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family understanding

backpainishellbbackpainishell Posts: 970
edited 06/11/2012 - 8:22 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.

  • 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,
  • 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.
  • >:D< I just want to say thakyou, i feel your pain also. It is so difficult with friends and family x

    Angie xx
  • I am having similar problems with my family not understanding. My parents are in their 60's and my grandfather lives with them (he's is still in good health). I am staying with my parents as I recover from microdiscectomy surgery (about 10 days ago). My apartment has stairs, and the furniture is too soft (bed and couch). The surgery came as an emergency, so there was no time to plan on arranging my own home. My mom said I was welcome and she wanted me to stay as long as I needed -- at least until I go back to the NS again and can get around better. They have an extra bedroom, so I didn't think it was a big deal. But ever since the first day I got home from the hospital, little comments have been made about me being here. My dad said on my first morning home that this has been really hard on my mom, that she's at the end of her rope, and she needs her life back. I didn't see how this could be so, but I still tried to just stay in the guest room and not request anything (I was dealing with substantial depression right out of surgery, and really needed support, not THIS.) My mom ended up saying I was no bother and I needed to let her help me. So I thought things were okay.

    Then on Monday, my mom said she needed her maid service to come on Tuesday (I have bad allergies which turn into migraines exposed to chemicals). In the same breath she said she would put me in a motel. That, I knew was ridiculous (the IKE evacuees are here, there are no rooms, not to mention how weird it would be to go to a motel). I of course said I could just go home. So her opinion about me staying had obviously changed. I drove myself to my apartment, and she followed in her car with my stuff. She got me up the stairs and inside. I think that's when she realized how unprepared my apartment is. The "high potty" was still at their house. Not to mention I had just begun rearraning furniture and cleaning before I hurt by back, so the place is a mess. There are too many things that need to be moved. There is also the problem of a too soft foam mattress on my bed and a too soft couch. No place for me to sit. I told her I could lie on the floor sleep, but that is so hard it would cause more pain. She finally acknowledged the dangers of me being there alone (not to mention the stairs) and said to come back to the house. She said she didn't mean for me to go home -- she just wants her maids to come. *SIGH* So I am back at their house, with a headache from the maids. But at least I'm not putting my back at risk by being back at my condo.

    Then today, I heard my mom tell my grandfather that she was going to my apartment today to get some work done. I appreciate anything she can do. It was his response that surprised me. He told her SHE shouldn't do it, that I should do it myself, that I am WELL and can take care of myself. My mom didn't even explain. She just said she wanted to help.

    I really don't get this at all. My parents were there when the NS said no bending, twisting, or lifting. They know I am still dealing with twinges of pain as well as the numbness in my foot and leg. My mom certainly knows I fear I might reinjure my back. She has told me she wants me to be here and knows my apartment isn't ready. But I don't know how to handle these comments indicating people don't want me here. I feel guilty for being here and can't get comfortable. They see me doing my 45 minutes of walking and think I'm cured. I wrestled with the idea of going home, but I really think it's a bad idea. I want help in getting it ready, but until then, I can't understand why they are acting like they don't want me here. If I had a daughter--no matter what the age--and she had surgery where she had to be careful, I would want her to stay with me. I spoke with a counselor yesterday who said I need to make good choices no matter what and not go home until I know it is safe. But it is so hard. Sorry for the long post.
  • Hiya,
    Well i can not tell you what to do. But from my own experience advise you. Stick with it at your moms, and dont push yourself to quick to soon. This is your back we are talking about and you have to take care , even more so since you have had surgery, because this is a week spot. So what ever you do do not make anymore harsh decisions. When you go back to the hospital take your mom with you, see the doctor on your own first, then ask the doctor if he can explain to your mom how you need help, and that you need to relax when in recovery. Good Luck haylie! Keep me posted on how you get on !

    Angie x
  • Angie, thanks for your great advice. Taking my mom with me to see the NS will hopefully teach her a lot.

    I go back to work tomorrow for a few hours, and I'm really nervous about it. Just taking a shower and getting ready will take so much effort. Not to mention driving there and seeing clients at my office for the first time in 6 weeks. I've been longing to get back to my life, but now that it's here, I'm afraid I'm not ready...

    I wish you the best with your situation. I hope you will stand your ground and take good care of yourself--just like I bet you do for other people. :) I wish you the best.
  • dilaurodilauro ConnecticutPosts: 9,726
    Angie, I apologize for being so late to respond here. Your situation and questions do bring up a lot of emotions.
    I have it from both ends. My mother asks how I am doing, but never understands anything about my problems. The same with my brother. My brother is a personal trainer so the only thing he knows is healthy people. Same with my Mother. If she asks how I feel and I answer ok today, her response is, Oh good then you are fine. I give up trying to make them understand. On the other hand, my In-Laws are great, always asking but never intruding. My immediate family, gosh, I could never have gone through 30+ years without them.
    Real friends show concern and ask me, but never make a big deal, because they know I dont.
    Friends in general, ask too much, and I get the "Oh you look good today", which really irks me.

    My overall feeling is that I do enjoy the support, but I dont want to overbearing or constant conversation to be about my spinal problems.

    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Hiya Haylie,
    >:D< Good Luck with going back to work. Just dont over do it. Keep intouch. :)

    Angie x
  • Hiya Ron,
    I am totally sympathetic and understand. Sometimes when friends or family ask "how are you today?" i feel that they dont want to really know. But also seeing it from another view, how can anyone begin to understand the pain we endure when they have never suffered any back problem. What does get to me when you have the odd one saying "aww my back aches" i just want to scream and say i wish i only had an ache. I am glad that you have the support. :)

    Angie x
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