Were's the heroism for CFS?

Discussion in 'Fibromyalgia Main Forum' started by beans, Nov 15, 2002.

  1. beans

    beans New Member

    struggle daily with CFS and for many years I have lived this skeleton like life.
    I am a veteran now.

    I have mostly learned to take one day at a time.
    I do just enough of every thing to get by .
    I take care of the most pressing of family needs each day.

    The days I do not take care of pressing needs every thing piles up.
    Some days are a greater struggle in my mind when I am well enough to do some thing
    I enjoy doing and throw all caution to the wind and do it.

    I then suffer for it not in body and mind. Then in my mind.
    Because the things I left behind that needed done the noticeable things
    nag at my mind and so my inner peace is disturbed.

    It takes longer to get caught up.

    I struggle greatly on days I have to clean house and do laundry so much energy has to be forced out of my body
    and these things do not make my mental being happy and complete.
    They are just endless energy zapping chores.

    My days are slow .
    But I am positive and happy most often.
    I find joy in simple quiet peaceful things.

    I endure with out help of most friends.
    I may get a phone call from time to time.
    But usually only from the same friend.

    But rarely any other kind of emotional support.

    At first friends wanted to know the diagnoses .
    Then they wanted to give me advise on how to heal my self.
    Then many decided they did all they could and continued on with their busy lives.

    From time to time I make a new freind and the same routine seems to happen.
    What is CFS what are you doing for it. etc.

    I have friends my age who are very sick one has cancer and other illness's that you go to the hospital for.
    One terminal and the other not.

    These girls are hero's in the eyes of others.
    I feel for them they are truly suffering.
    They never knew real illness until these problems arose.

    They are real troopers.
    Others friends talk about every detail of there life's how proud they are of these girls .
    What the doctor tells them.
    How good they are doing.
    These girls are getting attention daily.
    One for two years she is doing excellent and she will die with in the next few years of cancer.
    But this girl has more energy and life going than I do.
    The last I called her call was screened by her daughter and she could not talk because she was running the sweeper.
    The women broke her exercising and she has bone cancer and she was running a sweeper.
    The same day I was trying to find the energy to run the sweeper at my house.

    It made me so mad that I drove my self harder on tons of caffeine.
    And forced my self through foot cramps.

    If this girl needs help all she has to do is call a friend she has a big support group so she is living a very full life.
    She does not have to cook if she can not some one else will, she does not have to clean house if she can not some one else will etc.

    She is invited to stay in nice places with friends and to go to other events she often finds the energy to go.
    Vacations are planned for her by others she needs to get away to the beach so they take her to a big beach house on both the west and east coast.
    Spa days are planned again I am not included.

    The other girl will heal and live a long life.
    She had a bad routine operation that left her with worse problems then before her operation.
    She has gotten so many flowers and phone calls and food for a long period of time that she got sick and tired of it.
    She told another friend said she wanted to be treated as normal.

    I could use the extra food on bad days.
    When I do not want to cook I have to eat take out food.
    When I do not want to clean house it stays dirty.

    I am not wanting to sound whiny.
    I am strong I am surviving.
    I am not wanting to sound jealous.

    It just seems inside of me it hurts.
    I have been in need so often.
    And the same people that are in my circle of friends like to talk about these other women and how they are doing and what all they are doing for them.
    I hear how wonderful they are etc.
    I am also supportive of what they are going through.
    I send cards and call them.
    They rarely take my call.
    I know how to struggle .
    For many years I have struggled with an illness that slows you down.
    With out support of mothers and fathers and sisters and brothers in-laws included.

    I am here also for these girls but do not need me.

    They have stronger friends who are trying to heal them.
    I would not try to heal them.

    I think the one girl even though she will heal and live, will have health problems for years she is experiencing deep depression now.

    I know by my life that at some point if her illness drags on others will get bored with the lost romance of her struggle and she will
    wonder were her zealous friends went.

    And she might think of me and know that I tried to reach out to her. I have sent card and left messages on her machine to call if she needs a friend to talk to .

    I would love for one of these women friends to do the same for me.

    But my slow life of Chronic Fatigue is not some thing for others to brag about and talk about.
    Maybe these friends know that so and so will die so they only need to support her for a few years.

    The other girl will get much better and go back to work and so with all the doings for her they helped heal her.

    I am a life commitment be my loving friend for life.

    Have you ever seen a movie were the poor heroin has Chronic Fatigue Syndrome.
    No she always has cancer or some other disease.
    She dies. It makes for a good cry a good movie.
    It makes Romance in a strange sorta way.

    Beans








  2. beans

    beans New Member

    struggle daily with CFS and for many years I have lived this skeleton like life.
    I am a veteran now.

    I have mostly learned to take one day at a time.
    I do just enough of every thing to get by .
    I take care of the most pressing of family needs each day.

    The days I do not take care of pressing needs every thing piles up.
    Some days are a greater struggle in my mind when I am well enough to do some thing
    I enjoy doing and throw all caution to the wind and do it.

    I then suffer for it not in body and mind. Then in my mind.
    Because the things I left behind that needed done the noticeable things
    nag at my mind and so my inner peace is disturbed.

    It takes longer to get caught up.

    I struggle greatly on days I have to clean house and do laundry so much energy has to be forced out of my body
    and these things do not make my mental being happy and complete.
    They are just endless energy zapping chores.

    My days are slow .
    But I am positive and happy most often.
    I find joy in simple quiet peaceful things.

    I endure with out help of most friends.
    I may get a phone call from time to time.
    But usually only from the same friend.

    But rarely any other kind of emotional support.

    At first friends wanted to know the diagnoses .
    Then they wanted to give me advise on how to heal my self.
    Then many decided they did all they could and continued on with their busy lives.

    From time to time I make a new freind and the same routine seems to happen.
    What is CFS what are you doing for it. etc.

    I have friends my age who are very sick one has cancer and other illness's that you go to the hospital for.
    One terminal and the other not.

    These girls are hero's in the eyes of others.
    I feel for them they are truly suffering.
    They never knew real illness until these problems arose.

    They are real troopers.
    Others friends talk about every detail of there life's how proud they are of these girls .
    What the doctor tells them.
    How good they are doing.
    These girls are getting attention daily.
    One for two years she is doing excellent and she will die with in the next few years of cancer.
    But this girl has more energy and life going than I do.
    The last I called her call was screened by her daughter and she could not talk because she was running the sweeper.
    The women broke her exercising and she has bone cancer and she was running a sweeper.
    The same day I was trying to find the energy to run the sweeper at my house.

    It made me so mad that I drove my self harder on tons of caffeine.
    And forced my self through foot cramps.

    If this girl needs help all she has to do is call a friend she has a big support group so she is living a very full life.
    She does not have to cook if she can not some one else will, she does not have to clean house if she can not some one else will etc.

    She is invited to stay in nice places with friends and to go to other events she often finds the energy to go.
    Vacations are planned for her by others she needs to get away to the beach so they take her to a big beach house on both the west and east coast.
    Spa days are planned again I am not included.

    The other girl will heal and live a long life.
    She had a bad routine operation that left her with worse problems then before her operation.
    She has gotten so many flowers and phone calls and food for a long period of time that she got sick and tired of it.
    She told another friend said she wanted to be treated as normal.

    I could use the extra food on bad days.
    When I do not want to cook I have to eat take out food.
    When I do not want to clean house it stays dirty.

    I am not wanting to sound whiny.
    I am strong I am surviving.
    I am not wanting to sound jealous.

    It just seems inside of me it hurts.
    I have been in need so often.
    And the same people that are in my circle of friends like to talk about these other women and how they are doing and what all they are doing for them.
    I hear how wonderful they are etc.
    I am also supportive of what they are going through.
    I send cards and call them.
    They rarely take my call.
    I know how to struggle .
    For many years I have struggled with an illness that slows you down.
    With out support of mothers and fathers and sisters and brothers in-laws included.

    I am here also for these girls but do not need me.

    They have stronger friends who are trying to heal them.
    I would not try to heal them.

    I think the one girl even though she will heal and live, will have health problems for years she is experiencing deep depression now.

    I know by my life that at some point if her illness drags on others will get bored with the lost romance of her struggle and she will
    wonder were her zealous friends went.

    And she might think of me and know that I tried to reach out to her. I have sent card and left messages on her machine to call if she needs a friend to talk to .

    I would love for one of these women friends to do the same for me.

    But my slow life of Chronic Fatigue is not some thing for others to brag about and talk about.
    Maybe these friends know that so and so will die so they only need to support her for a few years.

    The other girl will get much better and go back to work and so with all the doings for her they helped heal her.

    I am a life commitment be my loving friend for life.

    Have you ever seen a movie were the poor heroin has Chronic Fatigue Syndrome.
    No she always has cancer or some other disease.
    She dies. It makes for a good cry a good movie.
    It makes Romance in a strange sorta way.

    Beans








  3. beans

    beans New Member

    Yes That word abandon yes so much.
    I been abandoned.
    It not only happens in family and with friends but with doctors also.
    My cat is almost always loyal.
    My husband is loyal but very busy working to support the 3 of us.
    One or two other new friends are good phone buddy's from time to time.

    Abandonment hurts it is lonely.
    beans
  4. lilladybug

    lilladybug New Member

    Beans....
    OH MY!..... how you just touched my heart and soul to the core.
    I would normally sit and think about what to say but this has hit home. I am weeping...you have completely embodied the same feelings I have/had felt along this long lonely journey. YOU ARE SO....eloquent,and expressive in EVERYONES LIFE! Significant, larger than life! Important and monumental in your writings more than you may know!

    The abandonment *is* hard, but the last line of your writing....it is something that is more true and honest and genuine.... (to me at least and *feels* like we are on the same page as well.)

    "She dies. It makes for a good cry a good movie.
    It makes Romance in a strange sorta way."

    I am choked up...cannot see from the tears and can empathize with you deeply.

    Maybe this is daft reply post but when you connect
    SO PROFOUNDLY AND DEEPLY with a statement and the WHOLE content of your post...I knew I must post to you and bow gracefully and *acknowledge* your writing!
    The connection to your post helped me to release alot of my anger and struggling to know that YOU too feel this way.

    I too have several friends one is sick with CFIDS for a long time you wouldn't know it though as she runs her sweeper more times in a week than I can eat! My other friends have slowly dropped off the face of the earth....mostly out of fear I am sure...or ignorance and are happily bouncing along being quite oblivious in their days. One is in ICU, her heart is rejecting itself from her own body...she too modeled and was on TV shows and get flowers and cookies and meals etc. her visitor schedule would beat Presidents Bush in a day! Others are *ahead* of me in their recovery or "overcoming" of this illness....it is bittersweet for me some days.

    I wanted to point out some poignant:
    (physically painful, keen,keenly distressing to the mind or feelings: poignant anxiety, profoundly moving, touching, a poignant memory, piercing, incisive, poignant criticism, neat, skillful, and to the point: poignant illustrations supplementing the text, astute and pertinent,relevant, poignant suggestions, agreeably intense or stimulating: poignant delight. Sharp or sour to the taste)
    passages in your writing...as they give me strength and I bond with YOU on them intensively!

    The sole purpose of pointing them out is not to sever your words but to celebrate *YOU*! and certain passages I find hit straight to my bones and for your deep knowledge and empathy towards life and what a beautiful positive woman you are...........NOW and FOREVER!

    "I am a veteran now." ..me too

    "I have mostly learned to take one day at a time"
    .....trying too, but still grieving over my losses...

    "I enjoy doing and throw all caution to the wind and do it."
    ....pay for it sooner or later!

    "I then suffer for it not in body and mind. Then in my mind.Because the things I left behind that needed done the noticeable things nag at my mind and so my inner peace is disturbed."
    ....oh how can I ever relate!

    "But I am positive and happy most often.
    I find joy in simple quiet peaceful things."
    ..I have found I *can* get there some days!

    "I may get a phone call from time to time.
    But usually only from the same friend."
    ...I feel this statement all to well!

    "At first friends wanted to know the diagnoses .
    Then they wanted to give me advise on how to heal my self. Then many decided they did all they could and continued on with their busy lives."
    ...my own father a doctor who flew to "make me well", left after 3 weeks claiming "his golf clubs were rusting!"


    "These girls are hero's in the eyes of others.
    I feel for them they are truly suffering.
    They never knew real illness until these problems arose."
    ...on the same page! I almost was hoping for a "bad" diagnoses so I would have a *REAL* illness for others to believe.

    "They are real troopers."
    ....YOU ARE EVEN MORE OF A TROOPER! YOU are doing it!

    "These girls are getting attention daily."
    ...you must learn ..."me my mine!" A technique that Beautifulsimplicity and I do! Do your own attention to yourself! DAILY!

    "It made me so mad that I drove my self harder on tons of caffeine."
    Me my mine! Do not hurt yourself purposely!

    "She is invited to stay in nice places with friends and to go to other events she often finds the energy to go.
    Vacations are planned for her by others she needs to get away to the beach so they take her to a big beach house on both the west and east coast."
    ....Come with me I will make you well..all you need is a 2 week vacation and it will all melt away....LOL! PLEASE Doesn't someone get it?

    "The other girl will heal and live a long life."
    ...and so will you my dear sweet Beans...so will you. Different but a long life and you will suffer as we all do but YOU are stronger than ANYONE out there!

    "She told another friend said she wanted to be treated as normal."
    CONNECTION and bingo!!!! I think this is something we all crave and yearn for...to be recognized as NORMAL!

    "I could use the extra food on bad days." ME TOO!

    "I am strong I am surviving.
    I am not wanting to sound jealous."......you are a SURVIVOR!!!!!!
    Stepping out on a limb here...I am most envious of TV commercials and my neighbors and old friends: living beautiful people going shopping and jumping up and down laughing trying on make-up walking hugging there new boyfriend with that fresh clean hair washed with new scented bla bla product....without a care in the world....(like I was before) and completely oblivious to a disease such as ours that is out there and *could* strike them for all we know....but they keep dancing and using there swiffers and jet mops and living and laughing while our invisible sadness is lingering for our profound loss.

    "It just seems inside of me it hurts.
    I have been in need so often.".... We are HERE for you.

    "I send cards and call them.
    They rarely take my call.
    I know how to struggle .".... This makes me well up with tears!It happened/happens to me too.

    "And she might think of me and know that I tried to reach out to her. I have sent card and left messages on her machine to call if she needs a friend to talk to ."
    Please reach out and talk to us...WE understand you ...WE know the trials and tribulations...YOU ARE ACKNOWLEDGED HERE!

    "I would love for one of these women friends to do the same for me.".....losing MY BEST friend to this illness through an email no less. I *can* relate.

    "But my slow life of Chronic Fatigue is not some thing for others to brag about and talk about."
    .....I UNDERSTAND THIS SO WELL....(tears)

    I am a life commitment be my loving friend for life.
    ....you have MANY here in this forum who will commit to being your loving friends for life!

    Beans I hope you plan to write more...if not here(hopefully!?)in your own journal...your words and skills for expressing yourself are priceless to those who feel alone....they are golden and full of truth. Write, my friend, write and share your journey...we are all on the same path or have been there or will go through this....share and be loved and embraced.
    Today you have been embraced by me and your struggle...

    I would love to share your writing with my private support group with your permission and possibly include it in a journal and book that Beautifulsimplicity and I are planning, also of course with your permission.

    It is too beautiful to not share with all of those who feel this way.

    I am getting better day by day little by little....some days the success is too small to see...but I am climbing that mountain...and we will reach the top.
    It may take a little while, but we will rest and enjoy it and take it all in, once we are there.

    Warmest and the most gentle and loving hugs to you Beans

    What a inspiration you have been for me today.
    Blessings to you!

    Lilladybug

    "She dies. It makes for a good cry a good movie.
    It makes Romance in a strange sorta way."

    PS. I hope Ellice/Beautifulsimplicity can get on here and post about her interpretation of "ME MY MINE!" I have used it for about 3-4 years. It is something I have been successful with some days with and some days not so....it is a great lesson to learn and pass along to others and to this board!



  5. karen2002

    karen2002 New Member

    Heroism isn't measured by the attention is garners.
    Heroism isn't measured by the size or gravity of the feat.

    Heroes meet the problem head on, and resolve to endure, perservere, and courageously excel in the face of adversity.

    My dear girl, you are a hero each and every day! Especially in our eyes--we know the selfless feats you accomplish every waking day.

    Karen

  6. kadywill

    kadywill New Member

    a long response and deleted it. Nothing I say could compare to or add to what you've said. You are valued and you are a hero and I treasure what you've shared with us.
    With love,
    Kady
  7. pepper

    pepper New Member

    You expressed my feelings so eloquently. You have a wonderful gift - it has moved me to tears because I relate so exactly. (((HUGS)))Pepper
  8. lilladybug

    lilladybug New Member

    Beans...along with Sunny

    I would love to share your writing with my private support group with your permission and possibly include it in a journal and book that Beautifulsimplicity and I are planning, also of course with your permission.

    Again thank you for your insight!

    hugs!
    Lilladybug!
  9. DebinMN

    DebinMN New Member

    Beans, you said it all. Thank you.
  10. roro

    roro New Member

    I can relate. The thing that hurts the most is when my mom says "theres nothing wrong with you, its all i your head" or "whats wrong with you this week, every week its somethign new"
  11. montana

    montana New Member

    You have put into words what so many of us feel daily. I to have lost my job, my social life, my friends, my role in my family and my ability to rely on my body to function properly. Most people think CFS/FMS/MPS etc. are just hormanal, hysterical women who just want to complain. If people can't see anything wrong with you, therfore their preseption is nothing is wrong with you. IE: the judge at my ssdi hearing laughed in my face and asked me if I wore diapers!! when I told him I Had IBS and could not control my BM's or the incontaince i suffer from. Intresting fact: He through out all my treating doc's reports for the 3 years she treated me for the above. How convienant.

    Your post was absoulty great and summed up so many feelings we all have.

    YOU ARE MY HERO

    montana
  12. Sandyz

    Sandyz New Member

    That was so beautifully written. If your not a writer, you should be one. Its exactly how I feel also, but my fiberfog won`t let me quite express it.

    Please share with us some more of your writing.
  13. beans

    beans New Member

    Thank you for all the up building comments.

    I have thought and pondered over the things written before answering you.

    I have mixed feelings about what I wrote earlier.

    And I am a bit overwhelmed .

    I am not easy about sharing my deepest thoughts with strangers and my words or writing being quoted .

    Some thing about it scares me. I will have to analyze that on a better day.

    In a way even though I felt free enough to share my words with you there is some thing holding me back from sharing them more fully.

    At the same time I do not want to make any one unhappy on this support group by asking that you do not use my words on private support groups or it in journals and books or newspapers to be shared with others.

    But at this time I have to ask you not to use my words.

    If I were to make my thoughts available to others I would need to rethink what I wrote and write it better.

    Also I am afraid of being misquoted or misunderstood.

    If I had cancer and read my own words they might make me angry.

    I have been quoted in a book about another topic that is now Public any one can buy the book.
    It used my name and address and but the article that was used were had my very words.

    I had written an article a few years ago and was asked if it could be used in a book and when the article was sent back to me it was rewritten.

    I thought if I ignore the request for my permission to use my writing that they would not use it and instead they used my name and rewrote what I wrote, falsely representing me.

    I would avoid writing about others. I feel a bit guilty writing about my other friends suffering.

    It was hastily done before.

    Even so I would rather have CFS then terminal cancer.

    When I found out my friend had terminal cancer I deeply cried for her and I said that I wish it had been me and not her.
    Because I had struggled for so long.
    But I know now that I am glad I am going live many more years even with the struggle.

    Sorry but the words were more for me than for others to make my self feel better by releasing these feelings I had and could not share with any one.

    And maybe some day I will write my own book.
    Who knows.

    Beans