Just wondering if anyone else gets told by people that don't understand that you will be better and you shouldn't be so negative when you know that the pain is either a) coming back or b) will come back.
I've accepted the situation and am trying to make the best of it. The TN pain is gone, but the TN type 2 pain is here and I've accepted that I might have to deal with pain for a long time as that is my coping strategy. However, it really annoys me when people tell me to stop being negative when I say that it will come back or it is coming back etc. I'm actually not being negative, I'm just being realistic and I'd rather be realistic rather than try to deal with something that I'm in denial about. Has anyone else experienced this?
Absolutely. Along with other comments like "maybe you think about it too much and that makes your pain worse", "maybe it's just in your head", "nerves heal, this is a temporary thing you have, from now on you will only be better" and so on. Comments like that used to upset me quite a bit, now I just think ...yeah right, of course you know better! ...and don´t really let them bother me much. People don´t know how to react or what to say to us and sometimes this is the best they can do to show they listen and care. Who knows, maybe I´d be the same had I not been through the hell of this disease...
It is difficult because no one, and I mean no one, other then a person with TN can understand the pain and desperation caused by this illness. I dont think people are trying to be mean I think they dont undestand and I can get that. You know the reality of TN and we have all been through it or going through it.. The best place for support is here or others with TN. I had it for 8 years and onlt my wife who was with me day in and day out had any clue of what I was going through and to this day it took a greater toll on her then it did on me. Hang in there and dont concern yourself with statements from others really dont know anything about what you are enduring. Enjoy a pain free day today.
Yes! ..especially with my father (who is 72). He wants to just pat me on the shoulder and say it'll get better, and when i say no dad, it probably won't, he acts like i'm being a cry baby. I also get it at work a lot. People ask when i'm going to get "that" taken care of and when i try to explain that it's probably going to be long term pain, i actually get the "don't be so negative" talk from some of them.
At first, it really hurt my feelings and annoyed me that neither my dad, nor others would (could?) understand that, like you, i am just trying to be honest with myself and deal with it with open eyes. Eventually, however, i came to realize that most people really don't want to hear about it, for real. *shrugs* So with my dad, i just nod my head and say you're probably right, daddy....and move on. With people at work, ...well, i'm not at work on the bad days, so when i am at work and they ask about it, i just say that i'm having a good day today, thanks for asking.. and go about my work.
The people i really need to understand...already do. My husband and my best friend both know how truely horrible this is and how it is probably a long term, if not permenant, condition. Plus, i have you guys too!
So...I'd say it's better for you to keep on being realistic about your TN. As for people who think you're just being negative, just let them be. They can't help it. You can't hold them accountable for not knowing how bad it is...and you can't force them to believe you. A simple, "thank you for your concern." and walking away works for me....
It is difficult because no one, and I mean no one, other then a person with TN can understand the pain and desperation caused by this illness. I dont think people are trying to be mean I think they dont undestand and I can get that. You know the reality of TN and we have all been through it or going through it.. The best place for support is here or others with TN. I had it for 8 years and onlt my wife who was with me day in and day out had any clue of what I was going through and to this day it took a greater toll on her then it did on me. Hang in there and dont concern yourself with statements from others really dont know anything about what you are enduring. Enjoy a pain free day today.
Thank you everyone. I find it very irritating the way that people think. Sometimes it feels as if having TN is being part of an exclusive club where the only people that understand are the people who have it and the odd doctor. Trying to have a pain free day but those days are so few and far between.
Thanks for understanding.
Hang in there, Marcie, it is hard, but don't let others effect how you feel. We all have to deal with this stupid TN and being real is the best way. The pain is so very real and I agree, so many can't understand because there is nothing to see. I have mentioned many times, my hubby is disabled in a wheelchair, leg amputated, he gets lots of understanding, well deserved, but on bad pain days it is hard for me to be caretaker and watch him get all the care, those are my negative times. But as fast as I fall I get myself back up, yes the pain is something to deal with daily, I so appreciate my good days. Today is not one of them, but things to do and blessed my hubby does truly understand. And we all have each other here! Going to escape to the garden, pain or not, going to go enjoy planting some flowers and some sunshine! Take care, be kind to yourself.
It pisses me off. I am changing my expectations because even good friends and colleagues who care have a hard time dealing with my pain day in and day out. I try to turn it around really quickly off of me and onto them because it only makes things worse if I tell them that it feels like they are pulling my molars out with a giant pair of pliars. They probably don’t really want to know all the gory details (and we know how gory they can be) and if they did know the details they wouldn’t know what to do with the info. Sometimes I smile, sometimes I say “fine” even though that is not the case. Sometimes I wish I could put a giant sign on my front that says “Thanks for caring now leave me the heck alone”. Sorry, Marcie, you have a right to be negative, a lot of crap has been dumped on your head. We are your friends, so be as negative as you wish, we all are at times. Take care, TL
I do know how you feel. I often feel the same. My own husband of 47 yrs. doesn't understand it. I don't think he even tries. After 13 yrs. of me in pain, I think he thinks I'm just being a baby about the pain. I had MVD 3 yrs. ago and now I suffer worse with AD. I wouldn't have had the MVD if I had known I would have ended up like this. At least with the TN I could keep trying different meds and get by. Now, it never ends and there is no medication. Today has been an awful day for me. I have hidden in my bedroom with the shades pulled and laid on a hot pad for as long as I could. Finally got up about an hour ago and made me some soup. Only thing I can eat these days. I printed 17 pages of directions for the mirror therapy that seems to help and he is not interested in helping. I don't have anyone else to ask. So I'll just go on living my life being miserable and live in a dark room. Feeling sorry for myself, yes I am. My grown children don't have any clue either because I do a good job of hiding it because I don't think care. Good luck to you. It is a terrible curse we all share.
I certainly tried both. Only cost me plenty because medicare insurance wouldn't pay for them. Neither one worked. After so long one just plain gets worn out with the pain and anogy when it seems like no one cares. I'm sure others have family that are a little more sensitive then mind. It's just a hard road to travel.
Kc Dancer Kc said:
I wish lidocaine patches and lidocaine mouthwash worked for everrrrrrybody! Damn. I'm assuming you all have tried that!?
I was informed just the other day that the pain is in my head and that I'm making it up. This was by a family member and I know that he doesn't know what the hell he's talking about, but it still pissed me off.
I don't want pity for what is happening, I just want understanding. If I don't feel well, then I don't feel well. If I want to lock myself away for a time, then that is my choice. It's either that, or watch me cry constantly and be quite irritable.
I'm off to see a maxillofacial consultant in a few weeks. Not even sure what I think about this as it just seems like i'm being passed around as noone knows what to do with me, but so far noone will listen to me. I try to stay positive, but sometimes it's extremely hard, but I know for my own sanity that I have to.
Feeling very frustrated and in pain today. The weather's changing (slightly cooler and there's a breeze) and this is making my face hurt even more. So fed up! :-(
Went to see an optician yesterday and I had to tell her about my TN as I find it difficult to wear glasses as well as most contact lenses. She asked me if I take medication and I told her what I take. She said: "Don't you think you are cracking a nut with a sledgehammer?"
That is awful Deanna! It is the kind of comment that, afterwards I can come up with all sorts of wonderful things to say, but at the time I am so shocked that I have problems picking my mouth up off the floor. It is also exactly what we all go through...and the stress of having to hear it makes the TN worse!!