Has he gotten involved with the TN online community? He probably has tons of questions that he has hardly been able to conceptualize for himself, as he feels powerless to help you.
I think Kim is right to suggest that he may be going through the same stages, and powerlessness is a terrible state to live in.
He loves you. It must be crushing to see you so overwhelmed with pain. Not that you should “buck up”! You need to be able to be yourself. But he may need the insight and experience of others who have loved ones experiencing the same.
Just my perspective- throw out any of it that doesn’t work for you!
I think there's some truth to the observation that healthy anger is Mother Nature's way of telling us that it's time to change something RIGHT NOW. We can also deflect anger by doing something different. But both deflection and transformation might ultimately amount to the same thing: change which empowers us.
The place where I might get off the trolley, so to speak, is with any form of anger that becomes chronic, internalized against ourselves or externalized against others whom we perceive to be its proper objects, AND unchanging. That's the kind of anger that emerges in chronic depression, and it's again an alarm bell that we need to change something.
The sad part is how tn effects us on so many levels in our daily lives . We must becareful . Especially those of us who have children . Tn can victimize them too. Because when tn takes us down . We are down . So in our "better days " rush . We might want to stop and smell the roses with them.
Oh Kim, You understand my heart. My kids have and continue to pay a very high price. People don't understand. thanks for putting into words my thoughts! hugs~~
I really like the comment that these stages apply to our closest loved ones because they feel it too. I have never thought about that before...But its true, when the pain got to bad, I would always call my mom and I never looked at it this way until now but she also has lost the old daughter she once knew and has to grieve as well. I will be a bit more compassionate to her after reading this.. Thanks KC dancer :)
Hi all. I think that grieving the loss of my life as it used to be is absolutely normal. It WAS a good, healthy, active life. Untouched by medications that present detriments to a “normal” life in and of themselves! And pain, pain,pain…all the time despite the meds IS depressing. The most depressing thing I heard recently was from Dr. Ken Casey’s seminar video posted somewhere on this site. He was so great, funny, informative, passionate about helping people like us… But he was also honest. At the end of his presentation, he cited the fact that he did an anonymous “survey” of neurologists/neurosurgeons at one of his seminars. He asked how many of them WANTED to treat “FACIAL PAIN PATIENTS”. I think the answer was 1-1.5%!!! THAT’S DEPRESSING!! Loading us up on meds with serious side effects and pain meds with dependency issues is the norm. Sometimes I wonder if it’s the easy way out for those 99% of Drs who DON’T WANT TO TREAT FACE PAIN PATIENTS! It’s scary. But this site is invaluable for SELF-EMPOWERMENT. Finding out about alternative treatments for those, like me, who aren’t candidates for surgery. So, I guess my point is sometimes those stages of “grieving” can also be all jumbled together at times. But HOPE has to be our prevailing emotion - for remission, for a few pain-free days, for milder pain so we can enjoy some of our “old life activities”, FOR A CURE SOMEDAY!!
My boyfriend is in the depression stage… he doesnt care about anything. … he is pushing me away… I know this isn’t him…I know its the pain and the meds… he tried to break up with me… insisted I deserve better… insisted I find a man who isnt sick. I tend to be quiet during this stage…be there but not talk to much… I let him know I love him and im not going anywhere. . But he continues to try his hardest to push me away…
Its nice to read from the sufferers point of view… im a caregiver, my boyfriend has tn and wont tell me whats going on in his head… his thoughts, his feelings…he just wants to be left alone literally. …so I learn from all of you so I can better understand and try and help. Its hard when the one you love wants nothing to do with you… I am a sensative person and had to train my brain to believe its not me… hes not pissed at me…so when he walks past me like he doesnt know me… or no longer says I love you…I silently swear to myself… grit my teeth. … bite my tongue and come here to calm down…you have no idea how helpful you all are.
Sometimes we have to remind others that TN /procedures/meds --- come with losses,
loss of job, freedom, self-esteem, memory, relationships, sanity!!!! etc
grief and loss are tied together for us, but the goal for me is to remind myself of what I do have, and that it makes me feel better about myself, if I can help others.
This is a great discussion, and I'll encourage the mod team to give it a place of importance when we move to the new format. The cool thing about this is every Ben's Friends site has a similar discussion; one thing that unites all chronic disease patients is their grief. We all have to adjust to our new normal and the loss of our old lives makes us really sad. It can be hard to adjust to that loss of self and identity. I know I struggled with this loss. I used to be the mighty outdoor woman! My first job was as a ranch hand and my second was on a trail crew for a state park, and now I can barely survive car camping with the cub scouts, and pay for the next week for my attempt. The sense of loss was something that I had never really thought about experiencing. I found I was feeling really sorry for myself, and feeling that it wasn' fair. I had only just gotten everything figured out and had only just married my wonderful husband, and only just gotten the job that I loved. Why? Why me? I don't deserve this.
It took a while, but I was finally able to get over myself and my grief. Life really isn't fair. I am not owed a wonderful life by the cosmos. What i can do is let go of all of that pain and hurt and self-rightous anger, and resentment and LIVE. I live as much as my body will allow, and let the rest of it go. I have gotten to experience a lot in my life and have all of these wonderful memories to warm my heart.
I hope everyone is able to find their own form of peace with their illness.
