Yesterday was a pretty good day, the pain was not at its best for me but not at its worse either, I managed to go to the gym early in the day and after work plaid tennis with my girlfriend and we even had some quality time with each other so three workouts in a day. But last night we are laying in bed watching the news and she brought up wanting to go out some night to a happy hour or go out dancing with me and I gave my normal response of well will have to see how I am feeling, I hate giving this response but what else am I supposed to say? Being in noisy places is a trigger for me and can cause a sever attack of my SUNCT and cause me to be curled up in a ball for hours and the hit will start while I am in that environment and is not fun for anyone involved. I know she tries to understand but she gets frustrated and her response was something like “I am getting tired of just waiting all the time” I had no idea what to say so I said nothing. It really depressed me, I want to do more for her since she has done so much for me and I already push way harder than I would if I was alone to go out and do things and I am way more active because of her. I know she really did not mean anything by it and it was just her frustration slipping out and I know she knows I want to do these things with her and that sometimes I just can’t do them not when the price is so high but I do feel she deserves more from me than I can give.
She is a great woman and I do love her and cannot help but worry that someday she will get tired of dealing with my problem, everyone has their limits, just hope I do not find hers.
:P

Quote:

her response was something like “I am getting tired of just waiting all the time”

It's hard to know what to say to this Matt. 

Whether we are a sufferer or a supporter, we ALL get frustrated with our condition and that makes us say things that are hurtful. 

You described YOUR feelings here very well.  Can you sit down and talk to her just like you worded it here?  I'm sure she knows this is not something that you want either, but letting her know how you feel...that you're scared she will get tired of dealing with this and she might reach her limit.  Letting her get it all out when both of you are in a good frame of mind just might ease up the tensions and bring you closer. 

One more thing.  Can you send her here to speak with supporters who have gone through this a lot longer than she has?  They can give her coping techniques and suggestions as well as someone to vent to besides you.

My thoughts are with both of you.   

I'm with Linda.  She said it very well.

Jerry

Say yes, then wear earplugs.

If she's going to accommodate your needs most of the time, you can make the effort to accommodate her's some of the time.

Well she is starting to go through the change so I am dealing with that as well and trying to be as supportive and nonreactive as I can for her. I have told her about my fears of her having enough and she just assures me that she will not let that happen but it is a hard fear to shake when you don’t know yourself it would be something you could deal with. The fear is a good thing in a way, it forces me to do things that I normally would not do while in cycle and to stay a lot more active so it is healthier for me and drives me in a positive direction. I have told her she should come to the site and ready but she is hesitant to do so and I am not sure why, she may just think she does not need support yet since I do not let it show that much and she is not really dealing with much because of it. I am really good at hiding it and suffering in silence most of the time, she really only sees it when it is really bad and I am unable to hide it from her. I know I should not hide it but after all these years now that I have suffered through this it has become almost natural to hide it because it makes life easier, I just got so tired of answering questions all the time so not letting it show was easier for me and now I do it without even thinking about it. I also think it helps me stay sane for some reason, not letting it show and having people treat me normally most of the time makes me feel normal I guess strange I know but anything that helps keep the depression at bay is worth doing the alternative is just a bit too scary to think about at least for me it is.