episode that lasted about 5 weeks. He was cluster free for about two years and then about a week ago, it the hell started all over again. This time they are not coming every day, thank god, but when they do, they seem to be lasting longer, three hours is the current record. In fact, tonight we just returned home from the ER where we waitied about 40 minutes only to have the beast retreat before being seen by anyone. It is so amazing to me how you can be in an ER with a grown man crawling on the floor and screaming to die and have no one give him anything. I am going through what you are going through. You could ask him what he would like from you when he has an episode. For Matt, I just ask him if he needs anything and then let him know that he is doing great and it will be over soon. Then i shut the door and hop on the internet. I at first would stay with him but this was just too uncomfortable for both he and I. He does not like to be touched at all so I just leave the room. I hope that you guys communicate about what he needs from you. Dont take it personally when he gets mad because it is the pain talking and not him. Take care and hang in there. I hope the pain is over for your fiance soon.
Krista

Lindsay,

As one other poster put it, i'm a hider.  I usually go to my bedroom, turn off the lights and just try to find soothing positions with an icepack even if a position is for 10 seconds of relief.  Yes, I don't have O2 yet, but i'm working on it.  I tell my wife as a cycle starts that I love her for understanding and bare with me, remission will come again.  Her "understanding" alone has helped me along.  Her best way of helping me is leaving me alone.  I would never say anything for not helping me and she knows that.  I would imagine that some get really agitated after an attack and take it out on others between hits.  I wouldn't take it personally because your fiance is probably going through some anxiety after the attack.  You should get him to speak on this site so he can see how we deal with it with other family members.  We understand that others don't know how it feels, but support is the biggest help.  You're an amazing person for being there for him.

 

Lindsay,

My hubby would like to be a hider.  He prefers to keep to our basement and live in the dark quiet.  He really prefers not to go out at all because he feels he will make everyone else feel bad because he is sick.  If he had his way, not even our kids would see him in pain.  It's just the way some people deal best with the pain.  He also doesn't want to "bring people down" because he is sick and can't be his normal self.  Doesn't want to be a bother or a "downer", his words.  Hope this helps you understand your fiance.  And, since you originally posted in July, I truly hope this CH episode has passed. 

Hang in there!

Hugs!
AElf

Glad things are looking up for you all.  

Pat yourselves on the back.  It's a tough ride and you're just about to the end.

Jackie

A lifetime remission would be awesome. Thanks for being the golden supporter you are.

Joe

This thread made me smile. It's like a little bit of hope to hear someone coming out of a cycle. It reminds me that mine too shall pass. I absolutely hate being alone at anytime in my cycle, but i have to. I smile when the kids come home from school and when my husband comes home from work. He keeps fresh cold rags on hand during my hit and he asks if i'm ok...i'll usually ignore him until it lets up and then tell him i'm getting better. When the hit is over i reach for his hand. You know when someone truely loves you when they still see the beauty in your pale face, messed up hair, dark eyes...etc. You supporters are the reason most of us hang in there and fight.