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family understanding

backpainishellbbackpainishell Posts: 969
edited 06/11/2012 - 7:22 AM in Matters of the Heart
my parents live over 200miles away. so they do not see me from day to day. around this time of year my mum likes to organise christmas, meaning who is going where for christmas lunch. well for the past five years my parents have come to my house for christmas lunch and they visit friends while they are here. as they do not see me from day to day, they dont understand how my health has declined. the other day mum rang and asked if her and dad could come here for christmas and i said no. this is due to how my health has got that much worse. the moral of this post is my parents, family, friends, and fiance do not understand how much pain im in, and how my health has declined. does anyone else have this problem? and feel as frustrated as i do! sorry for the long post .



  • Angie,

    Sometimes having activity to distract us, helps give us a mental break from the pain. Do you think there's any way that you could convince your mom that if she comes, she has to help you out? Maybe by her seeing you, it will help her to better understand.

    Just a thought.

  • hiya C

    she saw me last christmas, when my back kept on going into spasms. It did not make any difference to her.

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  • how do your friends react to your illness/disability? :O

    anyone can reply to the question above! :?
  • ON whether they are friends or aquaintances. My friends are very cool about it and supportive and want to do whatever they can to help.
  • IM sending you a big hug, it has got to be very hard when loved ones aren't somewhat understanding to are daily feelings of we are going through. sometimes as hard as it is I have had to say no to family, at times it was physically imposable or to painful, or to much stress and i could have a day with pain under control and just a little added stress can send my pain... flying...
    bottom line, its hard to say no,specially if that person doesn't understand why you have to say no. but you have to look out for you,
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  • hiya,
    I have just read your post and i never looked at it they way you have just pointed somthing out to me. You are right i do have to look after me , and i will have to say no and let them down. Its just the feeling guilty bit i dont like!

    angie x
  • Hiya,C

    That is so nice and i am so pleased for you, that you have the right kind of support around you.

    angie x
  • One of the difficult things with family and friends, is that they don't actually feel your pain. Since they can't feel it, it's not as important to them as it is to you. That's why here, we can feel your pain and understand.

    Family and friends get frustrated, because just as you said, they can plan for themselves days in advance since they have no pain. We can't do that since we don't know if we will be able to do something tomorrow other than stay in bed or in a dark house.

    Family and friends get tired of making plans that include us only to have us "screw" them up. So it doesn't take long before they just quit making plans that include us.

    I have to make plans for myself that tag along with what my family and friends want to do. Some times I really have to force myself to go and try to be as socialable as possible. Yesterday I hurt and wanted to do nothing but stay home. I had however made plans to go diving with my husband and some others. I forced myself to go, knowing I could always just sleep in the van if I couldn't handle it. But the mind is a powerful tool in fighting pain and I was able to do one of the two dives. I sat the second one out, not because I couldn't do it, but because I knew I would pay for it today.

    That's the other thing that family and friends have a hard time understanding. They see us one day being all active and doing things and figure that we are fine. Especially friends, because they don't see us the next couple of days when we are paying for the activity and writhing in pain. Family on the other hand don't understand how we can have a good day and then a very bad day.

    If they could feel our pain, it would change everything!

    Sorry to ramble.

  • I just had a very deep understanding of a friend that I thought had "abandoned" me during all of this. We've been hunting buddies for years and he's been like a big brother to me. I've just adored him and the feeling was mutual. When I got hurt he called. When I had surgery, he called. When I got worse, he stopped calling. He'll get in touch with me about every 3 months now and just for a minute and it's been that way with most of those hunting buddies of mine. He only lives an hour away and has not once been to see me.

    A friend of mine is coming out to see me from Idaho and hunt with this friend of mine. When she spoke to him she told me that he was crying when they talked about me. He's so sad about what I can't do anymore, how different my life has become, that he just can't bear to talk to me. Wow.

    It makes me wonder just how my family really feels. They all try to be positive and hopeful but sometimes I can see that pity in their eyes, sometimes it's frustration, alot of times it's denial.

    Isn't it kind of like what we go through in our own minds? I know that I've been through that range of emotions myself and that I find myself not asking for anything because I'm too proud to admit that I can no longer do them. Therefore my family wrongly thinks I feel better than I do.

    We all need to learn to communicate better with the "normals" and to try to be true to our own bodies. I know that I'm not doing myself any favors, like some of the rest of you, by trying to do things that are out of the scope of what I'm able to. This post has reminded me that I, like you Angie, need to tell my family what my limitations are and stick to them.

    You're so right C, I do that all the time. It's like robbing Peter to pay Paul. I can walk the mall one day but will end up in bed for 2 after that. Sometimes though, it's worth the price, especially when it comes to family.

    Good luck to you Angie. Stay strong and true to yourself!

  • I myself have been in the same situation,its all so true and i know how you feel and felt.
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