1. < Chronic Pain

Non pain related personal discussions

Posted by medic7054 @medic7054, Aug 25, 2017

I am strongly considering opting out of this forum. I, on average get 20-30 emails per day by people using this as their own personal "chat room. I thought this forum was for CHRONIC PAIN SUFFERERS discussing their pain issues and various treatments. Not talking about their darn DOG, among other non pain related. These people are giving me more pain.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

HazelBlumberg | @hazelblumberg | Aug 27, 2017
In reply to @jenapower "I'm not sure who actually started this topic, but thank you. I agree it should slow..." + (show)
@jenapower

I'm not sure who actually started this topic, but thank you. I agree it should slow down the general introduction Chronic Pain subject thread, and give people a place to get to know each other better.

Hi Hazel, now everyone can talk about our furry friends who help support many of us each day. Wish we could post pics of each of our pets, but I can't figure out how.
Happy chatting, Jennifer

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Medic, the forum isn't being turned into an informal chat room. There is a specific topic for non pain related issues. People who wish to chat can go there. People who don't want to go there don't need to.

Hazel

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jenapower | @jenapower | Aug 27, 2017
In reply to @marield65 "Then another thread should start for lonely people and pets. This thread has been for people..." + (show)
@marield65

Then another thread should start for lonely people and pets. This thread has been for people who have chronic pain and suffering. We are also feeling alone with our pain. But I don't want to hear about pets. This is about people. Make a lonely people column. I am alone with my pain. Do you think my husband or my family really understands having pain every day and trying to live a normal life as possible? Or going out to dinner with friends and sneaking a pain pill into your mouth with out anyone noticing it? Or everyone is having a drink and a good time and you are faking it? This is what this column is about. I feel my pain, no one else can feel it unless they have been through the same thing. My back hurts. I can't even go to one store to look for underwear with out feeling like my back is cracking. When I'm in pain I get overwhelmed and afraid that this time it will not go away. I want to, and am planning on a 4 day trip where we have to fly, and I am afraid that the pain is going to ruin the one vacation I have had in a long time. How much can I put my family through? I have 8 other brothers and sisters. 6 of them won't talk to me because they think I am faking it or using it as an excuse to get out of things until one day I got so mad at them I told them that they could all go to hell.
THESE ARE THINGS I ALWAYS WANTED TO TELL THE CONNECT GROUP BUT DIDN'T BECAUSE I DID NOT WANT TO HOG THE GROUP, I WANTED FEEDBACK ON MY PAIN AND NOW I SHOULD JUST DELETE THE EMAIL? I DON'T THINK SO. THE LONELY PEOPLE SHOULD START THEIR OWN BLOG.
Marield65

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You're right Marie, everything you just stated is what this thread is for. There are people that I have talked about their dogs because they give them comfort and connecting on that level makes them happy.

Actually was one of the people to bring that to one of the moderators, about the dog talk, but then I thought what the heck now that we have a nonspecific thread to just connect, I would answer someone who obviously adores their pets. I can connect with them on that level and give them a friend. What is wrong with that? I don't understand.

I experience everything you just mentioned above, and I personally don't think you're hogging any thread by talking about it. I truly, truly hate sneaking a pain pill at the table, losing family and friends because of what I'm going through and I don't know how to handle it. I starting to cry just reading about what you wrote, because everything you just said I have gone through too. And I hated it is much is you do. I believe my little dog does give me unconditional love and company when I don't have anybody else's company. I think this can be a way everyone on this list see that not everyone needs the same thing and we can learn to empathize with each other for our differences, and we can support each other in our common problems. I really believe this is an important thread, and none of us should be dictating or putting limitations on what anyone can and can't talk about here. What you just stated above about yourself really touched my heart. I want to feel free for you to say all of that because it really means a lot to me personally, but if someone else wants to talk about their puppy because that means something to them, if we have an open thread why can't they? Why are we telling each other what to do now on an open thread?

I'm so sorry that you are feeling like the odd man out with your family and friends, it's a horrible feeling. I feel exactly the same way sometimes. I would love my old life back but right now it's not feasible, and I have to adapt to what I have. I truly hope and pray that things get better for you and everyone else on this list. We all deserve it, we're all humans and none of us want to be in the situation that were in. Jennifer

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jenapower | @jenapower | Aug 27, 2017
In reply to @jenapower "Marie, I truly am sorry you're so upset but I'm not a moderator. I didn't start..." + (show)
@jenapower

Marie, I truly am sorry you're so upset but I'm not a moderator. I didn't start this thread, and I don't like getting yelled that. I posted one kind post and it set off all hell breaking loose. I'm not answering anymore, I'm done sorry. Get one of the real moderators to help you. Im truly surprised that a thread put up after this idea was already discussed on a thread, and people said it was a good idea on that thread in the Pain forum, would cause this much grief.

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When you post in all capitals, that is taken by most as yelling or severe anger

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jenapower | @jenapower | Aug 27, 2017
In reply to @kanaazpereira "Dear @medic7054, @jenapower, @marield65, I am so sorry you are upset. I'm the Connect moderator for..." + (show)
@kanaazpereira

Dear @medic7054, @jenapower, @marield65,

I am so sorry you are upset. I'm the Connect moderator for this weekend, and I definitely want to try and work out a solution together with you, that suits you.

Connect Is an online community where patients and families can share their experiences, find support and exchange information with people who've faced similar experiences. Every member deserves ongoing support – and at times it may go beyond health or medical support. As a moderator, I often see posts that may not be related to our group, but it could be the case where that person feels comfortable enough with the other members to "drop in" with a message or a comment. And sometimes, it may not even be a question, but perhaps a need to just participate and connect with another person.

On the other hand, I completely understand that this can be frustrating when trying to follow a specific conversation, members get put off by the interruption. You were spot on in suggesting that it may help if a moderator tries to redirect the unrelated post/comment/question.
There are some incredible conversations taking place in these groups on Mayo Clinic Connect:
– Mental Health: https://connect.mayoclinic.org/group/mental-health/
– Just Want to Talk: https://connect.mayoclinic.org/group/other/
For example, in this discussion, "Anyone Else With PTSD?" https://connect.mayoclinic.org/discussion/anyone-else-with-ptsd/, members also talk about the invaluable support and love they get from their pets.

On a personal note, with my large Indian family (imagine “Big Fat Greek Wedding"), I find that conversations go off topic all the time. That's the intrinsic nature of conversation, isn’t it? What I’ve also realized is that in those 'meandering' moments, I (sometimes) really connect with that person, maybe on a different level, or maybe on a deeper level, because I feel he/she is comfortable enough with me to “let me inside.”

@medic7054, @jenapower, @marield65, you are such an important part of this community, and you contribute to making it a welcoming, safe place. It is our sincere hope that you will continue to express your feelings, and share what’s going on at any moment – so that Connect can continue to be the supportive community that it has always been.

I hope this helps, and I apologize for being so long-winded, but thank you for bringing an important topic to our attention. Please let me know if there are any questions we can help answer. Let's keep talking.

Kanaaz

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Kanaaz, I really appreciate what you said, and thank you for stepping in. Although it hasn't taken effect I did switch over to digest instead of just dropping out. So my answers may not be in real time anymore, mostly because I just don't think the hostility and anger is appropriate. If I look at it overall and go through the thread it gives me a chance to put it all in perspective before I answer. I don't want to quit this forum, it's been helpful to me, but on the flip side I think everyone should avoid writing in all capital letters because that is considered yelling when you're writing an email, and everyone should take a deep breath before they answer, complain or make threats.

Understand this forum isn't all about one person. If it's a subject you're not interested in ignore it, if it's a subject you are interested in, answer but be kind. I feel that anyone shouldn't be afraid to talk about what's really affecting their life.

I loved what Marie said about her uncomfortableness with friends family in handling the loss of being able to go out and just be normal. All the people here are hurting for different reasons.

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jenapower | @jenapower | Aug 27, 2017
In reply to @marield65 "This is suppose to be about chronic pain." + (show)
@marield65

This is suppose to be about chronic pain.

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Well said Marie, it's what I've also been trying to say. Please all of us give room for us as individuals to speak our minds, our questions, our shirts, and anything else that we would like to post.

No matter what the name of this generalized thread is called, someone tried to make it a place for any subject. I think you all understand that is why this was started. That way you can identify it and not read it, is asking for the digest version. It lists every single topic of discussion, then you can click on the ones that you were interested in and avoid the others. That's my best suggestion for those that find this to open at the forum because it allows things they don't want to talk about.

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medic7054 | @medic7054 | Aug 27, 2017
In reply to @miro "I am truly sorry about people leaving the forum rather than having those who are interested..." + (show)
@miro

I am truly sorry about people leaving the forum rather than having those who are interested in more of a 'chat' forum beginning one. I have been following so much of the chronic pain input and skipping the ones that are not relevant for me, such as those discussing their pets. I understand that for many people pets play an important role, but for others they do not. I too would prefer a separate forum rather than feel bombarded with topics that are not of interest to me, but are to others. I have learned so much from people writing about their experiences with chronic pain, treatments that work, ones that don't, etc. Please don't give up writing in this forum. There is so much to learn from one another, to feel validated, and to feel we are understood by each other.

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I agree. This forum "used" to be very helpful for my pain, but it changed into a "personal" chat room where ALL subjects were deemed interesting or informative. I am glad to see that a Non-pain related forum has been added for this. Maybe at some point I will rejoin, but for know I must unsubscribe.

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jenapower | @jenapower | Aug 27, 2017
In reply to @miro "I am truly sorry about people leaving the forum rather than having those who are interested..." + (show)
@miro

I am truly sorry about people leaving the forum rather than having those who are interested in more of a 'chat' forum beginning one. I have been following so much of the chronic pain input and skipping the ones that are not relevant for me, such as those discussing their pets. I understand that for many people pets play an important role, but for others they do not. I too would prefer a separate forum rather than feel bombarded with topics that are not of interest to me, but are to others. I have learned so much from people writing about their experiences with chronic pain, treatments that work, ones that don't, etc. Please don't give up writing in this forum. There is so much to learn from one another, to feel validated, and to feel we are understood by each other.

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Sounds like you've made the right decision for you. Take care

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Marield65. Marie | @marield65 | Aug 27, 2017

I have no intentions of quitting the forum, whichever I am in, but I hope there are no hard feelings with anyone. It is just so tiring when you are already tired and uncomfortable and you finally get to the computer or iPad, and see the chitchat. I think I want to see a cure and it is so frustrating. But sorry for the all capital letters, I was trying to make a very personal point that I have never said to anyone but felt safe telling it to the forum, and I wanted to be heard. I hope we can all work together. Sincerely, Marie (Marield65)

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jenapower | @jenapower | Aug 27, 2017

Marie, thank you for saying what you just did and there's absolutely no hard feelings. You have said some very kind things to me personally and I have appreciated them. When I read what you said about not being able to go out like you'd like to, being uncomfortable about taking a pill at the table, etc. I got tears in my eyes because I felt exactly the same way. I think it was good for you to say what you did because you needed to. I need to say the same kind of things. I've lost a lot in my life that used to be something I just took for granted. I've had to do a lot of adjusting and believe me I also have said things to people I love that I shouldn't because I'm just hurting and don't know what to do to make it go away. It's really hard to stay yourself when you really don't feel well. All is good and I'm glad you're here. Jennifer

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