Welcome to the Quilting Board!

Already a member? Login above
loginabove
OR
To post questions, help other quilters and reduce advertising (like the one on your left), join our quilting community. It's free!

Page 1 of 2 1 2 LastLast
Results 1 to 25 of 34

Thread: Amazing explaination of what a person with chronic pain goes through.

  1. #1
    Super Member Quiltforme's Avatar
    Join Date
    Aug 2010
    Location
    Beautiful Washington state!
    Posts
    3,340
    http://www.butyoudontlooksick.com/na...poonTheory.pdf

    Murphy posted this link in another post and wanted to pass it on to those of us who suffer chronic pain and have a hard time with others understanding. I look perfectly healthy talking to me and looking at me you would never know I suffer from excrutiating back pain. This 2 page letter is so perfect I gave it to my mom and will give to my family they know what I live with but don't understand how I can do one activity but not others. Trying to explain how I have to prepare for a trip to the store takes 2 days. If you suffer from a chronic illness print this up and keep it on you it really does help explain to others wha you have to go through!
    Thank you Murphy for posting the link!!

  2. #2
    Power Poster
    Join Date
    May 2008
    Location
    MN
    Posts
    20,150
    It's difficult for those that are TABs (temporarily able-bodied) to comprehend what it is like to live like that.

    Thank you for posting that link again.

  3. #3
    Moderator Jim's Gem's Avatar
    Join Date
    Jun 2008
    Location
    Camarillo, California
    Posts
    35,480
    Wow!! Like her friend, I never realized how much this can affect your life. I have some pain, so I guess I have lots of spoons, not unlimited but usually enough to let me do most of what I "need" to do.

  4. #4
    Junior Member dutchie's Avatar
    Join Date
    Oct 2010
    Location
    Sacramento, CA
    Posts
    288
    This is very similar to the "energy marbles" explanation that I use to describe my on-going battle with the mind-numbing fatigue my MS creates. Like Christine's spoons, I have only so many energy marbles to play in any given day. When they're gone, they're gone, and I'm fairly useless for the rest of the day.

    I'm going to print it out and post it on the refrigerator to remind my household that while I don't look sick, I'm not 100% and soup and sandwiches will suffice for supper.

  5. #5
    Power Poster amma's Avatar
    Join Date
    Jul 2007
    Location
    Out searching for some sunshine :-)
    Posts
    59,088
    Blog Entries
    1
    Thank you for posting this... it really puts hidden medical and or mental issues in perspective (((HUGS)))

  6. #6
    Super Member
    Join Date
    Mar 2010
    Location
    Tennessee
    Posts
    2,305
    What a great way to explain any type of illness. It is even easy enough for children to understand.

  7. #7
    Junior Member pamdux's Avatar
    Join Date
    Mar 2010
    Location
    Glen St Mary, Florida, USA
    Posts
    178
    I love how she explains being disabled. It is the best explanation I have ever seen. Thank you for posting this.

  8. #8
    Super Member Murphy's Avatar
    Join Date
    Oct 2010
    Location
    Iowa
    Posts
    8,899
    Blog Entries
    1
    Thanks for passing this on. It definitely bears repeating ;-)

  9. #9
    Senior Member craftyone27's Avatar
    Join Date
    Oct 2010
    Location
    Virginia
    Posts
    958
    Blog Entries
    2
    Thanks so mucj for posting this!! I also suffer from the "But you don't look sick - act sick" syndrome. I am only 44 and justslightly overweight and always put a good face on before I go out in public. But I have had 5 back surgeries and am in chronic pain. I also have a teenaged daughter with a developmental disability. Some days I spend with her doing her Special Olympics activities cost me 2 days worth of "spoons" at the other end. It is really difficult dealing with the odd lookks from acquaintances and strangers when I climb out of my car in the handicapped spot, or tell someone that I am on permanent disability at such a young age. Trust me - you can't always judge a book by it's cover - so try not to judge if you don't know the whole story.
    Thanks for listening.

  10. #10
    Super Member earlylace's Avatar
    Join Date
    Nov 2009
    Location
    Northwest, NJ
    Posts
    1,558
    thank you very much for sharing this link, it helped me understand how to tell others how I feel, even my family sometimes don't understand because I don't look sick either, I have chronic pain.

  11. #11
    Super Member aneternalpoet's Avatar
    Join Date
    Jul 2010
    Location
    Mountains of eastern Oregon
    Posts
    1,025
    Blog Entries
    15
    With major medical issues I deal with each day, heart related, I am always aware of those around me who seem to suffer in silence with their medical situation, too. I know that most of us, who do undergo such challenging illness, we are most generous in the patience that we show to others who also hurt.. I know that today, many of my thoughts go to the one who shared this link, and Jade, you know that I am blessed to know you, though I dont know you in reai life. Yet, I have gained so much encouragement in being able to pray for you, as you have prayed for me. Thank you for sharing your heart wtih those who hurt.. your generous spirit of concern goes a long, long way, girlfriend!

  12. #12
    Super Member
    Join Date
    May 2009
    Location
    Merced, CA
    Posts
    4,230
    Blog Entries
    1
    This brought tears to my eyes. I saw my dear, late husband valiantly fighting pain and trying not to let me know how much he hurt, so he could be strong for me.
    When I was diagnosed with breast cancer and we scheduled a mastectomy, I found him kneeling on the floor beside our bed, praying for my life, even though he was a sorta fallen away Catholic.
    I had to help him to his feet as even then he was so much in pain that he could not rise on his own, but he loved me enough to try to help me in the only way he could. He never knew how much just being my friend helped me for all our years together.

  13. #13

    Join Date
    May 2010
    Location
    lafayette, in
    Posts
    263
    wow, how so true, you can't understand unless you live with things like this everyday and i would love to hand this to everyone who gives me that "look", just remember someday we will all be better....

  14. #14
    Super Member earlylace's Avatar
    Join Date
    Nov 2009
    Location
    Northwest, NJ
    Posts
    1,558
    you are right, some day we will have new bodies, just as the Lord promised to those who love him.

    Quote Originally Posted by squeakie
    wow, how so true, you can't understand unless you live with things like this everyday and i would love to hand this to everyone who gives me that "look", just remember someday we will all be better....

  15. #15
    Super Member amandasgramma's Avatar
    Join Date
    May 2009
    Location
    La Pine Oregon, USA
    Posts
    5,911
    Thank you --- I wish I'd had this a long time ago

  16. #16
    T-Bones mom's Avatar
    Join Date
    Mar 2010
    Location
    Northern NY
    Posts
    1,938
    I have the best husband. When he comes home from work and I say I can not cook tonight or If I cook I can not do the dishes he understands 100%. He will just say do you want me to cook or go get something for us or do you want to go out. He is great. I have 5 children all who are on their own now, who also understand most of the time. I guess I am one of the lucky ones. I do get stares when I get out of the car when I park in the handicap parking, but I try to ignore them. If they could walk a mile in my shoes (I can't anymore). I feel as long as my family understands that is all that matters.

  17. #17
    Moderator Up North's Avatar
    Join Date
    Mar 2008
    Location
    North East Lower peninsula of Michigan
    Posts
    6,156
    Wow what a powerful explanation, My Dad is disabled and has constant pain so bad he shakes from it, It helps me understand why he can not make it more than a half hour is a wheel chair or someplace besides his lift chair at home. He is my Hero and Is always upbeat but I can tell when he is hurting and do my best to get him out of those situations.

  18. #18
    Super Member wildyard's Avatar
    Join Date
    Mar 2010
    Location
    Upstate NY, north of Syracuse Area
    Posts
    5,638
    I too am blessed with a family that understands and supports me, especially my DH. My friends too, except I wish that they would stop asking me how I'm doing every time I see them. LOL.. the answer isn't going to change.. I keep telling them, this is how I'm going to be.. always.. but they keep asking, hoping I'll have a miracle or something. I just say I'm as good as ever. LOL.

  19. #19
    Moderator Up North's Avatar
    Join Date
    Mar 2008
    Location
    North East Lower peninsula of Michigan
    Posts
    6,156
    Quote Originally Posted by wildyard
    I too am blessed with a family that understands and supports me, especially my DH. My friends too, except I wish that they would stop asking me how I'm doing every time I see them. LOL.. the answer isn't going to change.. I keep telling them, this is how I'm going to be.. always.. but they keep asking, hoping I'll have a miracle or something. I just say I'm as good as ever. LOL.
    When People ask my dad that (he is in constant pain) he always answers worse, or Better what ever mood he is in. Just one word. They know the answer but are hoping for your sake it changes.

  20. #20
    Super Member Roberta's Avatar
    Join Date
    Nov 2006
    Location
    China, ME.
    Posts
    2,866
    Blog Entries
    1
    Thank you Jade. Maybe now my DH will understand my fibromyalgia pain.

  21. #21
    Super Member
    Join Date
    Oct 2009
    Posts
    5,837
    Blog Entries
    1
    it has been a part of my signature here for a while now. i have fibromyalgia. Christine has Lupus and FMS, and she does a great job of explaining it.
    i bought the poster a few years ago, and it hangs in my sewing room.
    Blessings to all who suffer in silence and those "who don't look sick". it would be easier for people around me to understand if i were puking, or had a cast on..

  22. #22
    Super Member Ditter43's Avatar
    Join Date
    Jan 2007
    Location
    Crystal River Florida
    Posts
    9,770
    Thank you so much for posting this. I sent it to my sister who has lupus and to my dd who has fibromyalgia and chronic fatigue syndrome and my youngest dd who has been sick for years with no definitive diagnosis. I know for myself, having fibromyalgia and chronic back problems, I have to constantly monitor my energy levels and be careful not to over do . It can cost days of pain. Mostly I feel sorry for my DH because I can't do a lot of things he would like us to do together. Fortunately, he is very understanding. Not all spouses are. :|

  23. #23
    Super Member
    Join Date
    Oct 2010
    Location
    San Bernardino
    Posts
    4,298
    Thank you ,Thank You, I Know All About That Kind of Pain.I Have People tell me all the you don't look sick But i have Lupus you have good days and Bad days and you Have to Plan Each Day And you Pray A Lot and I mean A Lot.

  24. #24
    Super Member wildyard's Avatar
    Join Date
    Mar 2010
    Location
    Upstate NY, north of Syracuse Area
    Posts
    5,638
    Maybe I'll make a sign to wear around my neck that says, I'm not sick, I have a chronic condition and my condition is good for the condition I'm in.

  25. #25
    Super Member Quiltforme's Avatar
    Join Date
    Aug 2010
    Location
    Beautiful Washington state!
    Posts
    3,340
    AMEN!!!!

    Quote Originally Posted by squeakie
    wow, how so true, you can't understand unless you live with things like this everyday and i would love to hand this to everyone who gives me that "look", just remember someday we will all be better....

Page 1 of 2 1 2 LastLast

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  

SEO by vBSEO ©2011, Crawlability, Inc.