I just need encouragement

Discussion in 'Fibromyalgia Main Forum' started by faithinlove, Apr 9, 2009.

  1. faithinlove

    faithinlove New Member

    If I hear anyone else say,"well you just need to do something and you will feel better." I think I will just scream at them. They do not understand what it is like to have this FMS and CFS. It is the combination from hell. I am sorry, I just had to get that out to someone and try not to tell some of my relatives to leave me alone. Does anyone else feel this way sometime? I try to be positive but I guess this is not a good time for me.
  2. 3gs

    3gs New Member

    Sorry you are experiencing the ignorant relative syndrome. Unfortunaly its common with this dd.

    Print out letters(good ones here)and then let it go or you may have to let them go. Its almost easier some times to be alone.

    Tell them nah think I like feeling like death all the time so I think I'll just keep doing nothing its so much fun.

    good luck(could go into bathroom and scream)
  3. nixon

    nixon New Member

    I'm SURE we have all got that at some point or another!! If people REALLY understood what we feel like they MIGHT NOT make all of these STUPID COMMENTS!!!!!!! It can be quite annoying!!

    I have a (so-called) friend, that tells me ALL of the time " YOU JUST NEED TO GET OUT, and HAVE A FEW DRINKS ".......HA- since developing FMS/CFS I can't STAND to drink!! I USED to like to go out and have a few with friends, but if I do it NOW.......it JUST KILLS me, puts me down for about a week!! Totally NOT worth it, I'd rather stay home, ALL ALONE and rest, or read a good book!!

    I've lost most of my friends, because I just RARELY ever feel like going out, and it usually CAN'T be planned- because I NEVER KNOW when I'm going to feel half way decent!! It sucks, but hopefully ONE DAY we will get some answers to what's behind this DD.
    We can only TRY to stay positive, as HARD as it may be sometimes!! Andrea
  4. DemonFairy

    DemonFairy New Member

    "Ignorant Relative Syndrome". What a great name for it. They always seem to know what's best for us, don't they? As if we hadn't thought of it. Yeah, it had never occurred to me to try to "walk", "get some fresh air", "pull (myself) up by (my) bootstraps", "eat better", "take vitamins", etc. And for some reason, all of these people think it would be best if I stopped taking my pain meds, as if my pain meds are the problem. Yeah, you'll pry my pain meds from my cold dead hands. And then, then your drug addict wives can split them up and use them for "an extra boost for cleaning the house" or "getting high", but in the meantime, *I* need them for PAIN.

    Hang in there. My advice for you - quit trying to argue with the ignorance once you've tried to lead them to various sources of helpful information. They're either incapable of empathy or purposely want to stress you out. Regardless, you need to let it go because the stress wipes us out. I'm speaking from very very recent experience and once I told my brother to eff off, I started feeling a little better than I had been during his relentless email campaign calling me a faker. I told him to quit contacting me and I really did stop reading anything that he wrote to me. It was nice giving myself the permission to not engage him in his little games. Maybe you need to do something similar.

    At the very least, know that WE understand what you're going through. What we want for you is to feel better, so whatever YOU think you need to feel better, that's what you should be doing. It's your life, your body, and you know you best. If you feel like you need to nap all day, do it. When we try to force ourselves to do things that are beyond our physical capabilities at the time, it only damages us more and makes us feel worse. Be gentle with yourself.
  5. shari1677

    shari1677 New Member

    I just found out a friend of mine is pregnant, 6 weeks. She was complaining about how tired she was, that all she wanted to do was sleep.

    That was when I decided to tell her that is how I felt all the time with this condition. I could tell by her reaction that she didn't quite believe me and was possibly belittling her symptoms.

    There is no getting through to some people, well, all people it seems.

    FYI - feel free to vent here - all of us do.
  6. FMsaddenedspirit

    FMsaddenedspirit New Member

    I trully understand .. they just don't get it.. !!!!!!!!

    yesterday .. my husband who I thought got it... totally did not....

    I have been in such a bad flare since I had some dental work done last week Thursaday..
    so yesterday he comes home.. and I get off work .. sit my but on the couch and talk with him.. I smiled and laughed. .. and mind you I had no intention of cooking or doing anything , becasue I hurt and am so very very fatiuged. .. normal around here...
    later a friend came by and I talked to her for a min and then said < sorry i have to go back in the house.. I went up to go to bed.
    my huband comes up asking whats wrong ... I thought you where ok because you where smiling earlyer..... God how many times do we need to say ....just because I smile does NOT mean I feel good. ... so how many times..... I was crused.. I really thought he got it .. he is the one that lives with me for Gods sake

    sorry Faithinlove... .. at least we all have each other

    Huggles my dear
  7. jasminetee

    jasminetee Member

    It's in my nature to be social with everyone in my life and empathetic towards them. It's so hard for me to cut people off or at least minimize my contact with them. But you all are right on when you say that's the way to deal with it. I've read countless books and websites on this issue and every expert in this area agrees.

    I get a lot of strength from reading how all of you cope with this universal problem most of us with invisible illnesses have to deal with.

    I'm down to 2, sort of 3 people in my life that get it and I feel lucky~ I often think to myself that the way I'm being treated is the way all of us are being treated. What they do to any one of us, they do to us all.

    Faithinlove, I understand just how you feel.

    [This Message was Edited on 04/10/2009]
  8. greatgran

    greatgran Member

    I feel the same way and I love your description "The combination from hell" how true.

    I don't have an answer but sure can relate. My daughter just called and wants me to keep the greatgrans while she goes shopping for their Easter Baskets, etc. I feel like crap but told her maybe this afternoon, now I will be all anxious until its over with.

    What this DD does to my mind and body.

    God Bless You,
  9. loto

    loto Member

    I do, and it mostly comes from my husband. He seems to think if I get more excercise, and off my meds I'll feel much better. So, I says to him, "do you want me to live -out of bed?!" The meds I take is what keeps me going. And then I hear people say, "well, those pain killers are so addictive". Well, so be it! If they help me with my chronic pain, so what!!!! I refuse to live with pain that can be debilitating, so if I'm addicted, I'm addicted. They just don't get it! I'm not abusing my pain meds, I'm following the prescription. They can @#$% my $%^!!!!!
    Sorry, but that's how I feel about it!!
  10. Anafun

    Anafun Member

    It is called M.E-Doctors disbelief kills woman..you can google it on You tube.