Family vent...suddenly all my family and friends have fibro????

Discussion in 'Fibromyalgia Main Forum' started by Jaden, Mar 16, 2003.

  1. Jaden

    Jaden New Member

    I felt so good to finally be told that this is not all in my head!!
    The pain, the fatigue, the depression etc. Not that I like having fibro but for so many years I felt like I was going crazy, like something must be wrong with me, and no body knew it!!

    Well I shared with my sister, and my MIL what the Dr said. I was sent to a rumey and was told that I had FM/CFS and had most likely had it for years!
    When I told my sister she suddenly tells me she has it too. That I had better not start whinning that I can't do this or that, as she can and does even after having cancer 2x's. This didn't surprise me too much as everything has to be about my sister and her cancer.(long story) She has never been and never will be a good support for me.

    But then my MIL tells me that both she and my SIL have it. Making it sound like I am a wimp for "acting" so tired all the time or being in so much pain.

    Even my dh doesn't get it. I have given him stuff to read and he hasn't read a thing. Instead I get the odd comment when I ask him to carry the laundry up the stairs for me like, Oh Ya, you can't "do" it.

    How do I make my family understand?? I have never heard any of them mention that they have it until now.

    All of this is making my depression worse! I feel like crying most of the time, as I feel like I have to hide my pain from everyone around me. The only one who seems to understand is my 15 yr old son!!

    How do I cope with this DD when no one believes me??

    Joanne
  2. Shaylee

    Shaylee New Member

    I was reading a medical journal yesterday and it stated that "People with CFS/FM have more of a dysfunctional life than people with diabetes and lung disease."

    Tell your husband I said, "No you cannot carry those clothes." I hurt so badly sometimes I cannot bend over and get mine out of the dryer. So he really is lucky all he has to do is carry them. I had to carry my trash off the other day and was in bed the whole day after that, as my husband is a truck driver and is not home to help me.

    As far as support from your family, look for support here and find you a support group close to you. I do both of these things and they are quite helpful.

    You may pass along from me to your family, this is an awful
    debilitating disease. It has nothing but pain and fatigue to offer and one is usually in it everyday. My feet feel like knives are in the bottom of them and to go from my bed to the toilet is a feat in itself on some mornings. The stiffness is also horrible, and the back shoulder and neck pain.

    I went from working 65 hours a week, to 30, to 18, to nothing over a period of two years.

    So you can whine here all you want and all of us are going to understand.

    May God Bless you,

    Shaylee

  3. nct

    nct New Member

    so ok, maybe your family does have FM. You certainly don't want to do what they did, and belittle their feelings the way they did yours.
    But of course, there are different levels to everything including illness.
    I have CFS. But I'm not nearly in the states some of the folks here are. I still work full-time. I still have a social life and a sex-life.
    But I certainly have noticed a drop in my energy levels across the board. A couple hours out with the bf and his daughter, or at the conservatory, and I'm whipped. Totally drained. That never used to happen.
    And lately, I've been making a point to be in bed by 10:00 at the latest. Trying to get some extra sleep, etc.

    So things run differently with different people. Just b/c they can do all their usual stuff doesn't mean you automatically should be able to as well.

    Hang in there!!

    Nancy
  4. pamela

    pamela New Member

    You tell your MIL, SIL, and DH that carrying the laundry is like lifting a 10 ton load of bricks. That my husband is painter/contractor full-time...he does every day the laundry that includes washing and folding it and putting it up, takes out the trash and burns it, does the dishes mows the yard and pulls weeds, is building a rock pond not to mention hauls in by hand probably over 500 large rocks and has built a rock patio surrounding our house (and still hauling in rocks by hand). He does all the maintenance in and around the house...vacuums the house, repairs everything in the house. Even does windows!!! I could go on and on.... your family needs to get a clue as to what this disease is all about. I do what I can ..I work 40 hrs a week and drive 2 hours a day back and forth..[one each way]. IF they cant carry one simple little load of laundry up the stairs or where ever they really have a lazy problem. If they dont want to even listen and read your hand outs that you give them ...then you need to do what you can and leave the rest for them. Maybe you can take your husband to the doctor with you. I dont know it sounds like your family has no understanding at all or even wants to understand. My first husband and his miserable family was non caring to the max. If I had been this sick being married to him it would have been murder!!! This you described reminds me of them. Do what you can and see if you can get one or all of them to go to the doc. with you. If you get one to go with you maybe they might be persuaded to understand your situation and help the other two members. Im so sorry your having to go through with this. It seems people could be a bit more compassionate and understanding when it comes to illness. Hope you get some relief...Pammy
  5. pearls

    pearls New Member

    Do those family members suddenly have it - or suddenly say they have it? As a teacher, I've met several parents these days who want special consideration for their rotten children because their children have ADD, or ADHD or whatever - only to find the children have NEVER BEEN DIAGNOSED BY A PHYSICIAN!! Could this be for your family a new, fashionable disease? And in your sister's case, a new way to out-disease you? If only they knew how much harm they do!

    -Doubting Pearl
  6. teawah

    teawah New Member

    You can lead a horse to water but you can't make it drink. People are all going to think differently and you can't change that. Let them think what they wish. It's their perogative. We can't control anybody but ourselves. Take care of you. Only you know how much pain you suffer as only they know what they are going through. Maybe they do have it? But that doesn't mean that they are going through what you are. Viva La Difference! Don't bother getting yourself stressed out by what other people think, do or say. They only have the power to control you if you let them.
    Keep on Keepin' on.
    teawah
  7. COOKIEMONSTER

    COOKIEMONSTER New Member

    In my household just last night. You see, I to have been trying to educate my family by ordering on-line brochures etc., but someone recommended the video, "I Remember Me" by Kim A Snyder. This video tells a story about how she, doctors and others are coping with this illness even today.

    Soon after the movie was over, we all sat down and discussed it. My first reaction was to let them know that this was my way of sharing with them some of the things that I am going through right now and provide some insight. However, during the movie, my husband was reading a book, my daughter was receiving calls from her cell, and my other daughter was playing casino on-line. That really hurt me and I brought it to their attention which eventually blew up in my face.

    I know that they are not willing to accept that I am ill...they keep telling me that they don't believe me. My husband went to the point of saying that I am a "faker" for that matter, which tore me apart. I'm just not sure how I can make them understand that I have bad days, which are really bad, but then I have good days where everything seems normal.

    Just to give you an idea of what I've been going through lately...I've really tried to put "mind over matter." Really I have tried. I have the chores in my home done, dinner on the stove when they come home, laundry is always done etc., but I really push myself to do these things only to pay with the agony of pain. So in reality, they don't believe that I am really suffering.

    Just yesterday, I longed to sleep in and my husband turns on the t.v. at 5:30 in the morning. I asked him kindly to please turn off the set so I could get a little more sleep. He did not budge. So again, I kindly asked him to go into the living room to watch t.v. and he did not budge. So I think that all my feelings suddenly came to a boiling end and I got out of bed, said some nasty things to him and left the room. When I get angry I take all my frustrations out on cleaning. I prayed to God, please take this pain away from me and I heard this voice say, "Come to me all those that are weary and tired." Yes, it was quite freaky mind you. So there you have me cleaning the house and doing laundry at 5:30 in the morning! When I realized what I was doing, it was too late, the damage had already been done. I went into the bedroom only to find my husband asleep. That really ticked me off.

    Then my daughters woke up and wanted to go have breakfast. I agreed because I really needed some time out. So we had breakfast as a family but soon I found myself at the mall. Why can't they understand that I can no longer go out for long walks anymore. All I did was sit there for over 2 1/2 hours. I feel uncomfortable and can't be in crowds anymore, I just want to be home away from it all. Maybe I'm pushing my family away from me. I just can't comprehend why this is happening to me.

    I have no patience when it comes to small things such as who does the dishes etc. I rather do them myself so I don't have to hear the girls fighting about, "it's your turn." "No it's your turn." Mind you, my daughters are 25 and 23 so it's not like they don't understand the concept.

    So anyway, we finally get home from the mall and now my family's hungry. So I informed them that it was smorsgabard night which means, we are eating all the left overs. I had no complaints from anyone. That's when I decided to share the video with them. I mean, I heard some many negative comments last night that I really did not wish to live through another day. I talked to my family and my husband kept telling me that I was manipulating my children by "talking" to them and not "shouting" to them for attention. It's either your damned if you do, or your damned if you don't.

    I'm not sure what to do at this time. But I really and truley think that my family needs some serious counseling. Even when I was working full-time, I still attended to their needs when I got off work. So they have always been "spoiled" for sake of words and now that I need them more, it as though they have closed all doors to the reality of what's happing to me. Could it be denial? I know it is. But I think that they are using the wrong approach. In their eyes, they are trying to make me think that it is all in my head which is frustrating, because believe me if it were all in my head, I'd be that same person I was just 6 months ago pain free.

    So anyway, for those that still have functional families, I highly recommend this video. It really does give you a feeling of "I Remember Me."

    I could go on and on but....Thanks for listening and allowing me to vent with you all.

    God Bless Us All.
  8. bejo

    bejo New Member

    You are welcome to come here and vent anytime.We all understand.My family doesn't give me support either,except a 10 year old grandaughter who tries to understand.The wonderful people here are my support group.But yes,there are different levels of this DD.I dan't have it nearly as bad as a lot of the people here do.So if some in your family "really" have FM,then they are some of the lucky ones who don't have it real bad.So when you want to vent,cry,or just want to talk about how you feel,come here.Sending you ((((((hugs)))))). bejo
  9. COOKIEMONSTER

    COOKIEMONSTER New Member

    Thanks a lot Bejo for responding to my message. It sure does feel good to know that I am not alone, and when I feel that I need that special attention, I can always log onto this message board for support.

    Love you all!
  10. marcia41

    marcia41 Guest

    Hi Jaden,Just thought while reading your post,why not ask all these family members who suddenly have your DD,what kind if Dr. do they see?What kind of treatment are they on?Boy,there are hundreds of people on the message board who would love to know how you manage to be doing so well!Tell them,so many if not most of the people here have had to quit their jobs and go on SSDI and how luckey they are to feel so good with their symptoms! Also,ask whaT THEIR SYMPTIOMS ARE?
    If they are at all interested,suggest they come to this board and tell everybody how great they are doing<and what their tx> is etc;
    Be great to just ignore them if possible,.Mention maybe<that Montel Williams has M.S.,but some,like Annette Funachello has it too,but is in a w/c and can barely talk.
    Explain that"s like this disease,some do much better than others!That you wish you were like them!
    Well>hugs to you and you know we care and all of us know what you"re going through!
    Your FRIEND ON THE BOARD,Marcia (SORRY comp>.Messed up here)
  11. PatPalmer

    PatPalmer New Member

    I really feel for you guys.

    I wonder if it is because you are STILL DOING all the things YOU and THEY expect of you, that they can`t see how you suffer. It`s selfish when people say they have it too.
    You`d have known about it.
    It`s sheer ignorance and they simply don`t understand what it`s like. Only a fellow sufferer can understand and will offer support.

    If my husband had woken me up and then fell asleep - i`d have made damn sure the TV woke him up too... AND it would have gone straight out the window...

    PUT YOURSELF FIRST AND TAKE NO SHIT FROM ANYONE. You don`t have to get mad, just be firm.....

    Respect yourself and if at all possible, be positive in saying. "No, I am unable to do that, why can`t you?" Then they just might listen.
    The stress of not understanding and the constant battle of trying to educate them only makes you worse, so try to harden up and set your own demands on them instead.

    I`d be very tempted if I had the cash to just dissapear and book myself into a hotel for a week,(oh, what luxury) or perhaps stay with supportive friends/family, and only leave behind the video & literature behind. - Bet it`d get read then.....

    I`m just venting off my anger for you guys, I know it`s hard to be strong when you haven`t even the strength to stand at times, things are always easier said than done, just wish I was able to come visit and do it for you.

    Sending you my love,hugs,and support

    Pat.