Anyone feel guilty (like I do)?

Discussion in 'Fibromyalgia Main Forum' started by Echo2, Jun 28, 2003.

  1. Echo2

    Echo2 New Member

    I posted back on the 23rd, just got back online. Awww, you guys made me cry, you were so caring and kind with your replies! I see why the community gives strength and hope. My husband and I are in that middle-land of money, not poor enough to qualify for any aid, not wealthy enough to afford insurance or vacations. I have decided to go to a doctor on your good doctor list (thanks so much for that list)and my husband, who is trying very hard to understand, says use the credit card, bless him. But I feel so horribly guilty!
    I am guilty when I don't get all the things done I used to. I am guilty when I hurt so dang bad that I get grumpy. And worst of all, I feel so guilty when I sit in the office for 3/4 of the day (we are self employed) and cannot get anything done because I cannot think! I hate this, and I hate myself for being this way. This board may just change this way of thinking. I know I need to change, but I cannot seem to stop feeling this way. I am ashamed of myself, and I know my husband thinks I am some sort of hypochondriac even though he is trying to be patient.
    So I am wondering, how did any of you deal with such feelings? I suspect I am not the only one who has had to deal with these guilt and shamed feelings. Thanks for listening.
    [This Message was Edited on 06/28/2003]
  2. averilpam

    averilpam New Member

    it's such a destructve emotion isn't it?
    I think it's important for you not to feel guilty if only because it will just seem to justify any feelings your husband has that you are a hypochondriac. Chances are he doesn't, so keep trying to help him understand, there is stuff on here you can show him.

    Put the energy you are using to feel guilty to better use!!
    I'm not having a go at you here, just saying we have a right to be a little selfish when we are ill and entitled to expect some support, so long as we aren't wallowing in self pity. It certainly doesn't sound to me like you are doing that, as you are trying so hard to keep doing all the stuff you used to do.

    We have no reason to feel ashamed either, we didn't ask to get this sick, and probably the nearest any of us came to being instrumental in the causes of any of it (other than possiboly having the bad luck to be born with a genetic tendency) is from consistently putting other people first to the point of wearing ourselve out.

    well that's my rant on the subject of guilt!!!!
    take care of yourself,
  3. zggygirl

    zggygirl New Member

    I wish I had some profound advise for you, but I have terrible guilt also.
    American Society has such a powerful work "ethic" that if we aren't working, we are nobody.
    When I "lose" a day (again) to pain and sickness I just feel like I have wasted another day. If I feel even a tiny bit better later in the day, I end up vacuming or doing ANYTHING to feel like I am being productive. Sometimes the only thing I can do is clean cause I can't think. But then I feel more sick and more pain. GEESH!
    It is definatly a hard lesson to learn.
    Just wanted to say I understand.
    Take Care,Ziggy PS I'm not sure if this should be in Chit-Chat instead...sorry if so.
  4. BethM

    BethM New Member

    The guilt hits every so often. (like last night... sigh.) There is so much I cannot do anymore, even though I've been feeling pretty good lately, with the thyroid meds on board. Even so, I have only so much energy and can only do so much before the pain starts. I even have to limit my treadmill time to 30 minutes, and even that is pushing it some days. My brain is willing, but the body pays me back 10 fold if I do too much.

    We are going on vacation next month, and I just hate that the pace of the trip will depend on me. My wonderful spouse is loving and caring and considerate, but still, it weighs heavily on me that we won't be able to do as much as we'd like, and it's all because of me. I know I'll have to pace myself, or I'll waste an entire day just resting! Thank G-d for Darvocet...

    Echo, you are definitely not alone here. The trick, for me anyway, is to sternly tell those thoughts and feelings to shut up and go away. Works, occasionally, sometimes I just need to feel like that for awhile. Sometimes I feel like that when I don't take the pain meds and don't realize I'm hurting as much as I do, and then feel better in mood and body when the meds kick in. Sometimes it requires chocolate, too! *g* Stay tuned to this board, lots of great people here who are wonderful morale boosters.

  5. mstg

    mstg New Member

    I know exactly how u feel and I wish I had good news for u but I dont. Im in the same boat as u except I dont have a family its only me. I just feel guilty for being alive right now. I am so depressed even though I know the depression will pass...

    I can say thank God that u have a husband who is at least trying to understand...If you are anything like me some days are not as depressing as others so God Bless you and know I also feel your pain. Trish
  6. pearls

    pearls New Member

    I've been a feeling a lot less guilty since I've started embracing the idea of doing 50% of what I think I can do, along with the understanding that if I deviate from that I'll end up in worse shape and even LESS able.

  7. jka

    jka New Member

    i use to feel guilty for not being able to do all the things i use to be able to do.i couldn't go out and pratice soccer with my daughter,most nights i couldn't even fix dinner.yes i use to feel guilty-but then i realized none of this was my fault.i didn't ask for this dd.i decided people would have to except me for the why i was and so would the floor needs to be vaccumed,it'll be there tomorrow.

    kathy c
  8. zggygirl

    zggygirl New Member

    Hi again,
    Just wanted to say I appreciated the posts to echo2 and her shadow (me)!
    I had a chuckle about the Mel Gibson thing {G}
  9. RAAC

    RAAC New Member

    Hi Echo2
    Please don't feel guilty, if anyone should it should be your hubby because I know I feel guilty that I can't help my wife with the pain. I rub ostrich oil on her body but I don't think thats enough. She has only been Dxed on June 5th but has had it for about 3 yrs.

    She can't work and feels very guilty about that but I tell her we can manage. Barely but we manage!!

    She cries almost everytime a bill comes in the mail saying befor I hurt myself We had money to do what ever we wanted but now we have troubles filling our fridge.

    I tell her to reverse it what if I was sick and you were the healthy one!! she says "Thats Different"

    So try to reverse it with your hubby and maybe that will help!! Good Luck
  10. dolsgirl

    dolsgirl New Member

    I've certainly had many moments with those feelings. Does your husband read up on FMS and understand. Mine does & it is great to have an emotionally supportive spouse. The moments eventually pass with the support. And you can always come here. dolsgirl
  11. kmelodyg

    kmelodyg New Member

    I hear ya! I have been struggling with this all my life. It stems from being raised by an emotionally abusive father who made every situation into something that I should feel guilty about. I am 25, and am disabled at this point. I live with my mother who has MS and FMS and is much worse than I am, my 20 year old sister and her baby. I used to be the one who took care of everyone. I used to always be financially secure. Now I am neither. I hate having to ask my mother for things, I hate asking my sister to do things for me. I hate that I can;t hang out with my friends anymore. I hate that I can't work anymore. I always question if I should just push myself harder and go back to work. But then reality sets in. I will lose my job faster than I would find a job. So, I have been working on trying not to beat myself up about it anymore. It is out of my hands. You need to try to be realistic with yourself too. Knowing your limitations is the key to this condition that we have. Make lists of things that HAVE to be done, and things that Kind Of need to be done if you have extra energy. Also, since I have been on my antidepressants, that has gotten not so hard for me too. I worry too much. So now, I just try to stay positive and ask for help when I need it. Stay strong hon!!!

    Big Soft Hugs,
  12. KayL

    KayL New Member

    to feel good about the 25% of the things you CAN and DO get done?

    I was raised to feel guilty. LOL It sounds strange, but it's true. Just one of the things you discover about your upbringing when you're old enough to help yourself and improve your life, if you know what I mean.

    My health has been on somewhat of a decline since around 1993. I was 37 years old then, too young to be *falling apart* or so I thought. For quite a while, when it seemed like there was always one thing after another wrong with me, I felt guilty, felt like I was letting everyone down, felt inferior, insufficient, you name it. Then I sat back and took a look at the things I actually did, on a day to day basis - holding down a full time job, being a single mom to 2 kids, managing to keep my house and my bills paid, chauffering 2 kids to extra-curricular activities every evening after work, getting the house clean, the clothes washed, the groceries bought, the meals cooked, the lunches made every morning, the yard mowed. True, many of these things were not being done to the standards I had set for myself, and many things began to slide. If nothing else, I have drastically relaxed my housekeeping standards! LOL

    But my point is that if I had looked at a total stranger, who was sick, and managing to do those things, I would have been somewhat impressed. I stopped worrying about what I could no longer do and how it was affecting everyone around me. I started concentrating on what I COULD do and how THAT affected me and everyone else around me. And I found that when *I* was feeling positive about the things I COULD do, no matter now little they were on a given day, that those around me - my boss, my husband, my kids, my friends - felt positive about them too.

    Try not to feel badly about yourself for not being wonder woman, just allow yourself to go at the pace you CAN, and feel good about the small things you CAN do, even if it's just one or two things a day. I promise you this, when you can do that, when you can accept your illness and your limitations without making excuses for yourself, you will be happier, and that will *wear off* on those around you.

    I didn't mean for this post to sound like I was preaching, so I hope no one gets offended. I realize some of us here are sicker than others. NONE of us asked for this and it's no one's fault. Be proud of yourself for who you are and what you CAN do. With luck and good medical treatment, things will improve.


    [This Message was Edited on 06/30/2003]
  13. Echo2

    Echo2 New Member

    I am printing up this whole thread for my husband to read. He actually is trying hard, and is a good man. Just not used to having to do those zillion little things I suddenly need help with, and I get tired of asking for help..
    to Trish - I was so touched by your note. I cannot get you out of my mind, and I want you to know that you are very, very important to the world. You will find the reason soon, I feel sure. Something that might help is volunteer work...yes, I know we can't do much, but there are groups out there who sponsor "phone pals" to seniors who are alone, etc. Could you volunteer a couple hours a week to call a few lonely people? Retired Senior Volunteer Programs, Inc. (RSVP) is one such group. I am only 46 and I volunteer for them. It helps me keep my own DD in perspective as there are so many others worse off than us, plus they NEED you! You are not alone, we are here in this group, and there are folks out there you can help, no matter how alone and bad you feel right now. Grit your teeth through the depression, we can't help getting that sometimes. Look to better days, and if that doesn't include feeling better, then maybe it can include helping someone else feel better...which makes us feel better anyhow!
    Just having this board is such a lifesaver!
    Love to all,
  14. bluebirder

    bluebirder New Member

    Oh man do I understand the guilt thing. To the point I let myself be emotionally/verbally abused by my husband. I am working on efforts to change that. I have no choice but to deal with my physical issues but the degradation from him I can get away from.

    I am glad your hubby is trying to be supportive. In that case he will still have a rough time and you will feel some guilt but it will be tempered by his ttrying and the level of education you can both get. I wish you much luck here. No matter what comes your way if the two of you hold to each other then you will make it.

    I will keep you in my prayers that he learns what you need to emotionally supported. The best he can do is be honest enough to say he doesn't understand and maybe disagrees about something but he loves you and cares and wants to learn how to give you the help you need without taking away the pleasure of doing what you can.
  15. Dara

    Dara New Member

    things I can not do anymore. I've always worked outside the home, plus took care of the home, kids, my mother, everything. Now I feel totally helpless and very unproductive. Problems is that mentally I still think like a normal healthy person. I sit down and make up one of my "to do lists", they are so long they wear me out just looking at them. I know that my husband does not understand any of this. He will make little comments about my not working anymore and that really ticks me off. I've always worked 40 plus hours a week and he has never helped me with anything around the house. His job is to work and mow the lawn. WOW - wish I was healthy and that's all I ever had to do. I know that I/we should not feel guilty, anymore than if we had a terminal disease and couldn't do anything. But, even though I know this, those guilt feelings still keep popping up.

  16. Dogtired

    Dogtired New Member

    Reading this thread made me wonder if there are any supports out there for spouses, families, friends of people who have these DDs? If they corresponded with one another, it sure would go a long way in educating the ones who think it is just YOU and all in your head.
    It is a huge change for them, (family, friends)and having a place to talk could help take the pressure off.
    Just an idea.
    -Kristi :)
  17. Dogtired

    Dogtired New Member

    So sorry to hear how down you are right now, I am single, too and live with my pets. I am pretty much on my own with this DD.
    My family (who I suppose I should be grateful for, but don't always feel that way) is inconsistent, semi-supportive, so I'm not sure what I will get (a mix of: sometimes very kind, to fussing over me in ways that often make me feel yucky, followed by no contact and completely ignoring the fact of this DD, etc.), so I can probably understand some of what you are feeling. I struggle a lot with depression, too, and feel guilty about not being as productive as I used to be and even just 'taking up space' when I am really having a amazing answers here, just want you to know that you are not alone. I am working hard at accepting myself as important and worthy just because I am here on the planet...another version of "you are a valuable human BEING, not a human doing". Hope you are feeling lighter SOON.
  18. Shirl

    Shirl New Member

    That has no 'guilt' about this illness??? I see that Skeesix is on my wavelength, whats to be guilty about? If we had diabetes, heart problems, cancer, or any other well know and recognized illness, should we still feel guilty? I think not, so why feel guilty if you have CFS/FM.

    Don't let the 'syndrome' on the end of it fool you, its just a word that the medical profession uses when they don't know what is wrong either. Heres the definition of that miserable word;

    'A group of signs and symptoms, that occur together and characterize a particular abnormality'.
    I would love to know when this word was 'coined' and who coined it. Anyone know?

    I do not work, and do not feel guilty about it either. I did work, loved the different jobs I had, including my own businesses that I had twice. What I do feel is resentment that I can't do these and other things that I used to do, but no, not guilt.

    Like Skeesix said, having the energy to take a long soothing bath with all the good smelling stuff (that sits in the bathroom unused as I can't handle the odors anymore), just because I want to do it, and to get out of a tub without feeling like I have got to go to bed because such a simple thing in life is exausting instead of a pleasure like it should be.

    Washing my longhair is a luxury, it zaps my strength for the day to wash it and dry it. That does not include a hair-do either! I just braid it or tie it back these days. That should be just part of my day, not a special luxury.....

    These are debilitating illnesses, it steals our lives, we are not contributing to this, its happening to us. Why the guilt?

    You need to do some serious thinking about yourself, and not what anyone else thinks about your illness.

    My husband did not understand when things started getting really bad, as I was a do it all kind of woman, rarely asked my kids or husband to do anything for me.
    But I started slowing down to the point where I could not cook a meal without being in bed for days afterwards.

    I read him the entire book by Devin Starlanyl, he got chapter and verse for breakfast till we reached the end of the book. Before I got half way through, he was cooking breakfast for both of us. I am a total klutz in the morning like most FM people are.
    I spilled hot coffee, burn myself frying eggs, broke dishes, etc. Plus I am a total grump when I wake up for at least an hour.

    His work takes him away from home weeks and sometimes months at a time. So when he does get home he cooks food for me that I can eat when he is gone, and we mostly eat out when he is here. This man could not boil water when I married him. He is a pretty good cook now.

    You have to take one task at a time, do it all, then go to something else. Do not try to do multi things all at once, it just gets confusing for us.

    You will be alright, just let your husband know how you feel, and have him read what is happening to your body and your mind, lets face it our thinking process is not so good anymore.

    But the main thing is, stop the guilt-trip, you don't deserve it, and its only going to make you mess up more because you are letting it get in the way of your life and selling yourself short.

    You are an important person, remember 'God did not make any junk' and you are one of His perfect creations that He is proud of, so act like it.

    Shalom, Shirl

  19. Echo2

    Echo2 New Member

    And I am glad you do not have guilt feelings to deal with. Someone said they were raised with guilt, which may be a very valid cause...I was, too. My mother, gone less than a year now from lung cancer, dealt with guilt feelings due to her smoking. It is not uncommon for people to have such feelings, no matter what the disease. But you are so very right that we should NOT feel this way. Yet we do. Maybe it is the way we were raised. Maybe it is that this DD is so invisible, and sometimes we seem just fine. This board really helps by allowing me to confess and describe my feelings, which are then validated by others going through the same thing. From this, and from messages more bracing like yours, we gain strength and resolve. Thanks.
  20. Staceymarie

    Staceymarie New Member

    In the beginning, I felt really guilty because I had always been the type to do everything and "was" a perfectionist. Everything had to be done just so, everything had its place, weed the flowerbeds once a week, vacumn daily, mop every other day, iron everything, make-up had to be perfect, all clothes had to be get the point. My family became accustomed to my ways and I think they reaped the benefits because I never allowed them to do anything because it would not be done the "right" way (my way) LOL. The same way at my job. Believe it or not, I took pride in being that way! As I sit here now, there are toys strewn on the floor, a cobweb hanging above my fireplace, can't remember the last time I dusted (maybe over a month ago, and forget the ironing unless it's a necessity (like for work). I felt so guilty and totally resented that I was unable to do those things... but no more. Working full time and making sure everything was "perfect" was killing me and I now realize that life was just passing me by while I was busy trying to make things perfect. Now my son and his dad fold clothes, cook dinner, clean-up behind themselves (most of the time). It is not anything like I would have done it, but who cares!! They have both actually learned to be self-suffient. My son (who is 11) is turning into a little man. Since I've slowed down I HAD to get my priorities straight. Although during a flare I cannot do many things with them, I do other things like watch movies, play board games with him, etc. I do resent this DD and would do anything to make it go away, but it has taught me a valuable lesson. Sure we can't do the things we use to be able to do, and we have no choice but to modify our lifestyle. Most of the modifications aren't ones I would have chosen. But learning what is important in my life was a lesson well learned. If it went away today,(God willing) I know in my heart that I would never revert back to the way I once was. I guess my point here is that although I hate this DD, I am trying to focus on the one positve thing it has taught me.