I am not lazy, I have fibromyalgia

By LanaPA Latest Activity February 2, 2011 at 2:04 pm Views 1,782 Replies 18 Likes 11

Lana

Fogginess, fatigue, and pain are a few of the major symptoms associated with fibromyalgia. All of these symptoms force us to need more rest and to conserve our energy. I have often told people if I rested every time I felt fogginess, fatigue, and pain, I would never get out of bed. Many of us push ourselves because of the fear of being called lazy and when we do rest or do less, that fear can come true.

It is not hard to believe that one of the biggest misunderstandings given to fibromyalgia sufferers is that they use the disease as an excuse to be lazy. This is definitely a touchy topic because many of us are trying to overcome the physical limitations posed by our conditions. Often times, it is those closest to you that give you the hardest time. It is the little criticisms like why your home is not as clean as it used to be or why you need to rest more that can be the most hurtful.

Has this lack of understanding from family and friends been a problem for you? How is it that you would like to respond to such comments even though it can be hard to provide a response because of their lack of understanding and because these things touch an emotional nerve?

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Replies (18 replies)

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  • April20
    April20 February 20, 2013 at 4:46 pm   

    Lana
    This especially applies to me today. I have done very little today except sleep and eat. The old messages that my dad used to give me, was that I was lazy or lack of self disciplane. Even though my Dad has died and I do feel that he watches out for me, that I am having real difficulty in evicting these old messages. My dad before he died did understand me more as well as I understanding him. However I am really having difficulty today as I said evicting these old message. All I can do is to take my feelings of guilt with a grain of salt due to my being physicall ill plus my Fibermyalgia. I have extreem limited contact with my sister so at least her continual message of lazy, etc, ect are no longer effected me.

  • LSpradlin
    LSpradlin February 18, 2013 at 8:14 pm   

    That's one of the things that used to bother me the most. I don't go on the guilt trip any more though!

    For my husband, I tell him straight away that if he doesn't like the way I keep the house that he is more than capable of doing it himself. I'm certain that he could do a much better job than me! (haha)

    As for my kids, I love this! "You're right, I have been slacking. Let's do a chore list and give you a little more to do. Yeah, that will sure help me!"

    I know handling friends and family is the most difficult, but only because you care more for these people than any others. The fact is that some of these people simply aren't going to "get it" no matter what you do or say. And that's okay. YOU know what YOU need better than they do anyway!

    I also know that sarcasm does have a place in this world, and here is where I choose to use it! It shocks them and it makes me giggle when I see their faces. For my own little clan (of 7), it works! :)

  • April20
    April20 February 20, 2013 at 4:51 pm   

    LSpradin
    Thanks for some humor. I really need this today. I have an P.H.D in guilt even before I got the symptoms and now I guess I am going for an M.D in this as well. I wish I was like you and not do the guilt trip thing. I guess due to a very dysfunctional family who no one ever felt guilt for the bad things that they did to others. I felt that I had to carry the guilt. Do you have any tips how I can get out of this vicious cycle?
    Thanks

  • LSpradlin
    LSpradlin February 21, 2013 at 1:01 pm   

    Yes, I do. I was raised by my four older brothers. You would probably be very surprised at the kinds of things they did to me, the only girl and the youngest of five; things they thought were funny. They weren't funny and some of the things they did were even life threatening. My young years were terrifying to say the least!

    But that's who I WAS, and not who I am. I haven't forgotten who I was and I don't ever want to because it is part of who I've become. As hard as it is to do, learn from what your own experiences were. There's no need to ne afraid anymore, sit back and look at what you have become. Do you have a husband? (It doesn't matter if you FEEL like killing him most of the time) How about children? ( I have checked in my area several times over the years, and what Bill Cosby says is NOT true! He says "I brought you into this world, and I can take you out of it." The police, at least around here don't think that's funny and have promised to put me in jail if I follow through with it.) Are you a pet parent? (I have three pit bull mixes and two cats. I have always had animals and I cannot imagine a life without one or five.) An employee or an entrepreneur? (Okay, so struggling to earn a living is a pain in the a$$ no matter how you look at it. But man oh man those paychecks are cool to get!) Search yourself for your own accomplishments and you will likely surprise yourself!! Get out a piece of paper and put a heading along the top that reads: "I am a Good Person, and this is why." As you think of reasons, write them down. Once you've filled an entire page, frame it and hang it where you will see it every day!!!!

    There have been many times where I could easily have just dipped out and never looked back!! I stayed, somehow. I raised five children, kept the house clean, did all the cooking, laundry and I worked a full time job! I have rescued animals and re-homed them on the side for fun. I was a dog groomer for nearly 40 years and a trainer for the last 16. To assist with all the stress I felt, I began watching or listening to at least 15 minutes of comedy every day. I don't care if the TV, the PC or You Tube, find something that makes you LAUGH!!

    After a while I began to see something brand new! I found myself seeing the funny side of all the BS I had to deal with in my life every day. For instance; I cam e home from work one day and my older children had been home for 1 1/2 hours before I got there. My kids were awesome! they didn't do the dishes, take out the trash, complete their homework, clean their rooms, dust a single piece of furniture or pick up even one single thing in an hour and a half. Hmmmm. this calls for action!

    "I'm not cooking, doing laundry, dishes or anything else in this house. I'm on strike. If you two can't do it, it won't get done. " They looked at me as though I had turned purple, right in front of them. I went to bed. This was one of the hardest things I have ever done! I knew I had to stick to my guns or they would NEVER help with anything, ever.

    Before I started I made sure there was bread, peanut butter and jelly, spaghetti O's, and canned soup in the house. For two weeks I did NOTHING at all in the house. I had to go to work every day so I washed a load of my own clothes occasionally. I stopped on my way home and got a burger or something that I knew I could finish before I got home. Boy did I feel guilty!!! My daughter, being a smart-ass as usual, decide to make herself some Kool-Aid so she would have something to drink. Proud of herself, she opened the cabinet to get a glass and there wasn't a clean one left. The trash took over the kitchen floor. Dirty clothes backed up into the hall upstairs. Every dish in the house as well as every glass was dirty. I came home every day after work and went to bed. I had a TV, and I watched comedy. I laughed in spite of the fact that the filthy house was going to kill me before the kids would do anything.

    Then, one day a miracle happened. I came home from work and the house was clean; floors vacuumed, tiles swept, all the dishes were clean, the trash removed, their laundry was done, their rooms were clean everything was done. On the inside I honestly thought I was going to have a heart attack right there on the spot!!! But I kept that on the inside; on the outside I simply said "so, you've come to your senses." I went out and got a decent dinner for us to enjoy together. We had a family meeting while we ate. Again, my kids amazed me. We made and agreed to a chore list. The list was posted on the refrigerator. WE were HAPPY.

    Adding a humorous twist to your life will become easier as you watch whatever makes you laugh. Become your own comedian. Sprinkle your humor around your friends and family. You will be a happier person, your friends and family will be happier with you

  • April20
    April20 February 21, 2013 at 2:25 pm   

    LSpradlin, thanks for the tips. I especially like your idea of a list with the heading why I am a good person. I also find humor helpful. It really helps my physical pain. Thanks again

  • LSpradlin
    LSpradlin February 21, 2013 at 3:36 pm   

    Any time I can help just give me a shout!! I still have my own bad days but most times a good dose of laughter makes it a little better. ((HUGS))

  • April20
    April20 February 22, 2013 at 1:30 pm   

    Thanks LSpradlin and I will certianly give you a shout!@
    Thaks again

  • lynnrh
    lynnrh April 4, 2011 at 12:32 pm   

    Sadly there are the ones that will not come thru for us as we suffer with this illness because they are not willing to research it only believe that we are not really in that much pain. These are the people who are the most stressful in our lives never believing in what's in front of their own eyes. They can not see because truly they are 'blind'. Usually they are the ones who can only see what is hurting them never anyone else I have found.
    We who suffer with this illness are in a way the lost of this world because half of the doctors believe while the rest just see someone who is lazy.

  • April20
    April20 February 20, 2013 at 4:58 pm   

    Lynnrh, you are so right.
    I have a sister who is unwilling to understand. She She does not have that power over me any more. She has many issues of her own, she refuses to get help for. Once I have control the enviroment that I see her in and can physically leave. She is now doing what she did as a child(following my lead, having my opinion) This has always unsettled me due to me being her little sister. I see and talk to her very rarely due to all of her addictions and her bullying and her wierdness that I feel bad for her that others see that my parents could not!!
    Your talking about doctors I can also relate. My neurologist though I was lazy, another one suggested I needed to see a psychiatrist.

  • Dizzy65101 or Robin
    Dizzy65101 or Robin March 11, 2011 at 2:55 pm   

    wow I think this is the ultimate question with Fibro why is it so hard for them to understand? I think alot of it is the medical profession didnt and still doesnt validate our condition so there is a lack of beleif lets face it the medical establishment has a lot of influence on the way the consumer sees things.

  • April20
    April20 February 20, 2013 at 5:02 pm   

    Hi Robin
    I had a opposite reaction in a way from one Rhumetologist. When I returned to him to find out the results. I had six different things seriously wrong with me and fibrermyalgia. He told me all my test results and thought I would be "thrilled" and then told me to "have a great day" How is that for sensitivity!!

  • Kassidy81
    Kassidy81 February 26, 2011 at 5:14 am   

    I have to deal with this on a daily basis' and it is hurtful when it comes from my fiance but even worse when it comes from my children. I have gotten to the point that i have cried so much i dont think i could shed another tear. and all i can do is rest when i can my fiance is finally doing some research with me so he understands it better just that he got spoiled from what i use to do and miss doing as well that is the part i have to explain to everyone around me…

  • April20
    April20 February 20, 2013 at 5:08 pm   

    Hi Kassidy81
    I am so sorry that your fiance can not understand. Even with researching he still may not understand. Men want to fix and he can not fix this condition. You may want to let him know what heklps that he can help and what he does that is not helpful.
    As for your children it is important to let them know that you will do something only if you can. I learned this the hard way, with my son. He now understands somewhat(he is going on eleven. Also you may want to research when you are up to it, how to explaing your condition to your children. I did for another health condition and that helped with understanding.
    I hope this helps and hang in there!!

  • PandorasPandemonium
    PandorasPandemonium February 26, 2011 at 9:39 am   

    Kassidy, I so understand what you are saying. You are on the right path by doing some research TOGETHER. Knowledge gives us the ability to understand.

    Maybe you could have a family meeting and read the information together. Allow a few days for the information to be absorbed, and have another meeting where everyone can ask questions.

    Also, maybe when you are asked or expected to do something that is beyond your ability at the time, you could specifically explain why you can not do it. I would love to do "whatever" but the Fibromyalgia is making it impossible, because, I am (tired or whatever) or my (arm or whatever) is (causing me too much pain, or whatever).

    This may sound underhanded, but if you take the blame off of yourself, and attribute it to the Fibromyalgia, people will eventually understand that it is not YOU who is saying "no" it is the Fibromyaliga that is preventing you from fulfilling the request.

    Everyone WILL get tired of hearing about the Fibromyalgia, but, unfortunatly it is here to stay, and they must accept this fact.

    Understanding for everyone will be a slow process, with both backward and forward progress. It is a learning process for all. Be as patient with them, as you wish them to be with you.

    I am no longer able to do things in the same way as I use to, however, if I can't do it one way, I will try another. It may not be in as big of a way and it used to be, but once I accepted this fact and realized that I am still able to do it in some capicity, I felt a lot better about myself, and my life. I realized that even though I may have limitations, I still have options.

    I hope that this helps you, Kassidy. Let me know how I can help.

    Your Friend, Pandora

  • PandorasPandemonium
    PandorasPandemonium February 19, 2011 at 12:49 pm   
    Edited February 19, 2011 at 1:26 pm by PandorasPandemonium

    This is definatly one of the most emotionally painfully issues for me.

    The people who are the closest to us, and whom we love the most, generally have the power to cut us the deepest in any area of our lives.

    I'm afraid that I have more questions than answers.

    I would really like to know the answer to MY question. "WHY"?

    I realize that you, who do not have Fibromyalgia, can never understand what it feels like to have it, (EVERY DAY OF YOUR LIFE) but "WHY" would you say…

    You never (fill in the blank) anymore?
    You don't (fill in the blank) anymore.
    You use to (fill in the blank)
    Why can't you (fill in the blank)
    Why don't you (fill in the blank)
    You can't be that (fill in the blank) THIS IS MY PERSONAL FAVORITE
    I need you to (fill in the blank)
    You have to (fill in the blank)
    It's your turn to (fill in the blank)
    etc…etc…etc…etc

    And then there is the…

    I am sick and tired or YOU beiing:

    Sick - Tired - Depressed (fill in the blank) (fill in the blank) (fill in the blank) etc…etc…etc…

    ARE YOU SERIOUS???????????????????????????????????????????????????????????

    I AM sick and tired, and you are blaming me, AND using THAT comment???????????

    Honestly, I actually have no come back for any hurtful comments. Each and every time one is made, I am hurt and stunned beyond belief, that I am speechless. It actually feels like a knife is plunged into my heart.

    I told my fiancee about my condition, during our second date. I provided him with a twenty page document, which included pictures, that thoroughly explained the condition. I told him that if he had a problem with it, to get up and walk away on the spot. Harsh, I know, but in my world, necessary. Take me as I am, or you don't deserve me. Anything less, IS a deal breaker. We have been together for five years now. It hasn't been easy, or perfect, but it is getting closer.

  • April20
    April20 February 20, 2013 at 5:14 pm   

    Hi Pandora
    You are so right. I too told my guy friend and I let him know and he did research on his own and has been there for me for five years. Yes at times he is insensitive due to no being able to fix. As long as I call him on it right after he has saed something hurtful, he does get it and he makes amends in a action whuich for me, means more to me that just appologizing as they say "actions speak louder than words"
    He as well appreciates me telling him right away due to his fear(like all man) of "we need to talk" LOL. We also do not gett so weird with each other.

  • Lana
    LanaPA February 23, 2011 at 1:37 pm   

    It takes a good person to understand. I wish you to much happiness and good health.

  • PandorasPandemonium
    PandorasPandemonium February 23, 2011 at 2:40 pm   

    Thank you Lana.