Well, I never thought I would be writing on this subject but here goes nothing. I have been dealing with my TN for about 9 mo and I guess that must be my support systems breaking point.
I have been a hermit for most of that time although I have never really gone out that much other than with my mom, husband, or a close dear friend. I had my MVD in August with minimally successful results. I wonder if my husband in particular had pinned all hope on that “fixing” me and when it didn’t wow…
His support has really fallen away. He says things like we “never go anywhere anymore” and acts as if I’m making more of the pain to get out of going out etc. My mother who has been my ROCK has seemed overwhelmed with the whole thing as of late. Mon was my 1st day back to work and everyday all I could do was crawl into bed until the next work day. Yesterday I had a migraine (which I NEVER had until TN) so I stayed in bed all day.
My close friend who is such a sweetheart has started nursing school and is drowning in a sea of homework and clinicals ~ boy do I remember that yuck so I understand her being busy. I guess I feel as if I will have to push myself to go out with my husband and not mention ANYTHING reg pain or how I feel to anyone even when they ask???
You have reached that cut off point that some do in gaining compassion. I have come to the conclusion that only a few enlightened "others" fully understand invisible illness. That is why all these support groups were started. So we can mutually hold one another up. Sending you caring, healing thoughts. I hope for better for you soon.
Please know that you are not alone,the members here know what you feel and are here for you. I realize that it is not the same as immediate family but it is an awesome extended family. I hope you feel better soon and have many painfree days ahead!
OOHi Judi, I also had an unsuccessful MVD and it was the lowest point in my 5 year journey with TN. We all went into the surgery believing this was going to cure me!! When it didn’t it force several people out of my life too. I don’t think they could handle the fact that TN is a lifetime disease for me. You need to be honest and open with your loved ones and when you hurt, there is no shame in saying that. It isn’t a problem from your end and the people who do love you will come to understand how your life with TN is. I also try to share my best days with the people who mean the most!! They need to see that inside this broken body, the same person is still there…but, with other needs. When you feel when enough try to focus your attention on meeting their needs. Make a nice dinner, take your mom out for lunch, meet your friend for coffee. And let them share their feelings. Grief comes in many different forms and it sounds like your loved ones are grieving. No doubt they still love you and would do anything to help. Maybe a step away for them will allow time of refreshing. These people still love u very much. They just don’t understand TN. Give them time. One thing u can rest in knowing that this TN family understands and is here fighting with you!! U will find the best support here…Be patient with yourself and allow yourself to rest when u need too…((.HUGS))
I know how hard it is dealing with this condition, and how important it is to have the support of our families. However, I think it's important to remember, that this is hard on the caregivers too. Your husband is certainly suffering, watching you in pain and unable to help. And it's likely that he's so worried about taking care of you, that he forgets to take care of himself. And then it reaches that point where he "blows up." It is not your fault. And it's not his fault either. You're both in a very tough situation and it's hard. Sometimes people displace their anger. I'm guessing that when your husband complains that you don't ever go out anymore, he's subconsciously upset about the whole situation and trying to find an outlet. I would encourage him to go out without you. He does need some "him" time.
Unfortunately, you'll find that over time this comes even more true. People have their own lives and they get caught up in their own problems and lives. Your husband will be the one that sticks by your side. Though he's currently struggling, he'll find a way to accept this and hopefully you'll get the support you need from him.
It's really hard for others to understand the pain and fear this condition brings. I don't know that I would be able to fully understand if I were not a sufferer myself. You have all of us here at this site, and we're here for you, and we understand. You're not alone. And whenever you feel alone, please log on so we can be here for you.
I am truly sorry that you are dealing with these difficulties.
Everybody copes differently and I think it is hard for family members when they start to realize that there may be no permanent ‘cure’ and that everyone is living a new version of “normal”.
I have a cousin who has had multiple sclerosis for 13 years and she learnt very quickly that some friends were just not going to be there for the long haul. It is just human nature that as we change or circumstances change we are no longer the same people. Not better or worse, just not the same. Some people in our lives struggle with the new reality, it is hardest of all for our close friends and family.
Sometimes if i am having a good day I really try to do extra little things that make my family appreciated. I send my mum flowers or take her out for coffee etc. I love to leave little sticky notes for hubby in the shower, his car, or on his lunch. It is such a little thing but he always seems so pleased.
I would talk to your husband about how he is coping, I think it can be very hard for our partners to realize that they may not be able to fix this, they have the same sense of helplessness as experience sometimes.
Please come here whenever you want to talk, we understand.
Thank you everyone all the insight from everyone has helped me see my husbands side of things. I spoke to my husband this weekend and apologized to him for not taking his feelings into account during this journey. I’m not expecting things to change overnight but at least the communication has started so we shall see… Thanks again
My husband barely replies when I'm in pain, even when he hears me YOW from a zap , or if I tell him where it hurts. The few friends I have really don't understand, esp. since my MVD was over three years ago and they all think I'm "fixed". I don't know if I should keep the pain to myself as much as possible or if I should let my husband know. He still doesn't "get it", encourages me to work more. I too on the days I work, that's about all I do. Today was an esp painful day having to medicate 3 times already. Ready for bed now and sweet blessed relief while asleep. Take care, kg
Hello Judi, I can feel how sad you are. I can identify with you & I think alot of others on this site can also. I felt very alone until I found this site. Although I had my daughters to love me, I found that I slowly just stopped living life. I was married & when I became sick, my husband was horrible to me. He blamed me for being sick. In fact he came in to the hospital & was so aggressive, that the head of nursing said they would have security throw him out if he comes back as I would not recover if I had to put up with that. I was so very sad. I had no family in Brisbane. My husband blamed me because, all of a sudden… I couldn’t work or take the kids to school & cook etc. instead of having the love& support of the one person I should have! It was as devastating as my TN diagnosis, to be treated like that, by the man I loved. I decided, that I have to just keep going, because I am worthy of happiness. One day. Stay strong, you have love, support & friends here. Hugs Sally
This website has been helpful to me. Although I have not had a pain episode since onset in August, I always know my TN is there. I know that I need to get back into a small group or Bible study for support since my traditional line of support does not understand. That is impossible. Only my mother, who has MS understands how I feel. I did go back to work this past week and one very obnoxious co- worker asked me if my "condition was permanant?" It dawned on me that telling the world about my TN was perhaps not the best idea. You get put in a box with the sick. I shall use more discretion down the road. Make the most of every day. When you feel your best, go out with your husband. What is a MVD?
