I'm so tired of doing this endless dance with pain. I'm so tired I don't want to be here any more. I have been thinking of the long list of medications in my cabinet and wondering if I take them all will it end? I don't normally think this way but it seems I'm useless to everyone and have only become a big burden to all around me. I have tried for so long to keep going but now I am just so tired.
My doctor added the diagnosis of fibromyalgia to the TN and GN and now I feel there is nothing I can do most days but sit here and take up space. When the pain from the TN and GN are better I try to do simple things like dust of sweep and it feels like all the muscles in my body tighten and hurt thanks to the fibromyalgia.
I went on a long trip to the beach this weekend and spent all the time in the car or in the room. I want to be active and enjoy life but that is not happening. My husband and I got into a huge argument on the way home because he says I keep him from doing things. He is gone all the time between work, fishing, kayaking, visiting family and friends. What else could he squeeze in? I know I am just a burden to him now and that hurts even more.
Does anyway else feel this way and have these thoughts?
Oh, Virginia Girl I don't know what to do for you!!!! I'm sitting here reading this a long, long way away from you and my heart is breaking for you! I want to come to where ever you are and (((((hug))))) you. Please, please don't ever feel that you're just taking up space. Every tiny piece of space you take up is precious and valuable and priceless. You have to hang in there and hang tough!! Do it for me, your old friend ( i know we've never met but just pretend we have ) and everyone else who loves you.
I want to hear back from you in a couple of days please telling me that you know you can carry on.
My husband has expressed this to me before as well. That he wishes we could do more things together as well. Our lives Have changed and they are not the same. . I would suggest to him maybe getting some help .. some counseling..if he'll do it. There are some articles he can read. I've looked for some good ones on here and shown them to mine.. And they have helped.
Also remember too, that Your loved ones would MISS you terribly!! If something happened to you... and you weren't there.
They DO love you, and would be soooo upset if you weren't here. I know it stinks, and I know it HURTS. But you can't give up , Can't give in to the pain of TN. Don't let it win!!
Go back to your Doctor and see if there is something he can do. Maybe he can add a med, just to take the edge off of the pain.... I have nucynta , for breakthru pain. I am type 2 tho. I don't know which type you are....
Or maybe he can switch your meds. Please, please, please, know you are loved and we ALL want you here and healthy and Fighting the GOOD Fight!!!!
This link is provided in the post in case it won't connect you. I think it is a very good one! And I know it really helped my husband see things from MY point of view...when I couldn't tell him myself..
They spell it out much better than I ,..ever could. LOL
It helps them to see that it's really Not our fault ...and to see what we go thru in Wanting to go out and DO things,, but knowing WE really cannot at times. How hard it really is....:(
oh virginia girl, i really understand what you feel, i was there last week, doing exactly the same thing, i had all my morphine tipped out along with oxcarbazepine and amytriptyline, surely i have enough to knock out a horse let alone me, i was crawling around the floor in agony, my wife decided a good time to go to her hair dressers. not a happy chappy. i had a cuddle with my cat and then went and sat on the floor of the kids bedroom and cried as quietly as i could. this is a horrid condition, and every single day is a god dam awful struggle.
i really feel your pain, so does everyone else on here, please be strong.
you are not useless and taking up space, you are strong, you fight this every day, today is worse than yesterday, tomorrow might be better than any day you can remember.
i spent all the last weekend in bed, i make no excuses to my wife or family anymore, if i feel like crap i tell them and ask that someone takes the kids out for a while or comes around so i can go bed.
you are stong, its understandable to feel like this.
sending you happy thoughts and wishes for a good few days.
x
In your post you write, "I don't normally think this way ..." Read it again and again. You are in a very dark place right now and I understand how you'd want to give in and give up but remember that you "don't normally think this way." To me that means you have days that are better (if only a little bit) than today or yesterday. Of all the people who have tried to kill themselves and failed at it, I have very rarely read that these people tried again. In fact, they deeply regretted that they tried to end their life.
Try to make a list ... actually write down anything that makes you want to stay among the living. Anything. Add to it over the coming days and weeks. Listening to music, reading, watching tv, things you can do that won't make your pain worse.
It sounds like the diagnosis of Fibromyalgia is fairly new. It must have blindsided you. How could you not feel overwhelmed? Now every pain you feel is being defined by you as TN, GN or the fibro. It means you're paying too much attention to your pain and that's not good. Yeah, I know. How can you NOT pay attention to the pain when it consumes you. I get that. And I've felt what you feel though my pain comes for a period of time, then leaves for awhile. I get some relief but the last time I was immersed in the pain and flirted with the idea of killing myself, I immediately thew that notion aside because I have two teen-aged sons who need me and who would be devastated. At the time it seemed like the best decision but that passed and I was horrified that I even considered it.
Please try to love yourself and find your own value because I guarantee you, you possess a great deal of worth. Take a stand against your pain. Don't let it win. Don't give into it. Even if all you can do is lie in bed and grimace in pain, create small goals for yourself ,,, "In ten minutes I'm going to get up and do something for ten minutes, then I can go back to bed." Set your alarm to remind you to get up. "I'm going to get up and wash my face and comb my hair and put on some make-up even if no one sees me today." Small steps/small goals.
I know I'm blathering on here but I want you to know, Virginia Girl, that you are valuable here. And because we understand what you're going through we want to help. We are family, your family, even though you don't know any of us personally. We want you to live to see another day, then another and another. Please don't give up. Keep us posted here. Make posting be one of the things you will do today.
i am so sad for you Virginia Girl. this is a dark, dark place you are in and i am sorry. the tn journey is very hard. i have tn, occipital neuralgia and also fibromyalgia as well. i understand. i would be crushed to know this had been too much for you and that you left us. please don’t leave; you are important and needed. you are not alone. even when you are sitting alone in the car while your husband does ‘fun’ things you are not alone. every tner is in the car with you. we understand and care. hugs
Virgina girl, I am so sorry you are also in such a dark place.This TN IS HORRIBLE, THE PAIN, THE MEDS., THE DRS., THE DEPRESSION, THE ANIXETY, ECT.How do any of us who are here right now get past all the hopelessness? After 20 some yrs.of this my family is sick of this and know longer want to deal with me unless they feel they have too.I don't think they realize yes, they can walk away anytime they want I CAN NOT IT IS IN MY BODY. I CAN NOT JUST INGORE IT LIKE IT DOES NOT EXIST! OH GIRL!I AM SO SORRY! Sorry that I am not very positive right now.I really don't want to die so even though my right now outcome looks pretty bleak I am still reaching out. Just like last week borris was at his witts ends and untill today I don't. think he said anything about taking too. many pills.He has two little ones. How do we keep from slipping over the edge so to speak? I scare myself at times. Lets just keep coming here we need each other and I want to say we need people like Karen brown beautifully said and very non judgemental.soft hugs, dawn
Virginia girl,
You are so brave to vocalize what so many of us have probably felt at some point. So many of the medications we take cause a roller coaster of emotions themselves and mixed with coming to grips with the person we become because of the pain, well that’s a recipe for disaster. Please talk with your doctor about how you are feeling and discuss if your current medication could be contributing. I understand what you mean about feeling like a burden to your husband but we are more than what others expect us to be. Pain has changed us all but the people we become are still amazing, just a little more reserved and quieter. That’s not bad it lets us appreciate so much more that others don’t treasure. We are all here for you. I hope tomorrow is a little brighter and less painful. Your post hit home for me today and made me feel less alone so thank you. (((( hugs))))
Dizzyowl
It helps so much to feel like people care and understand!
I love you too!
xxoo
catwoman said:
Oh, Virginia Girl I don't know what to do for you!!!! I'm sitting here reading this a long, long way away from you and my heart is breaking for you! I want to come to where ever you are and (((((hug))))) you. Please, please don't ever feel that you're just taking up space. Every tiny piece of space you take up is precious and valuable and priceless. You have to hang in there and hang tough!! Do it for me, your old friend ( i know we've never met but just pretend we have ) and everyone else who loves you.
I want to hear back from you in a couple of days please telling me that you know you can carry on.
You don't know how much your response means to me. Before this I was a mental health counselor and every day I felt like I helped people and I mattered. Now I just feel like I make no contributions to life at all and that's hard. It helps me so much to feel that I can help you or anyone.
I do care and am grateful that you care about me!
Jamie said:
Virginia Girl,
I remember a nice response you sent me once when I was depressed and posted about it. I remember and I love you for it. I love you for taking the time and reaching out to help me. Like the others said before this post: we love you, we need you, we need each other, we understand each other, we are brothers and sisters in pain. YOU are a part of the "WE." We care about you and you may not realize that you are important in our lives, but you are. Know that and find comfort in that.
(Giant bear hug and big ...maaahh... kiss on the cheek)
Thank you so much for all the advice and encouragement Min.
I showed my husband the site you suggested last night and he actually took the time to look at it. I don't know if it will make any difference or not. He just does not seem to connect to me or my feelings lately. I think the illness scares him and the only way he knows to respond is push me away.
I am just so thankful I have all of you here to keep me sane and from doing anything to end my life!
This link is provided in the post in case it won't connect you. I think it is a very good one! And I know it really helped my husband see things from MY point of view...when I couldn't tell him myself..
They spell it out much better than I ,..ever could. LOL
It helps them to see that it's really Not our fault ...and to see what we go thru in Wanting to go out and DO things,, but knowing WE really cannot at times. How hard it really is....:(
I have to say thank you to all my friends that responded and pulled me back from such a dark place.
I think we all consider ending this terrible rollercoaster of pain at times and you all brought me back to understanding we need each other. Even when the people in our lives don't seem to care and let us down we have support here.
I love you all and can not thank you enough for being there for me!!
I am glad you did not take all that medicine and leave us either! Sharing your story helped me so much! I know how each and every day is a struggle and sometimes we just want it to stop!
I hope today is a much better day for you and you are pain free!
((hugs))
borris said:
oh virginia girl, i really understand what you feel, i was there last week, doing exactly the same thing, i had all my morphine tipped out along with oxcarbazepine and amytriptyline, surely i have enough to knock out a horse let alone me, i was crawling around the floor in agony, my wife decided a good time to go to her hair dressers. not a happy chappy. i had a cuddle with my cat and then went and sat on the floor of the kids bedroom and cried as quietly as i could. this is a horrid condition, and every single day is a god dam awful struggle. i really feel your pain, so does everyone else on here, please be strong. you are not useless and taking up space, you are strong, you fight this every day, today is worse than yesterday, tomorrow might be better than any day you can remember. i spent all the last weekend in bed, i make no excuses to my wife or family anymore, if i feel like crap i tell them and ask that someone takes the kids out for a while or comes around so i can go bed. you are stong, its understandable to feel like this. sending you happy thoughts and wishes for a good few days. x
Thank you for caring and for your advice. You are right and helped me realize that "I don't normally think this way."
In my former life (like last year) I was a mental health counselor and it helped me to remember that that statement means there is a lot more going wrong than a bad day. It could be the constant pain or depression or lack or empathy from my husband but it's not me.
I don't know how to thank you for be so understanding and caring.
I hope you too have happy thoughts and pain free days!
((hugs))
Karen Brown said:
In your post you write, "I don't normally think this way ..." Read it again and again. You are in a very dark place right now and I understand how you'd want to give in and give up but remember that you "don't normally think this way." To me that means you have days that are better (if only a little bit) than today or yesterday. Of all the people who have tried to kill themselves and failed at it, I have very rarely read that these people tried again. In fact, they deeply regretted that they tried to end their life.
Try to make a list ... actually write down anything that makes you want to stay among the living. Anything. Add to it over the coming days and weeks. Listening to music, reading, watching tv, things you can do that won't make your pain worse.
It sounds like the diagnosis of Fibromyalgia is fairly new. It must have blindsided you. How could you not feel overwhelmed? Now every pain you feel is being defined by you as TN, GN or the fibro. It means you're paying too much attention to your pain and that's not good. Yeah, I know. How can you NOT pay attention to the pain when it consumes you. I get that. And I've felt what you feel though my pain comes for a period of time, then leaves for awhile. I get some relief but the last time I was immersed in the pain and flirted with the idea of killing myself, I immediately thew that notion aside because I have two teen-aged sons who need me and who would be devastated. At the time it seemed like the best decision but that passed and I was horrified that I even considered it.
Please try to love yourself and find your own value because I guarantee you, you possess a great deal of worth. Take a stand against your pain. Don't let it win. Don't give into it. Even if all you can do is lie in bed and grimace in pain, create small goals for yourself ,,, "In ten minutes I'm going to get up and do something for ten minutes, then I can go back to bed." Set your alarm to remind you to get up. "I'm going to get up and wash my face and comb my hair and put on some make-up even if no one sees me today." Small steps/small goals.
I know I'm blathering on here but I want you to know, Virginia Girl, that you are valuable here. And because we understand what you're going through we want to help. We are family, your family, even though you don't know any of us personally. We want you to live to see another day, then another and another. Please don't give up. Keep us posted here. Make posting be one of the things you will do today.
Thank you for understanding and responding. I guess I just needed so much to know someone cared.
You and my other friends have given me that.
I hate that you all suffer as I do but it helps to have someone know what pain I am in.
I wish you could have a pain free day!
Patty said:
i am so sad for you Virginia Girl. this is a dark, dark place you are in and i am sorry. the tn journey is very hard. i have tn, occipital neuralgia and also fibromyalgia as well. i understand. i would be crushed to know this had been too much for you and that you left us. please don't leave; you are important and needed. you are not alone. even when you are sitting alone in the car while your husband does 'fun' things you are not alone. every tner is in the car with you. we understand and care. hugs
Thanks for responding, understanding, listening, and being my friend.
It is scary what we think about when we go through this so long. I wish I didn't look up all the medications to see what the most lethal dose was. I wish I didn't think it was easier to give up and disappear.
We are so blessed to have each other and to have someone to care! Thank you for being that someone!
Dawn Monarch said:
Virgina girl, I am so sorry you are also in such a dark place.This TN IS HORRIBLE, THE PAIN, THE MEDS., THE DRS., THE DEPRESSION, THE ANIXETY, ECT.How do any of us who are here right now get past all the hopelessness? After 20 some yrs.of this my family is sick of this and know longer want to deal with me unless they feel they have too.I don't think they realize yes, they can walk away anytime they want I CAN NOT IT IS IN MY BODY. I CAN NOT JUST INGORE IT LIKE IT DOES NOT EXIST! OH GIRL!I AM SO SORRY! Sorry that I am not very positive right now.I really don't want to die so even though my right now outcome looks pretty bleak I am still reaching out. Just like last week borris was at his witts ends and untill today I don't. think he said anything about taking too. many pills.He has two little ones. How do we keep from slipping over the edge so to speak? I scare myself at times. Lets just keep coming here we need each other and I want to say we need people like Karen brown beautifully said and very non judgemental.soft hugs, dawn
i am so glad you decided to stick around. i was so worried yesterday. please know that we are all always here for you and that we value and need you. i wish you a day filled with wonder and peace. hugs
virginia girl said:
Hey Patty.
Thank you for understanding and responding. I guess I just needed so much to know someone cared.
You and my other friends have given me that.
I hate that you all suffer as I do but it helps to have someone know what pain I am in.
I wish you could have a pain free day!
Patty said:
i am so sad for you Virginia Girl. this is a dark, dark place you are in and i am sorry. the tn journey is very hard. i have tn, occipital neuralgia and also fibromyalgia as well. i understand. i would be crushed to know this had been too much for you and that you left us. please don’t leave; you are important and needed. you are not alone. even when you are sitting alone in the car while your husband does ‘fun’ things you are not alone. every tner is in the car with you. we understand and care. hugs
I know you are in a Really Dark Place right now like everyone says. I too have been in your shoes and it wasn't that long ago. I have days or sometimes even weeks where I can barely stand for my clothes to touch me so I really don't want any people around me. I also have CMT and Agoraphobia And PTSD to go with my ATN so I really agree with you that I have felt like giving up. But then I remember, I HATE to loose and if I give up and kill myself then that means I let this horrible nasty disease win and I am NOT about to let it beat me!!!! Also I have found that going to group therapy once a week and individual therapy every other week really seems to with dealing with a lot of my issues about the pain and the loss of what is tend to call my world. Check around you can find places that are income based or state funded and will take your disability insurance (Medicaid, united health,...) and it will not cost you anything. It will not hurt to try and it may help you feel better.