So I've been married for 10 yrs now and have had the ATN the entire time, but it only naturally gets worse with time and so far there's nothing any doctor can do. So the conclusion to ever having kids is NEVER because I can barely take care of myself even though my husband is the full provider and I don't work. Are there any other people that feel so guilty for making your partner live "with" the pain, and so often you feel like you should let them go because of how much you "affect" their life, and most of all they will never be able to have the family they've always wanted. My husband has said he's OK with that conclusion but I just don't know if I can live with taking that away....... It's just nice to hear stories from other people that can relate, this site makes you feel like you aren't so alone in this world. Thanks for your thoughts.
Thank you so much for bringing this up. I have TN1. My guilty feelings towards ruining my husband's life are sometimes unbareble.
Yes, I too feel a tremendous amount of guilt at how this is affecting my husband and my daughters ( age 16 & 20 My kids were young when I was first diagnosed, back in 2002).
It’s hard not too.
I know it’s not “my” fault that I have TN.
But knowing doesn’t make it any easier.
My husband always says to me " if it was reversed, and I had TN, would you leave me?"
Well NO, I know I wouldn’t.
I love him, he loves me.
Is it easy? Nope.
Lately I’ve been encouraging him to go out with a friend, co-worker, or our daughters to do things .
When I’m able, I go with him. Those days aren’t very often though…
I think it’s important for us ALL to remember that our husbands/wives always have a choice…they can leave at anytime…some do, sadly.
I am immensely grateful that my husband is the man he is.
My feelings of guilt are normal. I don’t think I will ever be rid of these feelings… Despite my husbands reassurments.
I think it’s like everything else associated with chronic illness, it should be addressed, acknowledged, communicated and all we can really do is take one day at a time.
I will throw a different spin in here, I never feel guilty, my hubby married me because he loves me and for the past many years that has included loving me with TN, it is none of our faults we have this, yes I get bummed I am often not the person I was before TN, but I am still me, the woman he fell in love with. With all that said, when I married him he was a big, tough hard working man that made a great living. Now at 52 he is in a wheelchair, leg amputated, and in kidney failure on dialysis. And I am his caretaker, did it ever once cross my mind to leave him because of who he is now, never, never ever!!! As far as kids go, we decided to go with dogs instead, grin, that works for us. But I understand you may want to give him that, but if he is okay with not having them feel blessed he loves you that much. Somedays I feel like we are a pitiful couple, but those feelings don't last long, we are fighters and survivors. Guilt can eat you up inside, dealing with TN is enough to emotionally and physically handle. I have learned so much through my husbands illness and I have really learned many I thought were my friends and family are not, but we have each other!!! We do silly things like leave each other little love notes, it just keeps things alive even tho because of our situations the physical aspect is not there, but hugs work. Feel blessed to have an understanding hubby, as was stated some do run and that is when you know who someone really is. Embrace what you can do. I am having a heck of a bad day with TN but I have 2 Saint Bernards waiting to get groomed for shows and obedience, it must be done. Yesterday I was reduced to painful tears, but I just won't quit. So taking way too much Gabapentin, also topical, but gonna get it done. And yes, one day at a time, if I look too far into the future I would be insane. As the Bible says, tomorrow will have its own worries....You are not alone, you have friends here that care a lot and understand how you are feeling. Don't be hard on yourself, sounds like your hubby loves you, be happy about that! Many are alone, feel your blessings, I am certain you are a wonderful person and wife, don't let TN change your opinion of that :)
Betsy
Well said Betsy!! (((( hugs ))))
Mine is a sad story my husband didn’t believe that I could possibly be in so much pain until he saw my MRI. I often don’t even tell him I’m hurting and just live each day the best way I can. I have young children and don’t want it to stop me from spending time with them either. I know I push myself really hard but I want to beat this. I know we all do and I’m so glad we have each other for support.
You are not ever alone. Your TN family walks each step with you. I try and find a silver lining in each day.
I am 52 and was diagnosed just this past December 2013. My husband has been my rock. I have had about 3 really bad attacks that lasted anywhere from 10 minutes to almost an half and hour of intense pain through my right eye and up through my forehead. If he can go through those he is quite a husband. I love him very much. He sticks with me through the rough attacks and the milder ones. His sister has even come over and sat with me when he had to go to work when I was having the smaller attacks. My daughter is a wonderful daughter cause she has even sat with me through day when she could get the day off. My in-laws also have done a lot for us also. If I need her my mother would come up from Texas to be with me. I live in Iowa. Right know I am not having as much pain, knock on wood, which I hope means that the medicine is working. I am taking 1800mg of gabapentin a day and 1200mg of oxcarbazepine a day. I think this has brought all of closer together.
Hi
I have had TN for years, and I am a Marriage Family Therapist so I think I have some insight on the issue. Firstly, it sounds like you’re going through a rough patch. TN will affect everything in your life including your marriage: however, you can do a few things to improve your relationship. One very important thing you can do is build a support system that does not solely include your husband as a primary support member. It may be he is getting compassion fatigue, so it is imperative you ramp up a social support system that may include a therapist, doctor, close friends and clergy. A psycho-support system will alleviate the burden a bit. The other piece of this plan is learning self-soothing coping skills that can help you cope with pain. These two tips may help you. I hope it dose and I don’t mean to be too “preachy”
. I emigrated to Oz with my Australian husband 6 years ago so most of my family and life long friends are back in the UK. At 56 I dont have the network of friends and family that I used to have, sure I have made lots of friends over here, but "friends" arent like the ones you have had for 20+ years who know your deepest darkest secrets. When my pain is doing its damndest I am inclined to go be by myself, because I turn into someone even I dont like. I get all snippy & snappy. I'm an easy going person usually with a typical Liverpool sense of humour and find the change in me upsets me to tears. I am an artist (I will never be rich ... maybe when I'm dead!) but when the pain is bad all imagination leaves me so I cant even paint. I feel John married an easy going fun to be with person and now a lot of the time I am someone else! I know if the roles were reversed I would make the most of the good days with him and try and smooth the bad days. He is my Soulmate, I waited a very long time to meet him. Sods Law that TN turned up to through a spanner in the works!