Anyone else feel guilty/ashamed for being so tired all the time?

Discussion in 'Fibromyalgia Main Forum' started by gladone, May 11, 2006.

  1. gladone

    gladone New Member

    Hi all,

    Does anyone else feel as guilty as I do for feeling so tired????

    I hate day's like today when my energy level is so low I accomplish nothing. Worse than this though is the fact that I feel ashamed of myself.

    Today has been a tough day for me. Last night I got zero zzz's on the sleep scale. So, of course today the energy level was ten times worse than normal (which can be low on a good day).

    Of course when I have sleepless nights I try not to nap the next day for two reason's:

    1. I still buy into the old idea that you should avoid naps to try and stay on a sleep pattern (no matter how bad it maybe).

    2. My dear husband works long hard hours because I don't/can't work.

    I can say openly that #2 is the root of all my guilt. I figure why should I relax/nap when he is working his tail off. My husband works 10-14 hours a day, starting at 4:30a.m..

    THIS DD IS A STINKER!!!!!! Not only has it brought pain and fatigue to my body. Worse than this it has given me a sence of guilt and shame in my mind for which I am having a hard time dealing with.

    I know I can not be the only one who is dealing with this issue. This post is the only way I have of talking about ot thinking through this terrible fatigue issue.

    How does anyone reading this cope? Any words of wisdom would be a God send.

    Thanks for allowing me to share,

    Gladone





  2. rosemarie

    rosemarie Member

    I have a husband who has dibeties adn he still wroks 40ok colser to 50 + hours in a week for his job and then works around the house and does wleding for others part time. Me I think I have done something major when I have change the sheets on my water bed.

    He works so hard and me well I wake up and load the dishwasher and take the morning pain meds and back to sleep I go. I wake up about noon and unload the dishwasher , do some laundry and then I sit down and watch TV but for some odd reason as soon as my butt hits the couch my eye lids close and I am off dozing again.

    I really think that if the phone didn't ring and I did not have reasons to get up I would be sleeping all day and awake all night. IT is the pits, Rosemarie
  3. butterfly8

    butterfly8 New Member

    I can relate to how you feel. I have a good Catholic sense of guilt of this cfs stuff has really found the spot.

    I feel guilty because I am unable to do any exercise (maybe if I try really hard I can syndrome) I feel guilty because I have put on weight (even though it is thyroid related), I feel guilty because I am unable to work (even though they carried me out).

    You name it - I can feel guilt over it. I have been disabled for 8 years now and I still have to talk to myself often to rationalize this.

    Fortunately, one of my docs. understands. He gave me a saying that helps me a bit and it might help you.

    "You keep thinking that you can play basketball and you keep trying to. Don't you realize that you have a broken leg, even if no one can see it."

    This might be a bit wierd but it does help me, especially when I see all the govt. sponsored ads telling us to get active and get out there and get healthy. If only........

    I know how you feel - I can sympathise, but unfortunately, like you, I cannot solve the guilt and frustration.

  4. LittleBluestem

    LittleBluestem New Member

    Staying awake all day long just because your husband has to does not benefit him in any way. He would benefit more in the long run if your health improved. I don't think that depriving yourself of sleep is going to improve your health.

    My uneducated, non-medical opinion is that the regular sleep pattern bit does not apply to those of us with CFS. I see nothing wrong with napping so long as you are also able to sleep during your regular night hours. If you find that evening naps keep you from going to sleep at night, take your nap(s) earlier in the day.


    Oh, and I do feel ashamed of how little energy I have. Just yesterday my first impulse was to volunteer to do a job for an on-line group to which I belong, since I am qualified to do the task. Then I realized that I am barely able to do what I need to do now. No way could I be depended upon to do this, too. I hate being an undependable person!
    [This Message was Edited on 05/12/2006]
  5. petsrme

    petsrme Member

    I can really relate to how you feel. My husband is on call 24 hours a day 364 days a year. He works all the time so he doesn't understand how I can sleep so much. I just wish he could know that I am not doing it because I am lazy. He tries to understand, but I know deep down he doesn't. I do feel guilty, but I have learned that if people can't accept it that it their problem. I am me and that is that.

    My biggest guilt comes with my child. I try to do all I can, but I just can't seem to live up to my old power house self. I was the ultimate mom volunteering and going to everything. I just can't do it now. She is 17 now and I try to do all I can, but it just doesn't seem to be enough.
  6. Strawberry94

    Strawberry94 New Member

    Yes! Guilt all the time.

    I used to have low energy as a child and I had frequent ear/throat/sinus infections before hitting puberty. Puberty seemed to give me a bounce until age 26!

    I also have had IC pain my whole life as long as I can remember. I was a small child in the 70s back when bladder pain without bacteria was seen as "anger" being expressed through the body. I was lectured again and again by the docs that I just needed to set my mind to it and get better. They said if I wanted to be better I would be. I felt so ashamed and guilty that I did not get better through positive thought like this.

    When I had sinus pain at age 10 they made me see a child psychologist, he was a friend of the sinus doc and he interviewed me and he said "There's nothing wrong with her, she's just a little girl in pain."

    That still was not good enough for my family doc!

    They had to take me out of PE because the teachers did not like me having to go pee so much afterwards, they felt it was disruptive and encouraged the other children to want to go too. I tried to limit what I drank but then would get bacterial infections. So the doctors pulled me out of PE and yet they tisk tisked over the whole thing and made me feel so guilty about it all. Everytime I had to get up to pee frequently at night, the parents with the "You really have to try and get better. This has to stop, you need sleep." Guilt, shame. Ugh.

    I felt so bad. I hated to think I was that sort of person. I still feel so much guilt when I am sick, especially now with this DD that I can't push through.

    I could push through the IC pain and still work and go to college. I can't push through this vertigo, nausea and crushing fatigue, and all the rest, it is just too much now I have hated myself so much over it.

  7. jenni4736

    jenni4736 New Member

    I have the guilt too. I have three kids 5-15. My nine year old came home from school Thursday with a card for me for Mothers Day. He was so excited he went a head and gave it to me.

    On the front of the card was a vase and flowers (made of paper). He said he had written something on each stem and that I could "redeem" a flower for a favor from him. EVERY FLOWER HAD "LET MOM SLEEP LATE" on it.

    I wish I could say I thought it was sweet... but in reality, I just felt guilty.I know he meant nothing but love, but it stung.

    It is hard to cope. It is one of the reasons that the depression winds itself up in this DD. We are tired, we feel guilty for being tired, then we are too tired to feel guilty.

    I just try to do what I can, when I can. I make great moments on the good days. I express myself to my loved ones with cards and notes. I still write notes to my husband in lipstick on the bathroom mirror and notes in the kids lunches. I thank them for their support and love and I try to "take care of them" when I can, just small things that are important to them.

    I try to keep the guilt at bay, it doesn't do any of us any good. If I stay in the guilt, I might miss the next great moment, and I DON'T want to do that.

    jenni
  8. sharon5650

    sharon5650 New Member

    Oh Yes I feel it too !!!!!!!!!! terrible isn't it ... I try to fix myself up before my daughter gets home from school sometimes. When I was growing up I remember coming home from school and my mom was so sick too, and I hated to see her sick and sleeping all the time. Deep down inside of me I never wanted to come home and see her looking so awful, she never was dressed, she hadn't brushed her hair...and I often think about how I felt. I understand now, she had this fibro/chronic fatigue, but back then no one understood it at all..(poor mom) she suffered terribly, and no one believed her...But today I suffer so much guilt for my mom, and now me...laying here like this at times, like a beached up whale on a beach...no energy to do a thing sometimes (then times so much energy) right now I am in a relapse just waiting for it to pass. Thank-god my boyfriend only comes on the week-ends, I try to pull myself together, if only a bit anyways. I hate the way I look and feel when I am like this. But I always say to myself ...."This to shall pass" as for me it does.
    Sharon5650 god bless you.. Try it !!!
  9. AnneTheresa

    AnneTheresa Member

    I relate because I felt that way for several years, until I determined that feeling guilty was a waste of my time & energy not to mention that the guilt was unwarranted.

    If you can manage to change your perspective it would be a worthwhile endeavor. I worked through my feelings of guilt in therapy, by using positive affirmations and sharing my feelings with others who live with similar issues. It was not easy but I feel much better in many ways since I resolved the issue.

    Of course, once in a while, I feel some guilt but I usually manage to turn that thought around before it does any damage to my self-esteem.

    God bless,
    Anne Theresa
  10. erfula1

    erfula1 New Member

    But it is still hard sometimes when Hubby asks me if I want to go with him to see so & so and I don't feel like going. He is very sweet and understanding and that helps so much.

    I am still reasonably active, not right now cause I am recovering from broken ribs, but I still feel guilty sometimes. It's usually concerning my son. He is 12 and he tries to understand but he has said several times "I hate this stupid Fibromyalgia!!!" I have to agree with him.

    I just try to do what I can with him when I can and even when I can't do something active with him I make sure that we talk a lot. He is a good kid and I feel bad for him cause he has 2 sick parents. Hubby has Crohn's Disease, IBS, colitis, rhuematoid arthritis and a leg amputation. I had a sick parent growing up and it was hard.

    My dad always took his illness and pain out on us though and I try really hard not to do that with my son. Hubby tries hard too. I grew up with a lot of resentment toward my dad, but now I understand him so much better. Unfortunately he passed away in 2000 so I never got to tell him that.

    I still work, but I feel guilty sometimes when I have to take a week off from the truck when I know that we could use the extra money. I am lucky to have found a job that will allow me to do that and I have learned that is better to take the week off than to get to where I can't work for a month. I am going to do it as long as I can.

    It's easy to say, just don't feel guilty, but it is very hard to do it. I think it is something that anyone who deals with illness goes through. It helps so much though to have an understanding partner. Sometimes I even feel guilty that mine is so understanding. But then I think that I have always been understanding with his illenesses even before I was ill. That is what a relationship is all about.

    We can only do what we can do though. Pushing ourselves further does more damage than good. We just have to focus on what we can do instead of what we can't do.
  11. Guilt, oh yeah! All the time. I try not to complain to my husband and seem more energetic when he is home, but its so hard. I am so exhausted from hardly ever sleeping good at night. I can't remember the last time I had a good day with this dd. I sure don't have any words of wisdom, sorry.
  12. Jordane

    Jordane New Member

    Gladone,
    Yes, I feel the guilt so strong!!! I feel like I gave up, should be out there trying to wrk.

    My hubby is great.I am the one grumbling and complaining, saying I should have gone back to wrk.

    But he says, "If you go back even one day, you will be in bed for the next 5, so no, you cannot wrk""So get over it!"

    But it could be months before I see any disability money, If I get it.They called and said it has gone on to the medical dept.And can take up to 4 months.
    And money is tight,with him the only one working.

    I know there are a LOT of you going thru this also.
    And I send you ALL, Very gentle hugzz!!!

    Jordane
  13. gladone

    gladone New Member

    Thanks to all of you who listened and replied. I knew that this would be the place were I would be understood.

    I appriciate all the good ideas on attitude and perspective. I will do my best to keep those in mind the next time the pitty party tries to roll into town.

    Keep up the faith and the fight!!!!!
    Gladone
  14. NyroFan

    NyroFan New Member

    Gladone:

    Sometimes I feel guilty about being tired and in pain all of the time. I have revolved my life around these DDs and it really helped to do that. I am mournful of the losses I have and will have in life and sometimes get sad that I lost a husband and friends. Who wouldn't get down?

    I say my prayers and let the chips fall where they may.
    I have good cyber-friends and that keeps me going, like this message board.

    And it is funny, sometimes I feel completely relieved of guilt. It comes and goes. I accept what I have and I have gotten angry and grieved and all, but I do backslide from time to time and have to recognize it.

    nyrofan

  15. Tigger57

    Tigger57 New Member

    YES! YES! YES! YES! AND YES!

    I guess in some ways I'm luck that i live alone because i don't have to burden anyone else with it, but on the other hand it is just hard to survive.

    The time has come where I have to cancel my medical insurance and try and working something out with the mortgage company. I'm still not sure that I will be able to keep the house, nor am I sure if I will be able to function because I will have decreased medical support and probably won't be able to help me pay for the medicines that help me to keep going. It sucks.
    Tigger