i've suffered for so long and have watched my family more or less distance themselves from me. I was the invisible person they stopped asking how i wasa as they knew so it was like no one cared anymore. I had my mvd last week. My hearing is worse and i just feel myself so depressed. I should be jumping for joy and yes i am so happy the pain is gone but i'm sad now. I almost don't know how to have a normal life anymore as it has been so long since i have. I hadn't chewed a streak in over a year. Why is my family still acting like i'm invisible? They don't have to hide from me having pain anymore i'm no longer the family problem. I just feel sad now, and distanced from everyone. They never could understand the agony the pain brought. The surgeon gave me back my life but what happend.
sorry sluggo-- I am a newbie-- but the emotional roller coaster already is insane-- be gentle with yourself-- look what you have endured!! You are strong and brave and wise from the struggle. Step out and find a group of people you enjoy being around... I find that volunteering is a great way to connect with people and do good! I don't know if you are in a city but meetups are also a great place to meet local people doing various fun things-- just type in "meetups" and your zip code.
Blessings and prayers to you on your journey!!
Nobody in your house will change until you tell them what u just told us… Tell them of your joy and share it…then when you have energy…start living it for yourself…you are in remission now… Get around others who are positive
Amen Kc! Ditto…!!!
Sluggo, I have found that now that the pain isn’t the focus and my mvd issues like the fullness in my ear and headaches etc are gone, the emotional “stuff” is at the surface…
All we can do is face them, and work through them, if you can’t do it alone by journaling or talking to your family or a close friend then seeking out a therapist to talk about it all can be a huge help.
None of us are immune to the emotional roller coaster, and as I’ve said before there most definitely are emotional side effects from living with TN.
One day at a time, seek out help to deal with them all, it can only make you stronger and give you the tools to move on with time.
Positive thoughts to you, Mimi
Wise advice KC!! I am too tired of being the invisible person so I just started doing the things I can do and work within my limits. I did tell my dh what I was feeling and he became more sensitive towards me. Right now I am on a trip with my 4 kiddos. We are driving, and it's taking us through many states. I work within my limits and my kiddos know waht they are and we're doing it. I will say it is some of the best medicine since 1) it's 109 at home and I'm not there 2) It has allowed me to see that I can still do what I can do things without being "babysat" 3) I am seeing some beautiful country, much of which I have never seen before 4) I am able to help my best friend since high school, that is having surgery for uterine cancer, and beginning treatments & watch her son, helps me not focus on me, remembering I am not fighting for my life, just the quality of life. This is a major victory for me, and yes, my husband has been really nervous, but it's helping him also see that I can do things and have fun and make memories with my kids. Just start doing what you can, leave the nah-sayers behind!! blessings~~
Sluggo, I am sad for you. Often the aftermath of surgery, even when it has been so successful, is rather a come down. There is no longer the worry of surgery, will it work etc. so you have a new focus now. As a group we cannot change your family, alas! But we are here for you and offer support and comfort to offer a little love to you and each other. There is advice about educating family members about our TN in the FACE PAIN INFO tab. It is excellent, let’s hope the recipients do not have “deaf” ears. Take care.
Hi Sluggo!
I'm so sorry you're feeling this way. Your family may just be unsure of how to approach you now that you've had surgery and they're not going to know how you're feeling unless you speak of it. Let them know what's going on, that you're finally free of that horrible pain but you could use a little support. There is nothing wrong with asking for that even though it can sometimes be the hardest thing in the world. I know I found my MVD easier than asking my husband for help post op but sometimes we have to do what's best for us, even if it is different from our norm. Just try to focus on the fact that you are finally getting some relief from the pain and share that good news with your family. It's something you should be proud of and want to share! Lord knows you went down a long, rough road to get to that point!
Good luck,
Mojo
It will probably take them time to get back to "normal" with you just as it's taking you time to get back to normal. You may need to talk to a therapist. You may have some PTSD going on from all of the pain you've endured. Give it time. ((((((((((HUGS))))))))))))
I feel the same as you do, we all do. I had the MVD , the pain went away, then boom, I am dealing with another neurological disorder. Many people dont even believe me anymore, including family members. All my old friends are gone. but you know what? They werent my friends to begin with, if they had been, they would still be here.
You cant change family, you can change your friends!! Once I am up and about again, I plan on getting back to work and taking some classes at night . I will make new friends!! You will too.
Life changes and sometimes we have to change our surroundings to make it work!
I also agree with KC, long before all this, I had some very negative people in my life, I dumped them all and am glad I did because they would have made all this worse. If people make you feel worse, you need to divorce them ,lol
Wendy