I want that button.
Sue,
How about a button that says: "I have Trigeminal Neuralgia. You won't understand." Or, "I have Trigeminal Neuralgia. I won't always feel well so give me a break."
Sue Richey said:
Had a friend say to me the other day "you've been sick as long as I've know you." My husband said "you're always sick". What am I supposed to say? It's true! I had bad back problems, then intestional problems, then TN. I'm doing my best not to complain but sometimes I have to cancel things when my eyes are burning really bad. THIS ISN'T SICK LIKE HAVING A COLD OR A HEADACHE. It's chronic and rare and painful. If it nothing they can see, it must not exist. "?What do you mean you can't watch the fireworks? Can't you put on sunglasses or something?" I'm worn out with trying to explain. Can we all wear a button?
How about one that says "Don't f*ck with me or maybe Ill just make you feel what I feel all the friggin time"...OK maybe that's an over-reaction but that's what goes on in my head ;-D We are all friends here right???
We should really make a TN Survivor team/group or something, b/c WE are the survivors
Brad said:
Sue,
How about a button that says: "I have Trigeminal Neuralgia. You won't understand." Or, "I have Trigeminal Neuralgia. I won't always feel well so give me a break."
Sue Richey said:Had a friend say to me the other day "you've been sick as long as I've know you." My husband said "you're always sick". What am I supposed to say? It's true! I had bad back problems, then intestional problems, then TN. I'm doing my best not to complain but sometimes I have to cancel things when my eyes are burning really bad. THIS ISN'T SICK LIKE HAVING A COLD OR A HEADACHE. It's chronic and rare and painful. If it nothing they can see, it must not exist. "?What do you mean you can't watch the fireworks? Can't you put on sunglasses or something?" I'm worn out with trying to explain. Can we all wear a button?
I might have someone make one up for me. If I do, I should post for everyone where they could get one. I bet they would get lots of orders.
Dana Nelson McCullah said:
I want that button.
I want the button to say "Yes, there are worse things than waiting in line at the post office!"
I have TN - but TN does NOT have me!!!!
Or
I have TN - but I am not Just a TN patient -
I am so much more than my TN ! I will not let it define me.
...a pin - a tee shirt - a bumper sticker - a bracelet...
ANYTHING to help with NOT having to explain all the time that "I know I made plans with you, but THIS happened again and I just can't!"
I have the hardest time trying to explain WHAT this is and HOW it is...people say to me "you feeling better now, are you over it yet?"... REALLY. How do you explain to someone that has severe arthritis or fibro or some other painful problem that you are in such pain you simply CAN'T function and you don't have any control and it IS bad! Then they give me that blank stare...if you know of what to say in 10 sentences or less that can explain THIS p-l-e-a-s-e share!!
I am different from the old me - I had so much more confidence in my decisions and could actually remember things...LOTS of things! Now...well, you all know.
I totally understand the whole explaining AGAIN that you can't attend a movie, play, event etc. One of my longest dearest friends just ripped me a new one via email saying that she felt it was 'JUST HER" that I was ignoring/cancelling things etc. Like EVERYONE has said please please live one day in my shoes. I PROMISE you I have NOT gone a DAY w/o pain since DEC!!! NOT ONE DAY! I sometimes cry when I wake up b/c I know here goes another day of suffering and then to have to go to work and TALK the minute I get there to patients and put on a happy face is worthy of an Oscar (in my opinon). The way I treat my mother and husband has changed so much. I am short, impatient, and just not pleasant to be around sometimes. I APOLOGIZE but I think they are just as tired of hearing it as I am of saying it. So ANY button, saying, idea I will take!
Judy
Wow! With 284 views of your discussion, this must be a subject that hits everyone. I found this pic that I wish I could show people who compare the old me to the new me. (see more below pic).
Pain changes people. In some ways bad, in some ways good. Pain is like a speed course to learning the virtues that make us all better human beings, such as compassion, not to take the good times for granted, courage, endurance; and we learn what's truly important in life and what isn't. We become much deeper, less shallow.Many of us learn faith, because God is the only help we have, and sometimes our only companion through this pain. We often lean on the many comforting verses offered to us through Holy books. If we used to be partiers that only cared about our image, and if those are the type of people that were our friends, our whole circle of friends may change. That's not always bad though. If friends walk away from you because you are now suffering, they are not a true friend. So we also learn who our true friends are, and develop deeper and better quality friendships, rather than quantities of friends. For those in your immediate family, your pain teaches them as well. It teaches them deep lessons that can not be learned in any other way but through pain or seeing a loved one in pain.
Pain strips away all the fakeness, so what people see is what they get. We no longer have the strength to put on acts, worry only about our image, or try to be someone we're not. We mourn for the person we hoped to become, and the person we used to be. They mourn for that person too. I often wonder if they would say this stuff to an elderly person who has lost the abilities he/she used to have. People change. I think the social part of chronic pain is just as tough as the physical part, but more heartbreaking.
I have learned that we have to be careful to not thrash out at people and hurt them due to our pain. It's easy to be irritable and angry and take it out on others. That destroys relationships and can be forever damaging to people. I guess we have to also learn new social skills when dealing with people's stupid comments to us. They just don't know what to say, and we are often extra sensitive.
You're sure not alone on this issue. It does get easier to deal with it, like anything you deal with again and again.
Best wishes, Sheila
Wow Shiela you hit the nail on the head about the social part, it is heartbreaking, but you do find out who your friends are. One of the things that has been bugging me is my appearance. I always wear designer clothes, they are my thing, and in the past I worked hard and bought what I could, guess you could call it an addiction of sorts..oh the shoes..but I digress , it really bugs me now that I dont go out, and when I do on those few times I feel ok, I dont look the same or give a rats ass about my appearance. I cant remember the last time I had my hair done or nails/pedicure, and it drives me nuts. I long for the days of shoe shopping and actually caring what I looked like. The good friends have noticed and realized that I am in pain, the others, well f-them, they werent my friends to begin with now were they?
Oh I hear you there! I used to be a model, and now with multiple serious conditions, I barely have the strength to get dressed, much less choose a high-fashion-highly painful outfit. It's frustrating to go out, knowing you don't look your best, but you do't have the strength or ambition to dress to the 9's everyday. That's one of the things I mean about this taking all the fakeness out of us. What you see is what you get. We don't have the strength to put on acts or spend 2 hours on our appearance each day. I moved from Canada to the States for 20 years, then moved back when hubby abandoned me after my third E.R. visit with TN. (20 year marriage that I thought was a storybook marriage.) I was soon going to be homeless, too sick to work, and no help from hubby, so I had to choose homelessness while sick and I had 2 broken ankles at the time, or to move back to Canada to a bedroom in my parents home so I could help them and they could help me. So now I'm in my hometown, and totally ashamed/scared to look up any old friends, knowing the disappointing looks I will get just because I can't keep up appearances anymore.
Good Lord Sheila, you have been through the ringer. I used to do some modeling as well in my much younger days, then I got thyroid disease and gained a ton of weight, took the weight off last year, because I finally got a good doctor, now I gained 10 back from the Lyrica...grr.
As for being ashamed, dont care about that, if they dont see you for who you are, well f-them, thats my theory!!
Wendy
Wendy, I have hypothyroid too. So frustrating to gain weight and know that it was not something you did, and was is not easily gotten rid of, like in healthier people. Did you know hypothyroid can be one of the causes? Did we discuss this in another discussion? My grandmother, mother, and I all got diagnosed with hypothyroid shortly before out TN started, because it can cause nerve pain. Yeah, you're right about those who don't accept you.
I wanna say not exactly, but truth is yes totally...They will talk about what I used to do...Changing isn't really in my control. Things go downhill health-wise so fast... We can only do what we are able to do. We can't force ourselves to go back into our old selves. If we could, we would have already done it.. Just too painful of a thing to even attempt to do. One of the reasons why it is so important for me to take the time to grieve that old me. That part of me has died. I can't force myself to take a bath when it'll send me into a tn flare. I can't force myself to go to a concert, and royally destroy myself in the process. I can't do any of the things that are gonna trigger any kind of attack (fibro or tn). I have to make my choices carefully. And, I have to be able to make the best of what I am given now and get myself emotionally fit to deal with this stuff...
I know that people are thinking that, even if they aren't saying it. I have to confess - I miss the old me too! The old me was full of adventure and rarely let things bother her. The new me is much more cautious, has very developed insecurities and feels a bit like Chicken Little. Has anyone else been through this? I thought it might be my meds, but everything I have read says they could be used to treat anxiety - not cause it. I am fearful of driving at night, or on the highway. I worry about my kids and grandkids even more than I did before. I worry that my husband will leave me. Anyone else dealing with this?
Yes, there are big physical changes, but the mental and emotional changes are bothering me more than the physical. I miss the old me too!
SandraR,
It's a known fact that constant severe pain wears on the nervous system. It makes a person hypersensitive to everything, physically and emotionally. So this is not just a weakness, this is a physically caused condition.
Hi, Albee — Each day we are growing into a “better” version of our formal selves. It is painful at times when we look at the magnitude of our loss. Life always sends a rainbow after the rain has past…a reminder we are not in this journey alone.
When the pain hits, we have to be selfish and care for ourselves…but I’ve found that I can love others better now BECAUSE I have taken care of myself when the pain is speaking. Before TN, I would just ignore the setbacks, now I listen up and care for myself well.
I do miss my past, care free, spontanious self…but I am appreciating who I am becoming through this brutal TN experience. There are many who stand in the truth that their illness will NOT define them, but will inspire them to reach down and pull out the very best in themselves. Many times I find myself in tears for what I cannot do anymore…I seem to be dying daily. This is definitely a marathon and we must grow our resiliance for the long hall. It’s funny how I had taken my health for granted prior to TN…now I am greatful for each moment I am alive and find joy doing my best with what I’ve been dealt.
I see a great strength in my fellow TN warriors here and glean so much needed comaraderie from everyone on this site. So in a way, our new self is a much stronger and wiser version of our old self.
Take good care, Albee 
I think about the things I used to do and the things that I now do. I call them, "Before TN" and "After TN". I am angry about how my life has changed and sometimes I am very sad and feel so all alone. Sometimes, when I am alone, I will quietly cry about how my life has changed. If I share my feelings with my significant other, he listens but he really cannot understand. Also, I think he is uncomfortable because he doesn't know what to say---he can't "fix it". I have been affected only for about 1 year & am not dealing with it the best I could. I suppose I should "keep a stiff upper lip", and get on with my life. But, you know what I think I may be doing? I think I may be grieving for the woman who I once was and until I can let that go, I will continue my anger and sadness. I need some help to get over my loss. I'm sorry that this is not a very upbeat, happy sounding message, but it is Me.
Thanks for listening.
I went out to lunch for the first time in months the other day, my friends couldnt understand why I was so quiet and not as funny as my usual self. After about a 100 questions, I gave up trying to describe any of it, they dont get it and kept asking, when will I get better!! I was ready to explode by the end of the day. To say it was like pulling teeth talking to everyone is an understatement. I was out on the Chesapeake, and when I went out on the docks, I damn near fell off I got so dizzy!! I used to have a boat and never had issues with the water, now I cant even walk on a dock, are you freaking kidding me? My friends teased me that I looked drunk, it wasnt appreciated. I know they wont get it, I give up trying to explain. Before I would have had a few drinks, gotten on the boats and been the life of the party..now I just am. I am still trying to find help for this or at least a medication that works, but every day I lose my will. I guess my point is, it just is and you cant change peoples perception or make them understand, until you have something like this, its just out of your realm of thinking.
Wendy
Brad you made me laugh..