Member Neuropathy Journey Stories: What's Yours?

@lorirenee1
Lori, Lori Lori. You, my dear, are a natural born empath. I know because I live with one. Linda can watch just about anything on TV and breaks up into tears (sometimes sobs). It's natural, I think, for some people to have this characteristic, but it is a rough trait to have because it tends to throw a person off balance, a state which is NOT FUN. I am sorry for you that this happens for you, and I hope you can figure out a way to center yourself. Emotions are very powerful, they serve us and help us be human and caring and kind. But, they do burn a ton of energy, which can take a toll on the little beings that we are. I think one way to help to disperse some of this excess energy and be more balanced is talking to all of us here on Connect. So I am very glad you are here, and I encourage you to use it (and us) a lot, just as you are doing, and as I too am doing. Continue to unburderden these feelings you are feeling. We are here for no other reason than to listen and try to be there for each other.

You are a very dear person, and very much appreciated here. Your inputs are so very helpful, and your genuineness is so refreshing. I care about you Kiddo, just as I care about all "the regulars" here. Even a few who only post sporadically but do pop in every so often. I can't even remember some of their Connect "handles" but I remember them. I believe very much that God has a hand in everything and that He has a good reason for making Conect be here for all of us to use and to get help from each other and to be of service to each other.

I am of two different minds about the idea of meeting everyone here. Sure in one way it would be really fun to meet all of my friends here. Heck, I care as much about some here as I have about some of the best friends I ever had in my life. But this to me is kind of a unique little world. This is the first forum (chat room? whatever it's called) I have ever been a part of. For me it has become a special "place" where I can express myself, just me, or more specifically just my thoughts. It feels like a very special way to communicate with other human beings, almost like soul to soul in a way. I don't have to think about how I look, how I am dressed, do not have to wonder what someone is thinking about me as I am trying to form my thoughts and responses. It's a very pure way to communicate and quite liberating. And as I write to someone I can just focus on them. And because of all that I think we are able to share a part of ourselves that just isn't possible (for me at least) in any other way.

I don't mean for this to become a book, but I also want to try to get across to you that I really do CARE. I obviously can't do anything more or less than that here, just express that, that I care. You, Lori, have become a dear friend here and I look forward to hearing from you whenever you need to express yourself. Okay, here is one final analogy. It occurred to me once how similar being here is to us all being prisoners locked in our individual cells in the prison (this world) going along with our lives in our cells, but then we hear a tapping, and realize that someone is in the next cell, but we can't hear them. But then we find we can pass notes to each other through a thin crack in the wall. Suddenly our worlds have opened up and another human being is there whom we can talk to. I imagine that this is kind of like that. We are not any less important to each other just because we can't see each other and sit together in the same room. In fact we are MORE important to each other for what we can give to each other.

Hang in there Lori, and maybe try this. I don't know that it will necessarily work, but it might. Try to engage your sadness. By that I mean try to talk to your emotions and tell them that they've got to calm down a bit so they don't wear you out totally. To do this you might want to sit quietly in a room with no distractions and just focus within and feel you being there with you. Have a conversation with yourself. This has actually worked for me in the past is why I suggest it. You might be amazed at how effective doing this could be. Beyond that I got nuthin, except to say I hope the very best for you my friend. You are a sweetheart.

Final thought: No matter how bad things feel in the moment, they will ALWAYS feel better later. Don't get too hooked on the moment.

Much love to you, Hank

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Rachel and Lori, hang in there goils! My heart aches for your struggles and pain and I hope and pray that you can have victory one minute at a time. Seems like more than that is too overwhelming. I pray you experience peace and comfort in your souls and relief in your bodies. Many, many blessings, Sunny 🙏❤️

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@lorirenee1 @jesfactsmon

Tears. I feel the emotions, but I didn't shed any tears from the time, at around age 8?, when Dad said to me, "Big boys don't cry.", until I was 55, and self-admitted in a safe house after several suicide attempts. I don't know what triggered the tears, but once they started, I couldn't stop.

I'm kind of back to the "bbdc" mentality, and sometimes I envy the ability some people have to speak the language of tears. It's a foreign language for me. At times, a few of them flow during intense therapy sessions, and I do experience the emotions behind the tears.

Safety. Another big deal for me. I feel safe in this Connect group, to say things I probably wouldn't say in a face to face group setting. I cringe sometimes, after writing for the hundredth time about how much my feet hurt, when many in the group would be thrilled if that was the extent of their pain. In real life, I avoid saying anything about my level of pain. I think of the boy who cried wolf.

Pain isn't limited to what our bodies are telling us. Mental, emotional pain - depression and all of its siblings - is every bit as real, every bit as debilitating as neuropathy, migraines, bursitis, strokes...the list goes on. I think that there are a lot of us here who have pain at multiple levels. For men, the old "bbdc" mindset carries over to our false thinking about being stoical about the different types of pain. We buy into the hyper self sufficiency, pull yourself up by your own bootstraps, get over it, wear whatever mask the situation calls for. Don't be vulnerable. Keep those secrets.

This isn't a sermon. It's how I survived for decades, until it didn't work anymore. Guilt and shame and fear, feeling like a fraud. It can become more of a load than we can carry. Too many rocks in my backpack. I reached a breaking point, a realization that either I opened up and talked to someone or I couldn't go on living. Depression, anxiety, PTSD, a too-full backpack pushed me over the edge.

It was a very dark place and time for several years, but by God's grace and with the help of some really good therapists, I found my way back to a better place. Then I discovered the joy of pn. But that's another chapter for another late night's ramble. Finding Mayo Connect made the next chapter a lot less lonely for me. I don't know if you all realize what a vital role you play in making survival possible, giving a sense of hope, and being listener/cheerleader to someone who might be ready to chuck it. This is community.

Love you all.

Jim

Jump to this post

@lorirenee1
Lori, Lori Lori. You, my dear, are a natural born empath. I know because I live with one. Linda can watch just about anything on TV and breaks up into tears (sometimes sobs). It's natural, I think, for some people to have this characteristic, but it is a rough trait to have because it tends to throw a person off balance, a state which is NOT FUN. I am sorry for you that this happens for you, and I hope you can figure out a way to center yourself. Emotions are very powerful, they serve us and help us be human and caring and kind. But, they do burn a ton of energy, which can take a toll on the little beings that we are. I think one way to help to disperse some of this excess energy and be more balanced is talking to all of us here on Connect. So I am very glad you are here, and I encourage you to use it (and us) a lot, just as you are doing, and as I too am doing. Continue to unburderden these feelings you are feeling. We are here for no other reason than to listen and try to be there for each other.

You are a very dear person, and very much appreciated here. Your inputs are so very helpful, and your genuineness is so refreshing. I care about you Kiddo, just as I care about all "the regulars" here. Even a few who only post sporadically but do pop in every so often. I can't even remember some of their Connect "handles" but I remember them. I believe very much that God has a hand in everything and that He has a good reason for making Conect be here for all of us to use and to get help from each other and to be of service to each other.

I am of two different minds about the idea of meeting everyone here. Sure in one way it would be really fun to meet all of my friends here. Heck, I care as much about some here as I have about some of the best friends I ever had in my life. But this to me is kind of a unique little world. This is the first forum (chat room? whatever it's called) I have ever been a part of. For me it has become a special "place" where I can express myself, just me, or more specifically just my thoughts. It feels like a very special way to communicate with other human beings, almost like soul to soul in a way. I don't have to think about how I look, how I am dressed, do not have to wonder what someone is thinking about me as I am trying to form my thoughts and responses. It's a very pure way to communicate and quite liberating. And as I write to someone I can just focus on them. And because of all that I think we are able to share a part of ourselves that just isn't possible (for me at least) in any other way.

I don't mean for this to become a book, but I also want to try to get across to you that I really do CARE. I obviously can't do anything more or less than that here, just express that, that I care. You, Lori, have become a dear friend here and I look forward to hearing from you whenever you need to express yourself. Okay, here is one final analogy. It occurred to me once how similar being here is to us all being prisoners locked in our individual cells in the prison (this world) going along with our lives in our cells, but then we hear a tapping, and realize that someone is in the next cell, but we can't hear them. But then we find we can pass notes to each other through a thin crack in the wall. Suddenly our worlds have opened up and another human being is there whom we can talk to. I imagine that this is kind of like that. We are not any less important to each other just because we can't see each other and sit together in the same room. In fact we are MORE important to each other for what we can give to each other.

Hang in there Lori, and maybe try this. I don't know that it will necessarily work, but it might. Try to engage your sadness. By that I mean try to talk to your emotions and tell them that they've got to calm down a bit so they don't wear you out totally. To do this you might want to sit quietly in a room with no distractions and just focus within and feel you being there with you. Have a conversation with yourself. This has actually worked for me in the past is why I suggest it. You might be amazed at how effective doing this could be. Beyond that I got nuthin, except to say I hope the very best for you my friend. You are a sweetheart.

Final thought: No matter how bad things feel in the moment, they will ALWAYS feel better later. Don't get too hooked on the moment.

Much love to you, Hank

Jump to this post

@lorirenee1 @jesfactsmon

Tears. I feel the emotions, but I didn't shed any tears from the time, at around age 8?, when Dad said to me, "Big boys don't cry.", until I was 55, and self-admitted in a safe house after several suicide attempts. I don't know what triggered the tears, but once they started, I couldn't stop.

I'm kind of back to the "bbdc" mentality, and sometimes I envy the ability some people have to speak the language of tears. It's a foreign language for me. At times, a few of them flow during intense therapy sessions, and I do experience the emotions behind the tears.

Safety. Another big deal for me. I feel safe in this Connect group, to say things I probably wouldn't say in a face to face group setting. I cringe sometimes, after writing for the hundredth time about how much my feet hurt, when many in the group would be thrilled if that was the extent of their pain. In real life, I avoid saying anything about my level of pain. I think of the boy who cried wolf.

Pain isn't limited to what our bodies are telling us. Mental, emotional pain - depression and all of its siblings - is every bit as real, every bit as debilitating as neuropathy, migraines, bursitis, strokes...the list goes on. I think that there are a lot of us here who have pain at multiple levels. For men, the old "bbdc" mindset carries over to our false thinking about being stoical about the different types of pain. We buy into the hyper self sufficiency, pull yourself up by your own bootstraps, get over it, wear whatever mask the situation calls for. Don't be vulnerable. Keep those secrets.

This isn't a sermon. It's how I survived for decades, until it didn't work anymore. Guilt and shame and fear, feeling like a fraud. It can become more of a load than we can carry. Too many rocks in my backpack. I reached a breaking point, a realization that either I opened up and talked to someone or I couldn't go on living. Depression, anxiety, PTSD, a too-full backpack pushed me over the edge.

It was a very dark place and time for several years, but by God's grace and with the help of some really good therapists, I found my way back to a better place. Then I discovered the joy of pn. But that's another chapter for another late night's ramble. Finding Mayo Connect made the next chapter a lot less lonely for me. I don't know if you all realize what a vital role you play in making survival possible, giving a sense of hope, and being listener/cheerleader to someone who might be ready to chuck it. This is community.

Love you all.

Jim

Jump to this post

@jesfactsmon & @lorirenee1 Hank your post is one of the more compassionate, instructive and supportive of any I've read in a long time. A Big Thank You for what you wrote and expressed. Aware for some time that I am one of those highly sensitive people (hsp) the descriptor "empath" was new to me until recently. I wish I'd understood more about this trait earlier in life. However, what you wrote is so important for those of us who take events more seriously and more deeply than ordinary bears. smiles

Especially your third paragraph describes so beautifully what the Mayo Connect forums mean to me. And there is truly something very liberating about the layer of anonymity that Connect provides that promotes more freedoms to express in ways I would never consider with anyone face-to-face. A few years ago when a member of another online group wrote me offline asking if I and another member in a diff. city might meet and get acquainted in person, I sorta' froze up and declined the invitation. The additional layer of personal privacy an online support group provides is a valued protection for me and allows me the advantages it seems to hold for you as well.

I am also learning to take breaks from the media and from specific others when I begin feeling the overload of just too much bombardment of news or find I'm becoming too invested in another's situation. Not an easy task for a "compulsive helper" but it can be done. Wish I'd started sooner. Now I practice more often my closest friend's mantra of "this too shall pass". She was right; it does.

Jump to this post

@lorirenee1 @jesfactsmon

Tears. I feel the emotions, but I didn't shed any tears from the time, at around age 8?, when Dad said to me, "Big boys don't cry.", until I was 55, and self-admitted in a safe house after several suicide attempts. I don't know what triggered the tears, but once they started, I couldn't stop.

I'm kind of back to the "bbdc" mentality, and sometimes I envy the ability some people have to speak the language of tears. It's a foreign language for me. At times, a few of them flow during intense therapy sessions, and I do experience the emotions behind the tears.

Safety. Another big deal for me. I feel safe in this Connect group, to say things I probably wouldn't say in a face to face group setting. I cringe sometimes, after writing for the hundredth time about how much my feet hurt, when many in the group would be thrilled if that was the extent of their pain. In real life, I avoid saying anything about my level of pain. I think of the boy who cried wolf.

Pain isn't limited to what our bodies are telling us. Mental, emotional pain - depression and all of its siblings - is every bit as real, every bit as debilitating as neuropathy, migraines, bursitis, strokes...the list goes on. I think that there are a lot of us here who have pain at multiple levels. For men, the old "bbdc" mindset carries over to our false thinking about being stoical about the different types of pain. We buy into the hyper self sufficiency, pull yourself up by your own bootstraps, get over it, wear whatever mask the situation calls for. Don't be vulnerable. Keep those secrets.

This isn't a sermon. It's how I survived for decades, until it didn't work anymore. Guilt and shame and fear, feeling like a fraud. It can become more of a load than we can carry. Too many rocks in my backpack. I reached a breaking point, a realization that either I opened up and talked to someone or I couldn't go on living. Depression, anxiety, PTSD, a too-full backpack pushed me over the edge.

It was a very dark place and time for several years, but by God's grace and with the help of some really good therapists, I found my way back to a better place. Then I discovered the joy of pn. But that's another chapter for another late night's ramble. Finding Mayo Connect made the next chapter a lot less lonely for me. I don't know if you all realize what a vital role you play in making survival possible, giving a sense of hope, and being listener/cheerleader to someone who might be ready to chuck it. This is community.

Love you all.

Jim

Jump to this post

@jesfactsmon & @lorirenee1 Hank your post is one of the more compassionate, instructive and supportive of any I've read in a long time. A Big Thank You for what you wrote and expressed. Aware for some time that I am one of those highly sensitive people (hsp) the descriptor "empath" was new to me until recently. I wish I'd understood more about this trait earlier in life. However, what you wrote is so important for those of us who take events more seriously and more deeply than ordinary bears. smiles

Especially your third paragraph describes so beautifully what the Mayo Connect forums mean to me. And there is truly something very liberating about the layer of anonymity that Connect provides that promotes more freedoms to express in ways I would never consider with anyone face-to-face. A few years ago when a member of another online group wrote me offline asking if I and another member in a diff. city might meet and get acquainted in person, I sorta' froze up and declined the invitation. The additional layer of personal privacy an online support group provides is a valued protection for me and allows me the advantages it seems to hold for you as well.

I am also learning to take breaks from the media and from specific others when I begin feeling the overload of just too much bombardment of news or find I'm becoming too invested in another's situation. Not an easy task for a "compulsive helper" but it can be done. Wish I'd started sooner. Now I practice more often my closest friend's mantra of "this too shall pass". She was right; it does.

Jump to this post