What do I do?

My husband won tickets to go see a band he really likes on Saturday. He's so excited. You should see his facebook page....4 post's in a row about this band. They are performing at this club in downtown orlando. He of course want's me to go with him. He knows I will love the music. I of course am terrified. The lights, the noise, the crush of people, standing room only. I hate how many times we've gone somewhere, I've had a bad attack and it forces both of us to leave, thus ruining the night. I don't want to ruin his night yet again. When I asked him this morning if he can find a friend to go with him, the look of disappointment on his face was heartbreaking. I hate how I'm always letting him down. I hate being the one that always ruins his night. Should I go and grin and bear it through an attack? Yeah right I wish I could grin and bear it....that's just laughable. I can barely resist screaming aloud during them. And I also have a tendency to throw up when the pain gets bad. How embarrassing would it be to throw up on a fellow concert goer? If he doesn't find a friend to go with I know he won't even go. And that will cause my heart to break all over again. What do I do???

Hi Brandywine,

I've been in your position and I put my foot down and insisted my husband take the kids or ask a friend to go with him to activities (especially concerts) that I know I won't be able to handle. He realized that by not going he was making me feel guilty and now he understands there are social functions that I'd love to go to with him but I wouldn't enjoy due to the pain, noise, light, etc.

Please encourage him to go with a friend as a favor to you.

Best of everything,

Zen

I would find out exactly what time the band you're seeing comes on (box office will have that info), so that way you can skip the opening act and show up right in time for the show. If your husband is willing to be in the back of the crowd, then there's no downside to not getting there early. If you stay in the back, it will be less intense for you. If you start feeling bad, you can go outside to the smoking section or anywhere that you can sit. The band will probably only play for 90 minutes max. If you time it right, you can pull it off.

But if you're not feeling up to going, then you have the right to stay home. You have to take care of yourself and not worry so much about his disappointment. Don't feel guilty for being in pain. You do what's best for you. I'm sure that's what he'd truly want anyway.

No one but you knows your limitations, but since you asked, I would try to figure out someway to go. Like crystaly said, find out about what time the band comes on and get there just for their performace. Your husband seems to be sympathetic to your disorder, so ask him which he would rather do, go with you, knowing that you might not be able to tolerate it (but are willing to try), or go with a friend and leave you at home. I hate to see you totally missing everything you love, because of this. Each of us has our own level of pain tolerance also. Mine is very high, so I chose to go and do and grimace and moan. If someone doesn't like it, they can leave. I know this disorder is yours, but you are married, so he is a part of this. Tell him what you want for him, but also tell him you would like to be a part of these things. Sometimes though, you both will have to leave. You are not ruining his life, TN is making both of your lives difficult. It is something you both are dealing with. You are not letting him down. You are being way to hard on yourself. Tell him how you are feeling. He knows you hurt, but he may not know how scared you. Oh, and BTW I went to concerts in the 70's. People threw up all of the time. Since you asked, I say go.

Brandywine, what a dilemma! It is lovely that you are the person that your husband most wants to go to the show with and it is so sweet that one of the reasons that you are reluctant to go is that you don’t want to ruin the concert for him by having to leave. Your suggestion that he go with a friend was an excellent one and a good compromise considering the situation; you want him to be able to go out and have a good time even if you aren’t up for it yourself. It is understandable that he is disappointed at the possibility of your not being able to go, as long as he doesn’t hold it against you. It can be a challenge to keep resentment in check even in a “normal” relationship and when you add a chronic pain condition into the mix, it’s something to be extra aware of and take steps to avoid.
What I have found is that when I go out to a concert, the first few songs are usually pretty hellish, but if I stick it out, things start to settle down after a while. One benefit to going to a show at a club is that it is usually dark and I am surrounded by mostly drunk people, none of whom are paying any attention to me whatsoever. That means that it doesn’t matter how I look and I don’t have to try to mask the pain on my face. If it gets to be too much, I take a break and step outside or hide in the restroom for a bit. I text my partner to tell him where I am so that he doesn’t wonder and worry about why I haven’t come back yet. We also have a deal that I can leave if need be and that he can stay there if he likes. (Luckily, we live really close to downtown, so it’s easy for me to get home on my own.) With these safety nets in place, I have never regretted my decision to go to a show (or any other event) so far, even when it causes a flare up. Plus, I figure that sometimes staying at home and living quietly causes a flare up as well, so I may as well go out.
I know that the whole point of this post was to get our opinions on what you should do, but I think you are the only one who can decide whether it is worth the risk or not for you to go to the show. If going to see this band is going to lead to extremely elevated pain levels, then it may not be worth it. If, on the other hand, you can plan ahead and find creative ways to deal with the pain, you might be glad that you went.
Whatever you decide, I do hope that your husband goes to the show. Dealing with TN can be exhausting, as we all know, and being able to go out and see his favorite band would be a wonderful thing for him to get to do. If you aren’t able to go, that doesn’t mean that you are letting him down, because you are encouraging him to do something that would be good for him, even if you aren’t able to join in for reasons outside of your control. That is the very best that you can do for him, for yourself and for your relationship.
Please let us know how this turns out.
Take care,
Chris

Thank you so much for all your great advice. We had a talk this morning and I told him all my concerns. He decided to skip the concert and instead we had a movie day with my Mom. I had one of the best days I've had in a very long time with only a tiny bit of breakthrough pain about 30 minutes before my evening dose of pills. I came home afterward and was even able to read awhile (something that I usually can't do). I'm reading "Striking Back" right now and even though I'm only about 70 pages in it's already shedding a light on this horrible condition we all suffer from. And it's brought up quite a few things that I definitely want to address with my neuro at my next appt. Anyways I'm gonna head to bed before I tempt fate and have any pain. Please, please let me have a few more days like today! I wish all of you the same. :) G'night!