Feeling vulnerable and almost ashamed
Beckycm1971
Posts: 40 Member
Anyone feel this way ever. I have joined this group, and the fibromyalgia group, and then I leave. If I post I regret posting. I know it's kinda dumb, but I have never been one to complain about pain and what not much, so I feel very vulnerable doing it. I feel bad mentioning it on Facebook, or my MFP newsfeed. But sometimes I just wish I had someone to talk about it with. I know my family thinks I'm nuts, my husband I'm sure is tired of hearing about it, I really try to limit my complaints to him since he has his own pain, but he would never tell me he's tired of hearing it. I think not having a diagnosis makes it harder, makes me feel crazier. Anyways, just wondering if anyone ever feels this way.
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I understand how you feel. I have this overwhelming desire to talk about my pain because it colors so much of my life... but I'm afraid that people will get bored, or make fun of me, or accuse me of exaggerating or trying to get sympathy. It's a really thin line to walk. *sigh*0
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Exactly! I'm sorry you feel this way too. We should be able to talk about it. Talking about it doesn't make us weak or mean that we aren't trying to move forward. Thanks for your reply!0
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I can relate especially because i'm sure plenty of people (my husband included) are tired of listening to me complain about my struggles/pains/frustrations/pains/ailments/did I mention pain?. But, I don't always think we are complaining. We NEED to vent our frustrations regarding these conditions because if we don't, it bottles up and overflows and we all know that isn't a pretty sight...for anyone. There is nothing wrong with you venting about your struggles and frustrations b/c with these conditions, they sure do cause a lot of them! Its a friggin roller coaster many times! They impact almost every aspect, and for some of us, every possible aspect of our lives. Its a constant need to readjust how we are able to cope and survive with these conditions (physically, emotionally, mentally, spiritually) that the average person (anyone who doesn't suffer from our health issues) don't understand, nor do they know how to empathize/be compassionate with at all. My advice, try to work through your feelings of shame regarding venting and see it as such..you are venting and you are always more than welcome to vent to us, those who truly do understand and can relate to what your going through. I am also on FB and have a wonderful closed group that I vent to. They are so supportive. Its nice to know there are others who ...get it.0
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I don't feel ashamed of venting, but I do understand the part about people being tired of hearing it. It hurts most when it's those you love and who you should be able to talk about such things with. It does impact every aspect of life and as someone already mentioned-unless they've undergone something similar, people just don't get it. I find that being thought of as someone who just complains about 'minor' things and that people acting as though you being in pain is "nothing" and "not that bad" to be one of the tougher aspects of it.0
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I understand how you are feeling, I worry about my family getting tired about hearing me talk about it too,so often I just keep in in. I think in here you will find that no one will feel you are "complaining" as much as seeing it as a very much needed release of your feelings and tension related to them. It IS necessary to have people you can talk to about it who understand first hand what you mean. No one else can "get it" the same as someone who lives it. I am fortunate to have several friends on Facebook who also have chronic pain conditions so I can talk about it, but I do keep it to a minimum so I am not perceived as "whiny" lol. Is there a reason you have not yet been diagnosed? I know it can take a while and there are still doctors out there who don't "Believe" in it, but a diagnose would help...at least in helping some people understand why you hurt so much.0
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I so understand0
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I also understand and it is hard talking to anyone that does not understand!!! Feel free to talk anytime!!0
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I absolutely feel that way! You are not alone. I have recently started counseling to deal with this very issue. One of the most important things that I have learned about myself is this: Pain makes me live in my emotional brain. It takes me to a place mentally that is hard for me to manage. It takes me out of my rational and wise mind. I feel neurotic and out of control when it is not managed. I am not neurotic and out of control. It is not in my head. I am in pain. Journaling has helped me manage my feelings about pain. Meditation has helped me separate my mental state from the body sensations of pain. I have also posted things on here or fb and wanted to take them back. The pain makes me feel needy for something that I haven't quite figured out yet. I want to reach out to people, but don't want to be complaining or a downer all the time. It is so hard when I am in pain to think about much else. I recently asked a supportive family member if I could text her random, emotional gripes about my pain so that I would refrain from posting them of fb and then later regretting them. I haven't needed to send her a message, because just having the option to reach out to her was all I needed. I am relatively new to chronic pain. This has been a very difficult thing to deal with and figure out. It's definitely a learning process. I am learning to cope one day at a time. Thanks for the post, I don't think we will regret this post because the people here "get it"
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Never feel alone, we're here to feel your pain with you!
One little thing that's helped me was subscribing to the Fibromyalgia Network on facebook. Their posts help to cheer me up, and also remind me that someone else is out there feeling the same way as me! Their website is fmnetnews.com (FibroNetwork on fb). :flowerforyou:0 -
I also understand how you feel. I live alone with my dogs, and I think they, too, hate hearing me talk about the pain.. or that "mama's getting old" (I'm only 35). Many of my "friends" don't really understand, nor do I think they really care about my pain levels. When someone asks me "Hey, how are you?" sometimes I just want to break down and cry and say "Lousy.. I feel lousy. My joint pain is everywhere and it hurts so bad to even sit." But I just smile and say "Ok thanks, you?" We have a girl here at work who is a hypochondriac and I see how she's treated and I never, ever, want that treatment nor feeling. Because I'm not. I have fibro, I'm in pain and I work through it. I try to manage it. I still run and I'll run til my body no longer allows me to. Don't ever feel bad or ashamed for how you feel. God dealt you this hand. It's up to you to make the most of it and if it means talking about it, then find someone, anyone, a confidant, a family member, to just sit and chat with. Can you possibly find a psychologist that deals with chronic pain issues?0
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I have not only Chronic fibromyalgia but combine that with chronic fatigue so severe just eating a salad drains my energy with digesting the food. Nothing takes away the pain that has me now bed bound, nothing gives me energy. I also have been hypothyroid and have heart issues. Only another suffering person can understand. I am editing because I know now my many miscarriages and high risk pregnancies is because I have another battle called PCOS. This makes losing weight harder especially when I cannot exercise.0
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I completely understand. People look and treat me as if I am making it up, I get told I should start cutting down on my pain meds.
For over 20 years I've been looking for a diagnosis. In 1989 I had two rear end car accidents in one week. I was diagnosed with MS, then after three years told I did not have MS. No one could give me any answers for the increasing amount of pain I was in. It is hard having an invisible disease and it is hard to try and explain why you can't do things. My Doctor recently suggested I research Chronic Myofascial Pain as she believes that this is what I have. Over the years I've moved from one pain med to another, I've managed to keep my pain somewhat under control with medication.
I joined this group because I have been using Wii DDR for my chosen cardiac work-out, but I have been told that it is not good enough to help me loose weight and become active. I also have osteoarthritis which adds to the pain, I have sleep apnea, and am a right below knee amputee. I'm hoping this will be a good place to be when I need to vent, No one wants to constantly see my posts on fb, so I try to keep my comments on my health to a minimum. I think we all feel vulnerable but there is no reason to be ashamed. I'm very sad at times because I cannot do the things I used to do, finally having a diagnosis is a relief. Sorry this is longer than I intended.0 -
I can't even come close to being able to do what I used to do and it wasn't that long ago. I had no idea how much my sense of self was wrapped up in what I was able to do, until I couldn't do it anymore.0
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My turning point came when I had my leg amputated. I did not want to spend more time than was necessary in hospital but was so ill, having caught a respiratory infection just after the surgery. It took about three or four weeks before I came home and wait for my leg to heal so I could be fitted with my first prosthesis. Once more I would be in hospital, for about a month I was told. There was no way I was going to be away from home in the rehap. hospital for a month. With great determination I planned to be up walking unaided as quickly as I could. I practiced every moment I could, I didn't just wait for my therapy sessions, but I walked up and down that hall near my room, every few moments. I was told, now don't over do it, you don't have to rush at this, take you time. I wanted to get home, I wanted my life back. I was home after only two weeks, the fastest rehabilitation they had seen in a long time.
I was determined that the amputation would not take away what last bit of mobility. That all happened in 1980, I have lost count how many legs I have had over the years, but I am told time and time again that if you didn't know I was am amputee you wouldn't know to watch me. At least not before my other knee went on me. If you've read my other posts you will know that the amputation is a minor part of my health issues. I have determination not to let any of it slow me down. Of course it does and I have to limit any activity, gardening is limited to 1 hour. Shopping depends on if I am trying clothes on or just walking around the shops. the stop and go type of grocery shopping I can't do, it is far to hard on me.
The trick is to learn your limits and work within them, you might not be able to do all that you did before but you never give up. If you are in pain then work out the best way to do an activity that won't make the pain worse. Dress with pride, stand up straight and do it for YOU! Never hide who you are and never let your disability define you.0 -
Oh, boy can I ever relate to your concerns. I, too, have joined groups, dropped out, rejoined, etc. I am so very tired of being in pain, but more tired of it being any part of my conversations any more. I just live with it, but sometimes the days are difficult to deal with and unless you tell someone why you are not feeling well, they don't understand. I have just joined this group and am hoping to connect with people who are dealing with similar issues and are learning how to lose weight and get fit in spite of their issues. We can do this; I know we can! 0
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Im sorry I haven't been around, since my last reply my life has been crazy. Well honestly the craziness began New years eve when my husbands store burned down. In February my sister found a lemon sized tumor in her breast. She had surgery for that, my husband and I drove to Reno to help with recovery, (Turned out benign so all is good now with that) came home and five days later I had to fly back to Reno as my dad was unresponsive and on life support. Spent a week there with him in ICU, he doesn't remember any of my being there even after he woke up which was a miracle as there had been ten things that nearly killed him. I came home and 15 hours later we were at the ER here in town with my husbands sister. She has progressive MS and was always in and out of the hospital, this time though they found lung cancer and admitted her. I spent a week there with her, even taking her to her first couple of days of radiation since the cancer had spread to her brain, and also her liver. She came home from there, had 3 weeks and then passed a week ago.
I have been through so many emotions, especially with my dad and sis in law, it's changed my perspective on things. Going through this has helped me to get out of my own head, and focus on others. My pain and symptoms are still here, but I'm not in a cloud focused on them anymore. I still do what I need to do to take care of my self and the issues that I have, but I don't have such a need to talk about every little thing I'm feeling anymore.
I'm just sharing where I am with all the discomfort, pain and restrictions I have. It's always okay to talk about what we are feeling, it's always okay to take the time to take care of ourselves and do what we need to do for us. I have just found myself to be in a different place than I was a couple 3 months ago. It saddens me to see so many of you hurting, I'm glad there is a place here where you can come and not feel alone. Thank you for all your replies and comments, it's definitely helped to know someone gets it. And to Pastorswife, (I think it is, I apologize if I got it wrong) who has an amputated leg. Never let anyone tell you anything you are doing to be active is not considered a workout. DDR as an amputee? Good for you!!0 -
I wish I could find a balance on venting and allowing people to see my pain.
I worry that people don't want to hear it. I worry that it will change my relationships.
More than that, even though chronic pain is part of my life, and always will be, I don't want to acknowledge it. In my head, somehow I think that if I talk about it, that gives it power over me. I know that's not true, but it's where I am. I'm two years into this, and I still haven't found a balance.0 -
You're definitely not alone. It's tough when it rules so much of your life, you know? I totally get the lack of a diagnose part as well. In the very least, we're all here and there is strength in numbers. 0
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Just joined this group and it's nice to see that I am not alone in feeling this way. As of late, the pain is just unmanageable and there is just nothing I can do. Look forward to being a part of this group : )0
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I too suffer from chronic pain and fatigue (FMS/CFS/ME) and all the horrible head trips that go with it. I am lucky that I was approved for disability and no longer have to work, but just living from day to day is enough hard work for me. I have secluded myself from the world because I feel so weak and ashamed. I no longer have friends, other than on FB, but I think it's easier this way, because I don't really have to live up to the expectations of others, except for my own and my family's. It's hard to live in a house full of people who have "normal" pain and "normal" fatigue, because they assume that I feel like they do, and I cannot explain to them that merely taking a shower or holding a book can make me need a three hour nap, or that putting air into my tires will cause such mind numbing pain, that I will lay in bed, moaning and screaming in pain for days. It's hard to think better of yourself when no one else will. And besides my significant other and my kids, I have lost everyone else, my mom, my dad, etc. So I always feel so alone, and scared that I will end up alone and broken and no one will care. My hubby says I need to let go of who I was and embrace who I am, but honestly, who I am is a weak, fragile, emotional basket case. Who wants to embrace that? I am trying to improve my overall health and am hoping that some of the benefits of this will be weight loss, less pain, and more energy. We shall see. I have gone gluten free, grain free, and dairy free. It has helped some. I get excited over the smallest things, like my 6lbs weight loss, considering that I am quite sedentary, this is amazing. Also, I get all proud when I can cook dinner and it doesn't take 3 hours and everything tastes good, because cooking is a huge expense of energy so when I'm just looking out for me, I go with hemp protein drinks and raw spinach covered in something lean and high in protein, like tuna, so my family has no idea how lucky they are to get prepared dinner most nights! I try to keep busy so that I don't have so much time to brood, but I'm pretty good at brooding. I don't expect everyone to "get" me, but it'd be nice if a couple people out there did get me, I'd feel so less lonely and I think it would encourage me to keep at it.0
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Cayceryder I have sent you a private message.0
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Hi All! I have just joined MFP, WW, and now this group! I've been trying to lose weight for way too many years. I have RA and Fibro and I just know that if I can finally dump even half the weight I need to, I will probably feel better. I suffer in pain every day, but I don't think I have the RA/Fibro has bad as some people, and for that I am so grateful.
Looking forward to participating here and getting to know you all.
~Ready~0 -
I can understand how you feel. My fiance is fine about it - very supportive, so i know I can talk to him about my pain. My friends and colleagues though - I feel guilty and ashamed if I mention the pain, because I feel like they're sick of hearing about it, and aren't going to offer any advice.
There's a group on facebook called "surviving chronic pain". They're a very supportive group, and you can submit anonymous questions if you need some help.0 -
I too suffer from chronic pain and fatigue (FMS/CFS/ME) and all the horrible head trips that go with it. I am lucky that I was approved for disability and no longer have to work, but just living from day to day is enough hard work for me. I have secluded myself from the world because I feel so weak and ashamed. I no longer have friends, other than on FB, but I think it's easier this way, because I don't really have to live up to the expectations of others, except for my own and my family's. It's hard to live in a house full of people who have "normal" pain and "normal" fatigue, because they assume that I feel like they do, and I cannot explain to them that merely taking a shower or holding a book can make me need a three hour nap, or that putting air into my tires will cause such mind numbing pain, that I will lay in bed, moaning and screaming in pain for days. It's hard to think better of yourself when no one else will. And besides my significant other and my kids, I have lost everyone else, my mom, my dad, etc. So I always feel so alone, and scared that I will end up alone and broken and no one will care. My hubby says I need to let go of who I was and embrace who I am, but honestly, who I am is a weak, fragile, emotional basket case. Who wants to embrace that? I am trying to improve my overall health and am hoping that some of the benefits of this will be weight loss, less pain, and more energy. We shall see. I have gone gluten free, grain free, and dairy free. It has helped some. I get excited over the smallest things, like my 6lbs weight loss, considering that I am quite sedentary, this is amazing. Also, I get all proud when I can cook dinner and it doesn't take 3 hours and everything tastes good, because cooking is a huge expense of energy so when I'm just looking out for me, I go with hemp protein drinks and raw spinach covered in something lean and high in protein, like tuna, so my family has no idea how lucky they are to get prepared dinner most nights! I try to keep busy so that I don't have so much time to brood, but I'm pretty good at brooding. I don't expect everyone to "get" me, but it'd be nice if a couple people out there did get me, I'd feel so less lonely and I think it would encourage me to keep at it.
You're hubby is right though. If you are going to be able to face your problems and find ways of coping, you need to first acknowledge who you are, what you are feeling, and that it's ok. Be kind to yourself. I'm glad you feel proud for the things you achieve - build on that, and do some small things that you can cope with.0 -
I'm with you Katie!
One of the biggest breakthroughs for me with my fibro was realizing that depression was playing a HUGE part in my pain! And it took a couple months into therapy for me even to admit that I was depressed. Many times we would just say that I was "exhibiting depressive symptoms" because it was easier to say that than admit that I was dealing with a very difficult mental problem.
BUT, once I was able to see that it's not a sign of weakness to say that you're depressed, but rather an opportunity to show what strength you have to deal with it... life was SO much better. I found ways to work on getting better sleep, I was able to start exercising again, and as the goal of MFP, lose weight and become healthier again, mentally and physically.
I don't think you have to necessarily "embrace" having mental health issues, but at least recognizing that they are there and that you CAN do something about them is very empowering. Best wishes on your journey to health inside and out!
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I too suffer from cronic pain and clinical depression. I have to work to support my family and many days it is all I can do to get out of bed. Some days the depression makes me want to stay in bed, other days it is the pain. It can be so hard to rise about the sadness. It is almost impossible for our loved ones to even begin to understand this. Having pain (even intense pain) for a few days does not even come close to what it is like to live with it day in and day out for years. Also feeling depressed due to life events is not anywhere near the feeling of clinical depression. They just cannot wrap their minds around what we are dealing with.0
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I think everybody with chronic pain feels that way.0
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Hi Becky. I have had Fibro for 10 years now. I wanted to let you know that I have a Fibro support page on Facebook called Fibro Comfort Corner. We are a small group and everyone there understands what you are going through. I understand how you are feeling... I have been there and sometimes still feel the same. I hope you check my page out... it has helped me so much! Take care... Hayley0
