How do I make my family understand? Really bad day today

Discussion in 'Fibromyalgia Main Forum' started by nitengal42in, Aug 20, 2003.

  1. nitengal42in

    nitengal42in New Member

    Today I got into a huge argument with my mother. I was having a really really bad FM/CFS day. I dont really have flares...I live in a constant flare. But some days are just unbearable. Today was one of those days.

    My mother was supposed to come to my house today. I live about 2 hours from her. I called her and told her that I just did not feel like having company today and she got beligerent with me. She made me feel lower than dirt. I told her that I was in so much pain, all I wanted to do was go back to bed. She said, and I quote, "I am in pain too but you dont hear me complaining about it!" WTF? She has no clue what I go through on a daily basis.

    Well, it proceeded until she hung up on me and I was an emotional mess. And, we all know that stress only makes it worse. It is after 9 pm and I am just now getting on the computer for the first time today. I did not even get out of bed today until after 2pm.

    How do I make her understand that it is NOT about her...but about me and my disease? I have tried so hard to educate her on this DD but she does not seem to get it.

    I am sick and tired of being sick and tired.

    Help!

    Stacey
  2. Mtnflower

    Mtnflower New Member

    I was dxed with fibro 25 years ago and some members of my family still refuse to catch on. I've learned to ignore their opinion as ignorant on this subject. I simply stay away and don't let them make me feel guilty when I do go around them. I spent a long time trying to get my mom to understand but she doesn't care too. I finally quit wasting my time.

    I have a few family members and friends that are supportive. I also have this site to help.I try to fill my life with positive people. It helps.

    Good luck,
    Mtnflower
  3. BILLCAMO

    BILLCAMO New Member

    ABOUT GOOD OPINIONS & GOOD ADVICE..... THEY ARE FREE & YOU DON'T HAVE TO LISTEN OR TAKE IT...... IT IS VERY DIFFICULT ...... IF NOT IMPOSSIBLE , TO UNDERSTAND THESE DD'S. UNLESS YOU HAVE OR HAVE HAD THEM..... HOW DO YOU EXPLAIN THAT SOMETHING TOOK YOUR LIFE , RAN IT THROUGH A BLENDER , & THEN POURED IT INTO A MOLD MADE OF JELLO... &.. JUST FOR LAUGHS & GIGGLES... THAT "SOMETHING" TAKES IT OUT OF THE FRIDGE . , JUST TO LET THE MOLD MELT A LITTLE.... ALL I CAN SAY IS , DO YOUR BEST TO BE PATIENT WITH YOUR FAMILY & FRIENDS. FOR THEY DO NOT /CANNOT UNDERSTAND. & THEY ARE FORTUNATE NOT TO HAVE TO FIGHT THESE DD'S..... I CAN'T REMEMBER THE EXACT SCRIPTURE QUOTE , BUT IT GOES SOMETHING LIKE THIS....... FORGIVE THEM LORD , FOR THEY KNOW NOT WHAT THEY DO...... TAKE CARE & BLESSINGS !!!! BILLCAMO.
  4. petfriend

    petfriend New Member

    Hi Stacy:
    I also know what it's like to have people not understand. Some of my friends tell me to go out and get some exercise!!
    Well, I just choose to ignore them when they do that to me. I used to feel guilty and tried to take long walks and went to swimming exercise classes and other exercise classes and fought to overcome the way I was hurting and took huge amounts of expensive vitamin programs (which some of my friends sold me) - all the time not knowing what was wrong with me. Many of these friends' suggestions put me in bed in excruciating pain for days.
    Well, finally a neighbour and I were talking and she had some knowledge of Fibromyalgia and said it sounded like I had all the symptoms. I went to the web and looked it and Whammo - there it was. I printed it out and checked off all the symptoms I matched with my symptoms and took it to my Dr. Previous to that, I had been diagnosed with severe OA in my knees and am waiting for an appointment with an Orthopaedic Surgeon and my Dr. has also referred me to a Rheumatologist, who I will be seeing on Sept.
    To cut a VERY long story short, If I had continued to listen to my family and friends, I would still be doubting myself and fighting to rid myself of whatever I had.
    I'm so happy we have this board to come to and can talk to others who understand.
    I'm here for you, Stacy. Have a good rest and don't let anyone bully you into feeling guilty because you need to do that.
    I might suggest that you do a print-out like I did that explains what you have and give it to your family or friends so they can be informed. If they refuse to be understanding or supportive, then don't let them get you upset. Come and talk to us here.
    Love and hugs - Irene
  5. Ipegasus

    Ipegasus New Member

    Hi Stacey,



    A friend of mine with chronic pain once taught me to use the old excuse, Oh, I have something burning on the stove or the kids need my help. Whatever works to get that person off the phone. If she still complains, at least you have a way to get her off the phone and not have to listen to her rants. Eventually, she will not call or start changing her evil ways. I agree with Irene but some people want you, even expect you to take care of THEM, and they do not really notice your problems. They are hopeless. I was also told wisely, sometimes we need to make our own families. That sounded so sad but I have had a small family and my favorites are now passed away. My brother thinks I am mean but he respects my choices. I carried the families burdens all my childhood and now I am tired. I don't have the energy to argue over meaningless things. I save that for things that will change the world and make it better.
    I hope that helps. My PT said to try this example, have them hold a few large books, like phone books, ask them to tell you when it feels like they have to put them down. When they tell you now, tell them they can't, as it gets harder and harder to keep holding those heavy books, tell them that is what FM is like. Except we cannot control our pain. Our body has to keep carrying around this pain until we can no longer stand it and have to rest. Rest doesn't get rid of the pain, it just makes it more bearable.

    Most people can relate to that example.

    Good luck, I hope tommorrow is a better day.

    Pegasus
  6. Adl123

    Adl123 New Member

    My mom did not really understand, either. I learned from her, though, that she felt helpless and guilty because she couldn't help. Maybe your mom feels the same. People act in all kinds of wierd ways to cover up a sense of guilt, even if it is subconscious.I did, however, lose my best friend of 20 years. She had the same reaction your mom had - "I'm tired, too". I was in bed 3 years at the beginning and she never contacted me or would speak to me when I phoned. It can be very painful when someone seems not to understand. Some people have not developed the ability for compassion that allows them to understand things outside of their experience.
    I am sorry you are living through this, the illness is enough, I know. Give her space and keep your energy for your own healing. - As for helping them undertand, I used to print out an explanation of CFIDS/Fibro, and the symptoms, and hand it out for friends and relatives to read when they think they are ready. Sometimes it helped, but people are ready to understand when they are ready, and no one can make them,. only nudge them along. God bless. You are not alone.
    Take care, Terry[This Message was Edited on 08/21/2003]