Do I Belong Here?

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1

That's the question I've been asking myself since I found this site yesterday.

It sounds like a stupid question with an extremely easy answer - of course I belong here, I have well-diagnosed TN.

I don't think it's really that simple though. Yes, I definitely have TN, and I've had it for over a decade now. I've a had wonderful remission, but it seems to have come to an end for the present. But should I be here, or any discussion/support group just because I have the same disease as the other participants?

A huge part of me wants to reach out to other people who can actually understand the pain, the tiredness from the drugs, the frustration of trying to live a life that will be marginal at best for a time. People who understand why I'm scared of silverware, drink Mountain Dew at room temperature instead of ice cold, and have to plan every minute of my day around a "what if" situation that nobody else can even see.

But that connection scares me. I'm used to just shutting up and dealing with it while I try to get on the best I can (which isn't very impressive some days.) What if I lose the ability to cope because I start comparing notes and commiserating with others?

Several years ago I had a discussion with my family about the possibility of suicide (this was before we finally found an effective treatment plan.) We're pretty open and discuss even the most morbid thoughts. We decided that the best thing to do was to keep trying, but left open the possibility that I could "check out" early if necessary. Knowing that I had that much support, even for a normally unthinkable choice, has actually given me the strength to not be disabled by this pain. If I have to, I can, and the people I care about will understand.

The hold I have is tenuous sometimes, but my life is MINE. The pain doesn't get to own it or control it. But I am scared that reaching out and acknowledging it will let it get a toe in the door and try to claim ownership again. Right now I'm tired, and I'm frightened, but I'm not hopeless because I can cope.

Like my fear of having my face touched because it may cause pain, I'm frightened of having my life touched because I don't ever want to feel suicidal again. I hope I'm making the right decision as I try to make contact with others because I know the reward of feeling a tender touch to the face that doesn't cause pain.

2

(((((( Tina )))))),
Belonging to an online Support Group is such a personal choice.
We can choose how we want to participate, some just read, some just post updated medical research, some really interact, some just want to support, some just want a safe place to whine where people who understand can relate and commiserate or offer comfort.
I understand exactly what you’re saying though…
Maybe baby steps is the answer, giving you a chance to feel it out and see how you feel?
For me, I have been pretty much on house arrest ( my attempt at humor) for almost a year… Due to vertigo/ imbalance and more recently this spring a TN relapse that just won’t be managed by meds …yet!
So for me, it’s a way to connect, feel a part of something, it makes me feel like I’m contributing something when I can offer support, encouragement or a hug. It also gives me info, support, insight to how others are affected, tips on coping etc etc

I hope you stick around, as I feel you have a lot to contribute, however, if I don’t see you for awhile I’ll understand and know that you’re just taking care of you.
You have a knack for writing by the way, I appreciate your honesty, fear, and can hear your strength through your words. Thanks for sharing your feelings…
Hope your pain stays away and allows you to enjoy another remission soon!
(( hugs )) Mimi

3

I enjoyed reading this, as there was so much honesty in the writing. whatever you decide i wish you well, what a loving family you have xx

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Thank you for sharing your thoughts Tina.

Peace, Min

5

This nearly brought me to tears. (but i’m sitting in my office at work so I had to hold them back) I so understand your pain, and how difficult it is to face this thing on some days. I do hope you can stay. Amazing things can happen when we allow folks to help us and face our fears with the support of others. I am thankful that your family is loving enough try and understand you and I am thankful that you have found an effective treatment. I believe it takes a brave person to share their thoughts with others and it has been my experience that it is a relief when I find the brevity to do so. hugs

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P.S. Never understimate the amount that you help others by simply sharing your pain with them. When someone shares their pain with me…it give me permission to admit I hurt too. I’ll be forever indebted to those folks that honestly shared with me.

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Well said Ash.

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Thank you all for your kind words.

That sounds like something we all just say, but I really appreciate your kindness. I'm glad to hear that taking part in a community is helpful to others, it gives me courage to try it out as well.

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I hope that by reading our words Tina, it can be a support to you, just as your words were a support to all of us. I look forward to hearing from you again xx

10

Your writing is amazing, and gets to the point in such eloquent words of what everyone on here has felt at one time or another.

I also questioned weather I would be able to cope with all the information on here, and when I was getting ready to have my MVD I stayed away right before it. I didnt want any negative vibes to either scare me or make me feel like it was going to be a waste of time. I can only say I was amazed at how many people that knew I had the surgery checked in on me and really cared what happened. I have made some friends on here that I chat with from time to time by phone. This site is a godsend, plain and simple. But on the flip side it can be scary here and the only advise I can give you is stay, but if it is too much, go away for a time, but check in with everyone when you can. There are days I have to get away, especially when I am feeling good, just so I can feel normal again,

You are an amazing writer,.....thanks for posting

Wendy

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I also took a breathing space for a while and when I came back I remember Jackie remembering me and welcoming me back again, no questions asked or explanations required, come and go as you wish, you will always be welcome

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Hi Tina, Hope you're hanging in there! You posted over a week ago. So this is a sort of follow up... people are still thinking of you and caring.

( Your comments about "checking out"... I have an "exit strategy" - it has given me a great peace of mind knowing I have it. It really surprised me how just having it, set my mind at rest. Like yourself I won't let it come to that. Like you every day is a battle... this post is not meant to be about me... except that I care and your post helps me ).