They Just don't get it!

Discussion in 'Fibromyalgia Main Forum' started by ChungieDolor, Dec 28, 2005.

  1. ChungieDolor

    ChungieDolor New Member

    Hello everyone.

    I am at my wits end. I have had this dd since 98. Dad passed away in August, and my mothers neurologist believes she has vascular dementia.

    I have 2 older sisters who are able to work. I have been on disability since September 2001.

    My sisters took fmla when my father was sick, and I tried to help out as much as possible. By the way, I have fms, cfs, ibs, ibls, hypothyrodism, inflammation of the arteries, sleep apnea, insomnia, asthma, and the list goes on. I know there are probably people out there that have it worse.

    I have been sick with bronchitis since the second week of Dec. I notice that it takes longer to get rid of these types of illnesses. Fotgot to get the flu shot. My hubby has been sick as well. My eldest sister had company in town for these last few weeks, and was unable to help. I stayed with my mom for a weekend and called her each day when I was unable to go over.

    My middle Sister, we will call her D, has stayed with my mom most of the time. Has taken her to doctors appts, and to get groceries etc.. And she was sick with the flu as well, but seems to be getting better. Wouldn't we all like to be in the same boat. Get better! As if we had a cold.

    I am beside myself since I can not help my mom as much as my sisters can. I feel very badly and depressed about this.

    A month after my father passed away, I had a meltdown, then I got this stupid case of bronchitis. There are times when I am unable to get out of bed. Sound familiar?

    Mom saids not to worry and to take care of myself. How can I not worry. D is ready to have a meltdown. I had been seeing a bereavement counselor, and suggested she see her too! A counselor told her to get help from her sisters.

    I asked her if she told the counselor that one of her sisters has this dd. She did not say anything. She has also been throwing me some curt comments! Very hurtful!

    I was suppose to go today to cover for D, and was not able to get out of bed. D said in a cheery voice, that is ok, and hung up. I tried to call her on her cell phone, and left a message since she did not pick up.

    I have sent the non-believers letter to both sisters a few months ago. Did not do very good! Needless to say, I am beside myself!!

    Can any one relate to this situation? My middle sister has a friend who has fms, and is working, but she does not have other ailments in the mix. I told D that you can not compare me to your friend since everyone is different. This does not seem to help.

    My husband told me today its you and me Babe. This saddens me very much. I hate this dd, if I had a missing limb would this make a difference. I know Wo me, but throw me a bone for crying out loud! I did not ask for this dd. And I have tried almost everything. Maybe, I am complaining too much!

    Sorry for the novel, and the pity me story. I just get sick of being sick! and can not rely on my own family for support! I thought I could at least with D.

    Positive comments would really help me out right now. I thought I had hit the acceptance stage but I can not help but get very angry with this invisible disease. Thank you for listening.


    [This Message was Edited on 12/28/2005]
    [This Message was Edited on 12/28/2005]
  2. Remnant

    Remnant New Member

    My family checked out long ago. My husband says the same thing. He says it's just us and we have to make our own family the best way we can. You get really tired of being looked at like you have a third eye, ya know.

    We didn't even bother going for Xmas this year. Enough is enough. You have to make your own family, and forget the people who treat you like crap. Family makes the horrible mistake of assuming that they CAN, and that they have a RIGHT to treat you like crap, simply because you are family.
    I don't know why these people kept procreaitng, being that they all seem to hate one another, but by golly they can't seem to stop passing down the dysfunction.

    Strangers on the street treat me better.
  3. jaltair

    jaltair New Member

    You have gone through so much with the loss of your father and now the illness of your mother. My heart goes out to you. What you are feeling may be more subjective on your part. It's hard to be objective in a situation such as you are in, I'd say that it's downright impossible!

    It sounds like you have done everthing to gain understanding from D. You need to realize that the problem she is having is HER problem, not your's. Don't take on the load of her problem(s). You have enough in your cart!

    I've done the same things as you have, given articles, given written poems that I've done, etc. to try to help my family understand. I think that most of my family are beginning to comprehend. Especially because I look more "symptomatic" (not really sure if that's a real concept? Brain fog). My son, however, continues to believe that FMS/CFS are not real. I don't know if he is in denial or what.

    My heart and prayers go out for you. I hope that this gives you some measure of comfort.

    Warm hugs and thoughts, Jeannette
  4. ChungieDolor

    ChungieDolor New Member

    as tears fall down my cheeks. I have never felt so helpless and alone in my entire life!

    There is a support group near by on the 1st Saturday of each month. Maybe, I will meet some friends who can relate as well as this message board.

    Thank you very much. I really do appreciate your kind words, and reality as we see it! No one is perfect illness or no illness. I will continue to pray for strength, and know that my Dad is with me.

  5. Gly

    Gly New Member

    Just when you think you've reached the acceptance stage, well, stuff happens! And then you get to grieve your new losses all over again from square one.

    My Dad died on November 1. I did manage to see him before he died and I went to the memorial service. That was all the support I could offer.

    At the same time as my Dad was dying, my younger daughter was having a health crisis clear across the other side of the country. I could not travel to help her. I couldn't even grieve for my Dad because I was so afraid I was going to lose my daughter.

    Fortunately I have an extremely supportive family and, most important of all, a dear husband who takes care of a lot of stuff for me. Also, I pray and try to trust the Lord to work everything out. I'm not always good at that but I'm learning.

    I can tell when someone doesn't believe that I am this sick. It's hard. I don't think the 'letter to normals' helps matters. Just my opinion, maybe, but to me it sounds like a demand for attention and sympathy. People will just have to take me at my word that I will do what I can. If they don't, well, it's their prerogative to believe what they want to.

    The way your sister treated you was horrible. Obviously she cannot or will not try to imagine what you are feeling. If you've helped your mother to the best of your ability you have nothing to feel guilty about. Your sister is probably tired and angry. But what can you do? I think you've answered that already.

    As to your sister comparing you to someone who is able to work... the majority of people with this dd are able to work. But 'majority' is not 100%. You are in the minority in this. I'm glad you have your husband's support. And this forum is a great place to vent and sort out your feelings.

    Wish I could think of something more supportive but it's just hard no matter how you look at it.
  6. ChungieDolor

    ChungieDolor New Member

    and I hope your daughter is doing well. I appreciate your support, and words of wisdom Gly. I read some messages before I sent the non-believers letter. I was wrong thinking I would receive some type of support and or compassion, and yes maybe some sympathy from my family. I guess, that was gone when I was able to start walking a couple of years ago.

    Heck, I have how many more years of this dd?

    I know that what is important now, is my Mothers health and how we are going to get some help taking care of her. The neurologist told D that she probably will recommend assisted living, but my mother holds on to her independence and claims that she is alright and can take care of her self. We know that this is not the case. She has lost so much weight, and has lost her will to live since my Dad passed away. They were married 61 years.

    I worry once my sisters go back to work since they are on vacation. Moms house looks like a war zone since she is trying to sell it.

    My sisters wanted Mom to move in with me since I was home all day? How can that be possible. Goes back to the invisible illness.

    D has already had it out with my oldest Sister. So they do not communicate very often. I would hate to see this happen to D and I since we were once close, and are a small family. I suppose it is in Gods hands.


    [This Message was Edited on 12/29/2005]
  7. Valentina

    Valentina New Member

    and I know how devastating it is to not have an understanding, supportive, and caring family...especially when you have this DD. I'm so sorry to hear about your father.

    Please don't feel guilty about your mom - you're doing everything you CAN do to help her and you should be really proud of that. I'm sure your mom knows how much you want to help her and how much you love her.

    Many gentle hugs,


  8. ChungieDolor

    ChungieDolor New Member

    Have helped Mom with bills, cooking, cleaning, washing clothes, doctor appts, taken her to the credit union to deposit her checks. But this was a few months ago. I had some energy at the time. It seems that I am in a never ending flareup. I was with her last weekend and am homebound again.

    I also had a meltdown when my Dad passed away. Did not talk to anyone, and could not get out of bed but to go to the bathroom. I am seeing a bereavement counselor, and call my Mom as much as I can when I am unable to drive to her house. She told me I need to rest and that she will be ok. I cry when she tells me this since I worry so much!

    My sister D helps her with financial matters right now. Mom gets furious when D does this and does not remember when she tells us to write out the checks. She insists on handling the bills, and getting the mail. But she loses it. So we or when I was helping out, would take bours to find the statements within her clutter.

    She would have severe outbursts, and tell us to all go to h, and why don;t we just take over the house. I am afraid to help with bills since she does not remember going to dads bank a few months ago and withdrawing two savings accounts. She cries hysterically about it, and saids she is not a thief. She also said that she would hire an attorney if this money does not appear.

    We do not have the money, but Mom does. and continues to say she is broke. If, I could only win the lottery! There is more history, but, it would only turn into another novel.

    Thanks for the advise.

    By the way, she has talked and talked about seeing an attorney for a will, but has never accomplished this. She has other ailments aside from the dememtia. We are in a bad state of affairs!

    [This Message was Edited on 12/29/2005]
  9. Gly

    Gly New Member

    My daughter is fine now, thank God. Her husband is in the army (Canadian) and was away from home. Since that episode she has learned of some resources to help her if anything similar happens again. She has 2 little girls, almost 4 and 1 1/2.

    I'm glad my Dad isn't suffering anymore. He had prostate cancer. The cancer eventually spread all over his body.

    My mom drove up here (7 hour drive) to arrange for me to be her power of attorney. She is moving here when the weather warms up. I'm so happy that she'll be nearby. She's only 71 and doesn't need our help yet. In fact she's offering to help *me* with drives, etc. when she moves here. As she ages she may need our help so it's good that we'll live nearby. She's not at all opposed to going into a care home as long as she has her own room and is treated well.

    I really feel for you. Your mother sounds a bit like my mother-in-law except for the dementia. That must be a nightmare to live with!

    Journalling is a great idea. I write in a blog but have not told my family and friends about it. It's at I don't sell anything and I don't give my real name or location, so I think it's OK to give you the address on this board. If not, someone will let me know and I'll remove it.

    We have a few things in common. My fibro also started around 1998 but it was a gradual onset and I continued to work until Feb 2001, hanging on by my fingernails. Now I stay home.
  10. tanyasue

    tanyasue New Member

    I am so sorry for all you are going through. I am sorry to hear about the loss of your father. It is very hard and I imagine the holidays have not helped much.

    I am not trying to defend your sister, but to offer a different perspective. Your sisters cannot see beyond their own pain. My guess is that they cannot comprehend that someone could possibly be in more pain (physical or emotional) than they are, so they cannot see yours.

    For some reason the person who struggles the most always gets blamed. I haven't figured that out yet. Comparisons between people are never good. I know some who has Fibro who does better than me (more positive, goes to church, etc.), but she also has a wealthy husband supporting her. There is no comparing things. So what if your sister's friend works-it doesn't mean everyone else can.

    You are great for even trying to get out of bed, remember that! You were willing to try to help your Mother-that is more than many people who are not even sick. Your husband is on your side, that is not only a blessing, but a sign that you made the choice of a good man and have worked hard at your marriage (not to say others have not!).

    I am so, so sorry! I hope that tomorrow is a better day, and if it is not, that we change the gun laws to be able to shoot stupid people....


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