Don't know what to do

1

Last year a posed a discussion about the man I was dating and my frustration with trying to cope with this disease that he has. We are now engaged and it should be the happiest time for us but it is very stressful. His condition seem to be worsening and there is nothing I can do about it. I have tried to educate myself as much as I can about it, but I every time I mention something to him he doesn't think it will work or has said he has tried it.

I have read as much as I can about this and I feel helpless. Because I guess I feel that if I am with him and love him that this should help him somehow. Sometimes the things he says makes me think that he has given up. I try to keep him involved and active but sometimes he just can't. Sometimes it is just a few bad days but lately it seems like the bad days have been turning into bad weeks. It is so hard for me because I feel neglected and lonely. I try to stay positive and supportive but I great frustrated not necessarily at him but at the situation. He is able to function at work alright but when he gets home and then on the weekends it is so hard for him and he has nothing left to give me because of dealing with the pain.

I love him and I know I don't want to be without him. But I don't know if I can do this. I just wish that I could find some way to help him so that we could have a little bit more normal relationship.

2

This condition is very hard to cope with, and the loss of the ability to be his old self is probably very hard for him. Because he's a man, there is more cultural expectations of him that he probably feels he's failing at. Also, if he's managing to work and keep his job, this is probably taking so much out of him that when he gets home, he's just exhausted and frustrated.

I think it's awesome that you research this condition and try to help him, but it sounds like he doesn't want to be helped right now. When you've tried several meds and nothing works, it's hard to be positive. And sometimes when people without the condition suggest things to us, it makes us angry -- in the thought pattern of, "how can this person have any idea what I'm dealing with and now they want to tell me how to make it better."

I think that you should just continue to be there for him. That doesn't mean that you need to do everything for him, or constantly talk about his condition. Sometimes it just means that you're willing to sit on the couch with him, even if it's in pure silence. He may not say it, but just having you there probably helps him more than you'll ever know.

Maybe next time you suggest a procedure or a new med, and he says he's not interested, tell him that YOU are interested, and that you feel that WE have this condition, not just him. My partner always treats this as OUR problem to solve, not just mine. It makes me feel less alone. Also, he goes to every appt with me. Perhaps you could involve yourself by going to the doctor with him. These are just things that have helped me, but maybe they can help you too.

Even if he doesn't outwardly show you his appreciation, I'm sure you are a big part of what keeps him going. It's just so hard to deal with, and we all respond differently. I know this is hard, but you probably need to reduce your expectation on positive feedback, and know that it's there even if he doesn't say so.

Also, don't ask him how he feels every day. He feels like crap, and doesn't need to say it every day, reminding himself and you. Instead, study his behavior -- you should be able to tell his pain levels just by his behavior.

I wish I could help you more, but it's just so hard.

3

It must be very frustrating to be on the other side of this condition and I give you a lot of credit for loving your man enough to hang in. The issue of “invisible disabilities” is very difficult for the sufferer and those who love them. It’s hard to understand something you can’t see. You can’t make it better no matter how much you want to.

He’s in so much pain and so exhausted just trying to get through the work day that it’s understandable that when he gets home all he can do is crash. I don’t know what his situation is with doctors and medication, so can’t make any assumptions about his individual case.

I would suggest contacting our research guru, Richard Lahern, whose wife has had TN for over 20 years. I’m sure he will have some ideas that will help you.
You’re a courageous lady and he’s lucky to have you. I hope he doesn’t take that for granted.
Wishing you all the best.
Gloria

4

My boyfriend and I are having the same issues. He says he is frustrated, lonely, and feeling neglected. It is so hard to try to get him to understand what I feel and deal with and I try very hard to make hi, apart of everything but it is so hard. He doesn't completely understand what I go through on a daily basis.

One of my coping skills is shutting people out, it has been that way my whole life. I don't even realize I am doing it. He brought it to my attention that I was doing it and I am trying to diligently be aware of it and include him.

We used to have sex a few times a week and he recently brought it to my attention that we have not done that since before Thanksgiving. I hadn't even noticed it. He said he feels like the TN has robbed us of our intimacy and our connection. I understand what he is saying and what he wants but it is so hard. (We do not live together so he does not see what I deal with on a daily basis.) It is just a hard situation.

I wish you luck and hope you both can get back on track.

LaLa

5

Something that Crystal mentioned in an earlier post was she felt comfort resting her face on the softness of her partners body. This is something I have remembered and I now do it and it makes my husband feel he is doing something to help and I feel warmth from it. Its little things like that which I think can help a relationship. The other thing I love is when resting on the sofa and trying to get comfortable I ask my husband to stroke my feet for me, I find this relaxing and helps take my mind off the ATN and my husband knows I need him. I always thank him for doing it for me, not sure if he enjoys doing it!

6

As someone who manages to work a stressful job and be in pain (especially on work days), I understand your boyfriend's day off exhaustion. I took get so down that I feel totally hopeless and living with this seems hopeless too. One thing that I wish my husband would say to me when I am at my worst and saying that I want to give up: "Honey, you may feel ready to give up, but I'm not. There are more resources, more doctors and more information out there that we haven't stumbled on yet. I won't give up and I won't let you give up either." Maybe he just needs to know that you won't give up on him when he is ready to give up on himself.

7

I agree hope is so important and I like to hear positivity even if i then go ahead and disagree I love to hear it.

8

Elstep, I have my husband stroke my feet too! When I'm lying there relaxing, I just like him to be touching me, my feet, my legs, whatever. It just makes me feel better. I'm glad to see I'm not the only one!

9

You are all amazing women.

I love my boyfriend dearly but when I am feeling so bad I want my Mom.

Maybe it's because I am only 37 or because we are so close but I just want my Mom. She knows exactly what to do and understands me when nobody else can because my face is so swollen. I don't know what it is but if I have bad attacks and she is not around I panic and I want her. What can I say Mom fixes everything.