I Cried thru all 29 posts of my family don't understand

Discussion in 'Fibromyalgia Main Forum' started by Blond, Aug 28, 2003.

  1. Blond

    Blond New Member


    Hello to all of you.I know EXACTLY how every-1 feels.I was dx'ed with Lupus in March and Fibro an CFS in May.I was so worried about the Lupus,I jus didn't think about the fibro/cfs.......But I assume the constant pain I feel in my legs,back,head and my neck I guess are the fibro.....or maybe it's both.I don't know,it seems all to overwhelming to deal with.It seems the right side of my body hurts worse than the left including my arms and here latley I have been getting pain in my hips.I lose my train of thought forget what i am going to say or I can't spell,I have missed doctor's appointments or have gone days early only to be smiled at sweetly an told "wrong day Tricia".....I'm feelin like a dumb Blond these days.My family who I thought I was important too is like every-1 else's they do not understand.I have been complaning for yrs thou,even my husband didn't believe me till he was told by my doctor's.....then ofcoarse he felt bad.He still does not realize how hard I push myself daily jus to go to the store,an pick up a lil in the house.I could not do a thing if it were not for my pain pills....I was jus lazy to every-1,lil do/did they know how bad i felt/feel.I alternate weeks with my daughter to take care of my 94 yrs old grandmother.She can no longer stay alone an I don't want to see her in a nursing home,while with my grandma I keep my 14 month old grand-daughter who is my life,I have prayed everyday to God to please let me live long enough to see her grown,then take me.In my heart I don't think this will happen that is one reason I keep her with me,I love her more than life.She does not understand I can't hardly move in the morning,I hurt from the top of my head to the soles of my feet,I'm ok after i struggle to get to the kitchen carring her an she is a tubby,lol an take my meds about a half hour later.....all is ok till my med's wear off then i get irritable then i get snappy,I hold back takin them either because i know i will be up all night or I am jus afraid of the methadone they now have me on.It seems now that I need my family the most they are not there,My daughter hit me 2 weeks after i found out I had Lupus,I forgave her but she has continued to hurt and cause me much grief an pain,My brother his g/f an I are also on bad terms.....And in my heart I don't even understand how it happened,but 1 bad word has lead to another an now we are not speaking.My Husband loves me dearly an after 9 yrs an all that we have been thru I do Love him,but he is another who does not understand he gets mad at me cuz i run the AC in the truck or in our room,or I don't have dinner done or his clothes aren't done ....then we fight,I jus wanna scream I wish U felt what i do for 1 week......I am stronger than any of them know or realize,But after all the fussin an arguing and to top it off the way I feel all the time,I have asked for no more tests,no med's to treat my diseases and anything else they find wrong with me.Jus treat my pain an leave the rest to God.I have never felt so helpless and alone in my entire life,an I already had a life most best sellers or Movies are made from......I'm tired now,I'm tired of hearing myself complain.....heck I know they are.Sad part is I don't tell them everything.....it's jus toooo much,I hurt now is all I can say an from what I understand it will only get worse.I think what hurts me the most is I am the one that is called on to take care of a family member who is sick,hurt or jus needs taking care of.I took care of my father who died of lung cancer,i was with him till he took his last breath,I also took care of an ex boyfriend's grandfather who was diabetic an had alzheimer's,I was also with him to the end.My father in law was in a accident an lost his leg,I was 7 1/2 months pregnant at the time w/toxemia,I took care of him,his household and my own children.....A month after he lost his leg,My own mother was in a terrible car accident an almost lost her life.....with all of that goin on I still went to atlanta from florida to do what i could for her,if I wasnt there,I was on the phone with her doctor's.A couple of yrs ago she was in another wreck,her car ran her over,I went an stayed with her for a few months till she could walk on her own and drive......I also took care of my grand-ma when she broke her hip,she got alright but now my daughter an I are having to go back an forth to help her....Now when I need them, No-one is here for me or they are all mad at me......How can this be,I don't understand ,I didn't think bout it,I jus did it,they needed me,they were my family and I loved them......why aren't they like this.I'm sooo sry this is so long,but reading these post really hit home to me becuz of what is goin on in my life right now with my daughter,mother and my Brother....It Hurts an I guess i needed to vent,I jus didn't mean to write a mini-series,lol......Again I know how all of you feel and it does make me feel alittle bedda knowing there are others who feel jus like i do an that regaurdless off what some may think....I'm not Crazy!!!!!.....((((((Many Hugs to all of my fellow pain partners)))))Blond

    [This Message was Edited on 08/28/2003]
  2. kerrymygirl

    kerrymygirl New Member

    I read every post and could feel the NEEDLESS added pain we are given from the very place we thought we would get support.

    We can only try to put it into words.

    For those who are still married, mine left to take up with someone else while I was almost on my death bed. Doc`s were not sure if I would make it. I stood by him during some very diff. times and a sccident he had. So this type of thing sticks with you. I know in my mind that it was his weakness to deal with anything emotional. I left myself get that bad knowing for a week I prob. had meningitis. Deep down I knew he could not handle. I was always so strong. It ended up being lyme,now fm,ebv,cfids,etc., actually my whole immune system is disautonomic. The stress of his 8 yrs. of stlaking certainly made everything so much worse.

    The point I am trying to make that without any support how the H**l can we get better or keep it up alone.

    This to me besides all the too many symptoms makes it sooo hard, sometimes harder than this dd itself.

    It is a known fact that when anything traumatic happens in ones life without support it makes it all just more devastating. I heard it over and over at clinic, when I would do their work up. Then they would start to vent the lonliness and rejection from loved ones and society is almost the thing that put everything over the top.

    I could feel all your pain and people need touch and caring to survive. Not more lonliness. I live alone and I am not sure if it is worse to be living with someone who is exhausting to you do to their added pressure and non support.

    Too all of you&Blond,you are not alone, I send you huggssss

    Do your best to remind yourself it is not your fault and you are strong and good, sounds like very caring.BTW I lived in Atlanta now in fl. I also ran back and forth to OH., ill taking care of family and A dear elderly lady here. I still got jumped on for not being there enough. I had to take a short break, so they would not have to take care me when I started to go down fast. That is what I said on other post I try to understand their side it sure would be nice in return sometimes.

    Sorry I rambled told you it is my pet peeve having med background, I just hate to see all this needless hurt.....
  3. libra55

    libra55 New Member

    I am touched by your letter. And I congratulate you for keeping it all together as well as you have. Please try not to fret over the missed doctor's appointments and other things of that nature; the most important thing is to look at the big picture and see that you are really doing a great job at keeping your life going when you feel so lousy. Give yourself a pat on the back for that,ok?

    I do not have lupus but I have had FMS since my thirties (just diagnosed at 45 and now I am nearly 48). My husband is not very supportive of me. He still lives with us, but he has "left" mentally as he tries to be home as little as possible. One of my daughters is mildly autistic and we think also schizophrenic (diagnosis under consideration right now for the schizo). Although she is under medication and is much better, the last ten years have been hell as she is a very difficult kid to live with. My husband will not believe that she has a mental illness, just as he does not believe in fibromyalgia. He calls us "lazy a**holes". I also have a normal daughter who has to deal with all of this and she is only 13, god bless her.

    Like yourself I went through the heartbreak of caring for a parent with senile dementia. My mother had Korsakoff's psychosis, a form of dementia caused from excessive drinking. Korsakoff's is similar to Alzheimer's in many ways. They become very paranoid. My mother accused me of stealing her checkbook, her bank account, her car, her keys. She would call her lawyer and start lawsuits against me, then forget all about them. Police came to my house constantly with her complaints against me. It took a long while for people outside our family to realize how screwed up she was and that it was her imagining these things. As her illness progressed she became a hermit in her home and would not take care of herself. I eventually had the unpleasant job of physically removing her from the home she had lived in for over 35 years. It broke my heart.

    It is tough enough for a normal person to deal with these type of events, but for someone with fibromyalgia like us it is overwhelming. I don't remember if you mentioned extended family at all but in my case I have NONE. I am an only child and I am now in the position where all of the elderly relative are beginning to go downhill and I am expected to be at their beck and call. I have one cousin about an hour and a half away from me and he does s**t to help out.

    My husband is a police officer; he is gone almost all the time, either working or like I said has mentally left the building. Just doesn't want to know about fibro or anything else, even after the rheumy talked to him about my condition and that I was not faking anything just to get out of doing things. I think a few others on this board have had this and some have had their spouses just walk out on them. He is of the old school that the woman should do all the housework; he just dumps his dirty dishes and his underwear all over the place and I am expected to pick it up and deal with it. I try very hard not to p**s him off because he has a temper and when it blows it puts me in a flare that lasts for what seems forever.

    Well not to ramble any more. I do understand your situation and there are so many here who can also relate. Know that you are never, ever alone; there are so many kind people here who will pick you up and support you emotionally.

    Sending you a gentle hug,
    Michelle
  4. Pindooca

    Pindooca New Member

    You are definately not alone. Every day I fight the battle w/my husband. He truly believes it's in my head, despite what he says.

    So, after 3 known infidelities, a child with autism, sick family members... Jerry Springer material for sure... we are still standing--most of the time :)
  5. babyjoan

    babyjoan New Member

    I am so sorry you feel so alone. I think we can all relate because even if the people around me love me I, can see there faces if I gasp all of a sudden, or God forbid complain more then once. I know how you feel. Their feelings show on their face and I too get sick of hearing myself complain. People say, "it can't be that bad if your working full time." They have no idea how many times I put my head on the desk and sob. I do that behind closed doors. When I get home I take my meds. By this time I am in agony. I just do what I have to do. Please continue to come to the board to talk. Please don't feel that no one cares. We all do and we all know your pain. You are in my thoughts and prayers.
    ((((((((((hug)))))))))))'s to you. Hang tough. LOL Joan
  6. tandy

    tandy New Member

    just wanted to respond somehow and extend a Welcome! You have so much going on in your life and you're handling it!! So for that alone....give yourself credit!! Husbands don't usually "get it" unless your one of the lucky ones.
    Mine has no clue the amount of pain I'm in at times. I don't even like to say whats hurting each day because it changes so much all the time and I know he's sick of hearing about it! I'm 40 and have been ill 11 yrs with Fibro and possibly now Lupus or some Mixed connective tissue disease.I also have Endometriosis and have had many surgerys to remove growths on my ovarys and pelvic area.
    My man at one time said it "was just aging!" Well if this is aging,my body is way ahead of my mind in aging!!
    I know how tough this DD is and just wanted you to know that we all can relate here!!so please visit us whenever you feel the urge or need. Take care :)
  7. SPR30

    SPR30 New Member

    I get alot of crap from people outside my home. Thank God my husband and son (age 9 my little man) are helpful and supportive and appreciative of how hard I work to balance finances, clean, shop, cook and do laundry, etc...I never stop going, cause when I do slow down it is very hard to get moving again. Some days it takes 2-3 hours to get a good start in the first place (lol).
    I am 31, so people think young means healthy, that really hurts.(I feel cheated, cause I should get to enjoy life before I get decrepit). And I do get called upon to care for others and I am reliable (do unto others...).
    Thanks for sharing and above all, caring.
    (I have had a total hyst, been dx with FMS,MPS,OA&RA,Anemia,PMR,PLMD,the list goes on.)