After unsuccessful MVD and SRS procedures and my high intolerance to medications, I've realized that in all likely hood this is something I'm just going to have to live with. Fortunately for me, I've been a migraine sufferer since I was a child so have experience in the area. Strangely since I've had TN, my migraines have subsided and after the MVD I am no longer the biggest Klutz I know. I mean, I tripped over my own shadow at least 3 times a day before surgery and haven't tripped once since having it. Isn't that a hoot. My neurosurgeon said he's happy to take all the credit for that and I'll give it to him:).
Anyway, the hardest thing I've had to deal with is all of the concerned looks and questions from family and friends. My goal is to try not to think about it and just keep moving forward. So I sent my friends and family the following letter:
Dear Family and Friends,
For almost a year now I have been experiencing a lot of pain from a condition eventually diagnosed as Trigeminal Neuralgia. Yep, I'm one of the lucky 15 out of 100,000 people who suffer from this painful nerve condition that feels like someone slices your cheek open and sticks a live wire into the cut about 20-100 times a day. You don't know when it will it. There is no discernible trigger. It just happens. Yes it hurts, but it hurts in more ways then just the actual pain I experience because it affects more than just my face. It affects the people around me who love and care about me, and knowing that hurts almost more then the actual pain itself.
I've spent a lot of time thinking about how to deal with the condition, seeing doctors, trying various procedures hoping for a cure without success so far. Don't get me wrong, I'm not giving up. Giving up is not part of my game plan, but living a happy life regardless of pain is and I know I can do this. But, I need your help.
I would like to ask you to do a couple of things for me.
1. Don't ask me how I feel, or if I'm any better, or if I'm currently in pain. The answers to the questions are probably not good, no and yes. You don't need to know this, and you knowing it doesn't make me feel better it only reminds me of the pain and makes you feel bad for me. I don't want you to feel bad for me and I don't want to feel bad for myself.
2. Know that if I am too much pain to handle, I will let you know. If I don't feel well enough to do something I will let you know and won't. Most of all know that, I know you all love and care about me and that goes a long way toward making the pain I experience tolerable overall.
I know with the help and support of my friends and family I can do anything and beating this is one of them. I love you all and want to thank you for your help.
I love your note and never even thought of doing that with my friends and family. That is an awesome idea and if you do not mind I am going to borrow your idea.
I do wish you luck in future treatment and I hate when people ask how do you feel when you feel like your head is going to explode from all the pain flowing through it. I just want to tell them I am still me inside this doped up person that looks like me.
I love your note and never even thought of doing that with my friends and family. That is an awesome idea and if you do not mind I am going to borrow your idea.
I do wish you luck in future treatment and I hate when people ask how do you feel when you feel like your head is going to explode from all the pain flowing through it. I just want to tell them I am still me inside this doped up person that looks like me.
hey girl thats beautiful letter !! will am sorry but one thing about us we know what you going threw sweetie !!
i pray for everyone one this group , i know what you mean about how you feel
but thats all they can say but, all i know i just take it day by day i rub my neck that helps me
and hot rag but, i do get scared when i wake up in the morning , if the pain going to be there (attack monster )
but like i say thanks to ours sisters and brothers here on living group i have a video so family and friends know what we all going threw and is no joke we not crazy i cry and pray god bless!!!
Thanks Sally. You're right about you guys knowing what I'm going through.
Gretchen
sally choate said:
hey girl thats beautiful letter !! will am sorry but one thing about us we know what you going threw sweetie !!
i pray for everyone one this group , i know what you mean about how you feel
but thats all they can say but, all i know i just take it day by day i rub my neck that helps me
and hot rag but, i do get scared when i wake up in the morning , if the pain going to be there (attack monster )
but like i say thanks to ours sisters and brothers here on living group i have a video so family and friends know what we all going threw and is no joke we not crazy i cry and pray god bless!!!
I loved your letter also Gretchen, I wrote my daughter a letter just a few days ago haven't. given it to her let it mainly to tell what an awesome women she has become and she has given me 2 wonderful grandkids her oldest has lived with me most of his life he is now 15 her life was not easy growing up but she has put that all aside and has helped me when I am unable to help myself she does all of my shopping and when I am unable to do my own housework
i'm sorry my mom just came in bringing me things I guest you would call them comfort foods they help with my upset stomach she also has helped me VERY VERY MUCH!!!!!! she is 86 she has done more for me then anyone the tables should be turned I should be helping her my daughter also helps my mom when she needs it. hugs and prayers going out to all have a pain free day!!!
Gretchen, good luck with that. Hope it helps, really do. I hope you don't have the kind of family I have - my husband excluded - and my youngest "child". My kids don't want to hear about it and my extended family have abandoned me completely. My once close friends have done ditto. They would rather go shopping at the mall. In the 8 years I have been housebound, only two "friends" have visited me - one time each and that was when they needed counselling. I need it more than they do!
I have abandoned all hope of them ever understanding!
That’s a lovely letter Gretchen, I am sure your family and friends will appreciate the sentiment.
It can be so hard for families, my mum is 87 and she constantly worries about me. I try to keep her out of the loop sometimes just so she doesn’t have to be so close to my pain and strguggles.
I am very blessed with a family that wants to take care of me but sometimes I just don’t want to focus on my pain.
Best wishes to you and all the people in your life that love and support you.
What a lovely idea! I really liked your letter and think it is a positive step. It is great that you are letting those you care about know how you feel because many times they want to help but don't know how to go about doing that.
Thanks for a really positive step - important for all of us out there.
I too loved your post, especially the letter. It echoed my own sentiments exactly & is such a positive step forward. :-)
I usually hate myself when I see the concern looks & worry on the faces of my husband & 2 children. Very few of my extended family or friends actually know or understand very much about TGN as I have become a reclusive shut-in because of this horrible disease, I only leave my house when I really have to, for medical appointments, etc. I desperately want to fight it but whilst enduring the spasms in private is hard, it's worse in public, especially when well-meaning strangers rush to help, I hate that I find it so humiliating when they're only trying to help & be nice...I have managed to train myself to minimise my reactions to the pain when I can, but I really want to be able to get back to my normally hectic lifestyle.
Maybe when I'm confidant enough in my ability to mask as much of my pain as possible, I will be able to use this idea to help my family & friends adjust to what seems to be the inevitability of my life,
Getchen, SORRY!!!!!! Owe you a big apology. My reponse was unnecessary and harsh. Your letter was beautiful and well thought out. I am sure your family will respond in a good way and that you will be happy with the way they support way. I re-read my response and have been unable to sleep thinking about it. I wish I could take it back!!! I am not usually to callous and uncaring. Please accept my sincerest aplogies.
Of course we understand how you felt, we are the people that actually know your pain.
Sadly, we all share a horrible bond and yet out of all that anguish here we are, a group of people that supports and cares for each other both when we have success and when things are not going well.
Mimi is right, this is the place to post how you really feel. This is the place where you don’t have to pretend that everything is fine…when it isn’t.
I am so sorry that things have been difficult for you.
I’m new to the group the letter is perfect I’m fed up being told what I can do and can’t do by my over protective husband with a heart of gold but just doesn’t get why I can’t give in to this illness it’s so so good to know you have a group of people that understand xx your letters perfect and such a great idea xxx