Feeling SHAME

Discussion in 'Fibromyalgia Main Forum' started by CreateHope, Sep 12, 2003.

  1. CreateHope

    CreateHope New Member

    After reading the messages about toxic people in our lives, I have come to the conclusion that I am the most toxic in my own. I live with my mom who is willing to do just about anything to help me. Her only fallback is she forgets how miserable I am and seems surprised when I rarely go off on a tangent on how miserable I feel and how hard things are for me, like taking a shower.

    I feel like an alien. I don't have much of a life. I don't go out much. The grocery store would be a major event for me. I hate it 'cause I usually feel as though I'm just being lazy.

    Part of it is most likely my upbringing, in Maine, where people didn't air out their problems and were always busy. (At least in MY family.)

    I know I shouldn't play the comparison game, but my 59 year old mother, who's diabetic and has a heart condition is a full time teacher with over 900 students, and is perfectly okay fufilling her duties. Even after 6 surgeries, she just bounced back. I obviously didn't get my Fibro from her.

    If I look at my life as I live it, I find myself first thinking the words LAZY BUM. (OW!) How toxic is that? Most days it takes phenomenal effort to make myself get up and take a shower. I rarely feel awake and coherent. It's awful. So I end up hating myself for not being able to "pull myself up by my bootstraps" as I was told growing up.

    I'm angry at myself for staying up late (that's when I feel best) and sleeping half the day. I hate that I've become a TV freak. I got accepted into an Ivy League school! What happened!!! My sister is learning how to kickbox and my brother rides a harley. Both of them finished college. I feel so inadequate because I never did.

    In Maine, we pretty much measured our worth by how much we could accomplish and how well we accomplished it. This worked fine for me until I graduated from high school in '89. Thirteen years later I still can't erase the old messages out of my head. Even though I live in the midwest now, the only people I see on a regular basis are my mother and brother. I don't think this helps. Only when I'm around other FM people do I seem to be able to give myself permission for being okay with who I am right now.

    I half feel too ashamed to post this, but what the he--.
    Tired of being my own worst emotional enemy.
    Kate
  2. IntuneJune

    IntuneJune New Member

    Ahhh, yes, shameful feelings. I remember a lot from childhood. And if your are deeply seeded in shame, it may beyond anyone's advice here.

    Last night, Dr. Phil was on TV about the weight issue. So he was on my mind this morning and when I read your post, what came to mind was "And how's that working for you?"

    It's hard getting out of that bed, hard taking that shower, but it is simply not a choice to stay in bed. The more bedtime, the more deconditioned your muscles become. Then you have more problems than fibro.

    Three and a half years ago, I could barely move, revisited my rheumy (had been her patient for FMS over 20 years) and asked for professional help moving my body as I could NOT. I felt I was doing more harm moving muscles. Thankfully she agreed and I took my script to physical therapy. Now I am moving again on my own. (Not all PTs are up to speed with FMS patients, one needs to do their homework.)

    Coming to the board is wonderful, being around other FM folks, the only ones who can really understand our pain. But the bottom line is you have to do it yourself. It's not fair. But that is the bottom line. Turn off the TV, read a good book. The TV can become all consuming, addictive also. If you can do that, you have ACCOMPLISHED SOMETHING!!!!!!

    I admire your post, you have spunk, Kate. Consider today the first day of a new journey. There are things you can change about your routine, obviously your old one is not working for you. Good luck! Fondly, June
  3. smoke

    smoke New Member

    Hi and welcome to the board. I know what you are going through along with everyone on this board. I grew up on a farm and have been working since I was 8-9 pretty well full time. I was full time military when this DD hit me, my dream of a life time, rural MO raising a wonderful family and enjoying the military, then it was like my life ended!! I let it get me down for quite a while then I started getting out just riding to town with my wife, then I would go into the store with her, just start out slow and keep building up from there. Just do the things you like to to start with. I enjoy gardening and have not been able to do it much this year. I have four wonderful kids that put it in for me and helped keep it weeded and it helped us all. The kids got educated and I feel a lot better. You mentioned living in the midwest, I live in Northwest Missouri (Albany), where are you at? Anyway, just keep your chin up and think, it really could be a lot worse!
  4. dumdum

    dumdum New Member

    I know where you are coming from, its so easy to get fed up with what you are limited to.

    Remember not to measure your day by what you consider normal, as we have to change how we view ourselves and our worth.

    I recently was forced to leave a job in which I took much pride and felt worthless as I relised that I measured my worth by my job.

    It took awhile to discover that I was not a job but a person and I started to look out for me and be selfish and say no. By doing this my health improved and I have now started a new job which is far less demanding.

    I have no friends as I have found people just don't understand when at the last minute you do not turn up due to feel unwell. I still count myself very lucky as I have the love and support of my family. Thank you for sharing your post.
  5. Mikie

    Mikie Moderator

    I am constantly recommending therapy on this board. We suffer changes in our brain chemistry which can cause anger and depression, as if our illnesses themselves weren't enough to bring these on. In addition, we are struggling through the grieving process for our old lives which we may never get back. Therapy with a good therapist can help tremendously. Good luck to you.

    Love, Mikie
  6. IgotYou

    IgotYou New Member

    I was going to write a sympathetic post telling all about the shame I experience on a daily basis because of my messy house, weeds in my yard, unbalanced checkbook, lazy weekends, and time wasted at work when I can't concentrate. But after reading the post by Intunejune (full of wise advice), I realized that I have been more motivated than I thought. I have made it my mission in life to feel better, and to be able to do all the things I used to do and dreamed of doing someday. And even though my improvement is coming slowly, it is coming and I am feeling like less of a loser than I used to. The disease may consume your body, but don't let it consume your soul. You can take charge of your life, taking little steps at a time, and you will begin to feel better about yourself.
  7. ja1grump

    ja1grump New Member

    Kate - I understand what your feeling! I was in the same boat in a way - I think maybe we all are or were. I was 27 when I was diagnosised. I had 2 small children and I couldn't take care of me let alone them. My family and friends were disgusted with me thinking I was not really feeling that bad. And there were days I would ask myself- "Do I really feel this bad" and the answer was YES I do! My kids walked all over me when I was sick. Their daddy divorced me. I Had to live with my parents - I got sole custody of my kids. Now my mother has fibro also, and she understands how I felt. People don't understand it at all! But I bet if they had to walk in your shoes for a couple days they would understand alot better. I can't give you words of wisdom or any Earth shattering advice. Just hang in there and take each day as it comes. AND you already feel bad enough without beating yourself up! Take care. Hope you feel better soon.... Julie
  8. Lana56

    Lana56 New Member

    Kate,
    Don't be so hard on yourself.First off it is not your fault that you have all this pain.You can change some things that are bothering you though.You can take little steps to change,but remember it is up to you.I know the TV story-I can tell you every show,what time its on,and can't wait to see it for myself.Well I have let go of making it my life and try to do something else I like-like reading,talking to a friend on the phone.You mention being in bed during the day and staying up late.Just recently I have told myself to go to bed early even one night and see what it is like to get up in the morning and get moving.It is easier to stay in bed,but your body needs movement more than you give it right now.Therapy was mentioned in other posts-it helps to talk with a therpist if it is possible to go.My therapist tells me to do one thing each day to help myself and change what bothers me.Motivation is hard when we hurt,but we are able to do something.One of my new things is to get up earlier to face the day.I suffer with depression and often just don't want to do a thing,but find a little push can do something for us.You have a battle to fight,but each time you win with one thing you are winning.Like Dr.Phil says "Is it working for ya".Sounds to me like it isn't for you right now and shame takes over.Be good to yourself-you deserve it and take a step to change some things.We all know it is hard and understand and here to listen too. Lana56
  9. loopyloo

    loopyloo New Member

    I felt like people cant see what hurts so they thing oh you look well, i went to a doctor last week who has give me a plan of getting better, taking each day 1 at a time and just doing 1% more each day.keeping a diary of how you feel each day and on a scale of 1 to 8 how fatigued you feel, he said 2/3rds of people get well and 1/3 dont, he also said if you dont move and just give up you will hurt more and gradually get worse by not moving about, but you have to take it slowly and dont over do things, so get a diary write down every day how you feel and start to do 1% more each day, odviously some days you will feel bad and cant do that 1% more so rest but dont give up and dont be ashamed you are still alive so start living again walk the dog if you havent got one then get one they will be your friend and you will get your life back.
    Be posertive.
    (((((((((big hugs)))))))))) Loopyloo xx
    [This Message was Edited on 09/13/2003]
  10. CreateHope

    CreateHope New Member

    Thank you all for so kindly writing back to me. I guess I didn't realize how badly I felt emotionally until I had it out on "paper." Ya know? As soon as my insurance gets straightened out (which hopefully should be within a week) I'm going to call my old therapist. Well, maybe I'll make an appointment beforehand. She hasn't helped me much with the FM stuff, because that wasn't what I was there for. But she is really good, and could probably help.
    I don't know if I am just fussy, but there's a fine line for people helping me and pushing me too far. I have had doctors who've pushed me too far and I got much worse and relasped badly. So I'm maybe too cautious, I don't know. I'd like to get better at reading myself; what I can and can't handle. Growing up gave me no experience to deal with that either.
    I would like to be more active, but I'm not sure where to start. Frankly, I'm scared, but I also am realizing that staying still for too long isn't helping either. After all my pain scale is off the roof today, and I didn't DO anything to provoke it. I will try to get an appointment with the rheumatologist here too. I think he has a waiting list, but who knows now.

    How do you all cope with dehabilitating fatigue? I'm not doing so well with that. Pain is easier to work through if I'm not fighting fatigue. But the extreme fatigue is new for me, as is the intense joint pain in my knees. I'm wondering if I have something else too, or if it's just the Fibro kicking in full gear.

    Thanks for all of your support. I'm trying...
    Kate
  11. jadibeler

    jadibeler New Member

    instead of feeling so badly about yourself. I never felt shame, just anger at the people who called me lazy and disgust at myself for being sick and the fact that there was nothing I could do about it.

    It's only been 2 months since I found out I was wrong about that and started taking control. This board has shown me where all my problems lie - and there isn't just one problem. Read EVERYTHING posted, going back before you started. Even things that don't seem to apply to you - I found my worst problems explained when I just peeked into some posts that didn't appear to apply to me! Then start taking advice and doing Google searches on the conditions you find mentioned.

    I started out by changing my diet, for instance. I also added magnesium (I can now sleep a full 8 hours), CoQ10 for energy, drinking lots of water and switching to sea salt. I'm waiting for blood test results for hypercoagulation, which I'm sure I have from the symptoms, and blood cortizol level for adrenal fatigue, which I'm also sure I have - a good example of that is feeling much better at night than you do during the day. I did the spit test for Candida and failed it miserably, so I'm adding probiotics and Oil of Oregano (or Olive Leaf Extract) for that. If I have the hypercoagulation, there's bromelain and doxycyline for that and the mycoplasms that cause the buildup of fibrin.

    Just the things I've started have changed so much, including that horrendous fatigue, my worst problem. I just learned that a psoas muscle problem is responsible for the only pain that really bothers me.

    The answers are all here, you just have to read, learn and start applying the knowledge to yourself. Therapy, yes, by all means, but just taking charge of your own recovery will help with that feeling of shame and helplessness.

    Good luck

    JoAnn
  12. carole128

    carole128 New Member

    Hi Kate
    Kate you are a VIP. Very Individual Person. Please be nice to yourself and say positive affirmations to yourself. How can other people like you if you don't even like yourself!
    I have many friends who try and give me a guilt trip by saying how busy they are and how they have pains and keep going. Sometimes I don't feel like going out or I feel too worn out even to make conversation on the phone. But the days I feel well enough to socialise I go out and catch up with my friends. Like you I find going to the supermarket really difficult. My husband does the weekly shopping and I go with him on the odd time I feel good.
    I always feel better when I am out in the fresh air and spend hours sitting in my garden or just pottering around doing one pot plant at a time. It took me 3 days just to do my basic house work last week. I always make sure I do what I enjoy doing most. I think life is too short to waste precious time doing things that people think I should be doing!
    Cheer up and have fun. Years ago I made up this little affirmation. I have a choice to be happy or sad.
    I chose happy and I am glad.
    Carole
  13. Sunshyne1027

    Sunshyne1027 New Member

    I am so glad you shared what you were feeling.. because some beautiful stuff was posted in response. I read it all, got some from it too.

    :)

    Love Sunshyne
  14. kimkane

    kimkane New Member

    hi hunny, look for my e-mail. love your fibro sister
  15. Juloo

    Juloo Member

    My mom was from NE, too. Suffer in silence -- or, you're not *really* suffering -- was what I learned, I think. Before I write this next part, the caveat is that now that I have a child, I know how easy this could be to do, and there were extenuating factors such as, she didn't witness the event. Anyhow, as an example of this, my mom once waited a week before taking me in to the MD when I fell off a swingset at my babysitter's. Yep -- the old arm was broken. She was pretty surprised...she thought I was complaining about it to get out of music practice.

    And I didn't find out that I had excercise induced bronchospasm (asthma) until I was an adult, because no one would take me seriously -- told me I was just out of shape.

    As to the extenuating circumstances, my father was sick a lot, and my mom saw a lot of sick people each dad because she worked for three doctors, so perhaps I was in her blind spot when it came to illness.

    But the message I carried away that I apparently still battle is that I don't deserve to be listened to. I still cannot *sit still* with any mental comfort. Must always be DOING!

    The counselor who I saw off and on after a miscarriage asked me to think on the following -- is it possible that I deserve to be loved just for who I am rather than what or how much I do? Certainly it makes intellectual sense to me, but I still don't *know* -- in my bones, in my psyche -- what in the heck she is talking about. A part of me just can't compute. When I look through my life for examples (and I think I've had a fairly good life), I just don't see many examples of this as the way that the world regularly works. It's so much easier to give it to others than to expect it for myself.
  16. Nannibel

    Nannibel Member

    I've learned that we have to become our own best friends........treat yourself as you would anyone else you
    knew who had this disease........be loving and compassionate to yourself , you can't wait to get it from others because it might not come...try not to worry about what others think, this is soooooo hard to do, and unfortunately some people are more "toxic" to be around.
    My extended family was really no different than most healthier people, they just didn't understand, didn't care to understand either, and their attitudes were more harmful to me than helpful. WHen my husband and I finally decided we at least had each other and didn't give a damn what others thought about us we started to become quite successful in our lives.......in spite of this disease....
    believe it or not, the healthy people out there that you think are so busy working sometime work "harder" not smarter. You don't necessarily have to have your health to make it in this world..........and to feel proud of yourself. Don't give up on yourself, even if getting out of bed is your biggest challenge.
  17. mamacilla

    mamacilla New Member

    kate,
    thank you for writing about your feelings.
    i used to be well acquainted with the "shame demon". i had a light bulb moment when i realized what i do is not who i am. we were born precious baby girls, and we still are!
    there are some excellent books out there on proper vs. improper shame. you may be carrying shame that doesn't even belong to you.
    everyone has said so many wonderful things!
    hugs,
    mama c
    ps----"proper" and "improper" are not the words i wanted to use, but the words i wanted don't seem to be retrievable at the moment!
  18. IntuneJune

    IntuneJune New Member

    You have some wonderful responses. You struck a chord with us. Thank you for your courage in sharing! June
  19. CreateHope

    CreateHope New Member

    I'm doing better now. Thanks Gracedances, for the above post! I appreciated your post the most..as to accept me for ME. After all, the hours I keep make it easier to do internet research; other times in the day my computer won't allow me to even read my mail, and it's a new computer!

    I think I was feeling so badly a few days ago when I posted this because the barometer shifted, and we got a frost here in Idaho.

    Weather changes = PAIN, which for me, generally results in a short lived intense depression. I wonder how many others who live in climates that are continually changing, have felt the same way?
    Certainly when I lived in California recently, I felt much better overall. No frost, no snow; quite nice!
    Kate