THIS IS FOR EVERYONE ON THIS BOARD

Discussion in 'Fibromyalgia Main Forum' started by fibrorebel, Apr 29, 2003.

  1. fibrorebel

    fibrorebel New Member

    As we all approach tomorrow, and whatever that may bring, I wanted to share with you all something that came to me this evening. My son was reading the definition of a "hero" to his brother and boy did something ever just plow into me!
    The definition is "someone of distinguished courage, admired for their bravery", so now do you see what I'm gettingto??? No matter what we feel like or are told we are or the lengths we have to go to to get some validation- we are not a bunch of losers or wastes of space, WE ARE HERO'S!! Many of us are really having a tough time right now, physically, mentally, and emotionally. The board is full of need and needs being met. Do you ever notice how sometimes it is the member that is having the toughest flare that is the first to answer someone's need? No matter what age, what gender, what religion, or race, or personality type...there is such a powerful force of community here!!! I love you all and challenge each and everyone of you to remind yourself daily of the courage you all expose when reaching out to folks you have never seen, and the bravery you expose when you have a hurt or need and reach out to people you have never seen. Just remember you are a hero and a survivor.Love to all, Rebel
  2. skychomper

    skychomper Member

    word up fibrorebel!

    you are so right on with this post!

    -skychomps
  3. Bacci

    Bacci New Member

    Hey there!
    I have had CFIDS for about five years now and haven't worked for the last two. For the first three I had to struggle every day to get myself out of bed to go to school to get my degree in physical therapy. I wore myself out so much from that effort, that even though I graduated and passed boards, I only was able to practice PT for three weeks. I often feel dejected about all that I lost and what I still don't have--kids, husband, independence, etc. However, I have come to the point now that I feel quite proud of myself for accomplishing what I did when I was ill. I am also proud of all the friends I made and that alone was worth 3 years of H... in school. Our definition of heroes may be different for each one of us but I agree with you as far as seeing it in each other and what we are able to accomplish every day with all our limitations. Like you (I read your bio), I find simple pleasures to be the most joyful--gardening the five or six flower pots I have, cooking meals with fresh fruits and veggies and being with my friends and family (I live with my parents). I also love animals, but lost both cats last year. I sure miss their company and someday I hope to have more.

    I just wanted to thank you for sending along your words--I just started doing this website about ten days ago and I love it. I sure appreciate hearing about everyone, getting ideas for treatment and the general support that comes so freely from most people out there.

    Cheers to you for your message!
    Bacci
  4. gritman

    gritman New Member

    this is so true. You express yourself soooo... well and are very thoughtful for bringing this up. It takes a lot of courage and a bunch of personal insight to fight the big fight that we all are faced with. It is a tough road to hoe against an increasingly resistent medical community that wants to group us as a bunch of "whinners". It takes a strong personality and a quest for answers. And it is true that "knowledge is power". Someones answer to their regaining some of your former self lies within and in the strength of others and this site has been most helpful for many of us. You are correct, we are all survivors and let their be strength in our numbers.
    God bless you all.
    Hugs to all :)
    grit
  5. danisue22

    danisue22 New Member

    for your post . I'm very down today and your words were just what I needed to feel better. God Bless ..Danisue
  6. kalina

    kalina New Member

    Thanks for your post. I always try to remind myself that I'm probably a lot tougher than anyone I know on the outside of this board. Hey, we have to work as hard as we can just to get through the average day! Realize that you should be proud of yourself for fighting so hard, and keep your chin up!

    Kalina
  7. Sissy123

    Sissy123 New Member

    Your words hit home today. I am having a really bad day. I cant remember anything and feel like my brain is being squeezed and phasing out. I am so down about my concentration. I use to be athletic, a tech advisor for a hair care co, and I went to school to become a business tech, but lasted only 1 1/2 months after finally getting through school.
    I am now on disability and trying my best to live my life, but I keep forgetting things people have told me or I have told them. I was even told by my daughter that I never do what I say I am going to. That hurt, but I brought her to this site and showed to her the many people who are suffering just like myself. I cant tell you in words just how good it feels to be with others that are going through the same things.
    I try so hard to be a good mother and wife and many times my health lets us all down. My heart is breaking right now for all of us. I am so very tired of the wrenching pain and weakness, migraines that last for days, burning, numbness, nausea...
    I am dissappointed that my life has wasted away to this point. I was so full of life, now I am so limited, but stronger than ever. I do notice that little things do not bother me any longer. I take the lirrle things and hold on to them now. I saw a bunch of violets today and wondered what a miricle it is to be in the presence of such a delicate and fragrant flower. I can handle bigger problems with ease now. After dealing with such great pain for so many years I see the very importance of life and what is important period.
    My family and I have been through a great deal dealing with my pain and we are so strong because of it. They for the most part know my pain as their own. They remember I must have a comfortable place to sit when we have gatherings, but when we have outings that I push myself to great pain to keep up with them.
    Sometimes they get frustrated right along with me and at other times they are just plain frustrated that the old me that use to do flips in the house and hit my ankle on the wood stove is not around anymore. But we at least have the memories to laugh at. I have found laughter in great abundance in my home when I am at my worst. My family which is a bunch of comedians, except my daughter at times, {which I think is having symptoms of this DD also}I can laugh even while in alot of pain. They make me feel better. I taught them this. Humor. My father taught me that. I have carried it on even in the face of this demon and I will not give it up.
    I care for my grandchildren when I feel bad to help take my mind off of it. Afterall, they need taken care of when they are so little and they bring me such joy. I am strong and so are they.
    I think anyone who lives with fibro/cfs is a hero. We are all in this together and the fact that we are still alive proves it. We will not give up and we will be heard. Someday the future fibro/cfs sufferers will benefit from our refusal to be ignored. That in itself makes us heros. We most certainly are heros, to the greatest sense of the word.
    Thank you for your kind and encouraging words. I really needed to hear them right now. Sis
    [This Message was Edited on 04/30/2003]
  8. Betsy2

    Betsy2 New Member

    Thank you, Rebel. That is so good to hear. I for one need to be commended for my bravery once in a while. My boyfriend tells me what a courageous woman I am occasionally and it does my self esteem a world of good. It helps to hear positives such as your post here.
  9. jackiec

    jackiec New Member

    You write so well. Thank you for the lovely words to remind us of our strengths and continuing abilities. I like your positive thinking. Hugs!
  10. fibrorebel

    fibrorebel New Member

    that you all understand the point I was fighting fog to get across. The truth is we may not be exactly the way we were, but sometimes I truly think we are maybe better. Please, don't throw those tomatoes,yet! This D.D. has given me an opportunity to do some real self-discovery, and that is something I RAN from before the illness. They say that folks that find out they are terminally ill live better
    in whatever time they have than they ever did. I think most of us has learned to really search out what is important to us and we are fortunate that we are not terminal, we can use these tools of weighing out what is important for the rest of our lives. On the tough days we hang tough together, and on the better days we rejoice together. I am so grateful to be amongst the strongest,
    bravest, and the most loving group. The world is hard
    and we will have tribulations...but finding joy within ourselves and each other will see us through.

    love Rebel
  11. Sandyz

    Sandyz New Member

    I really couldn`t agree more with your post. We are a courages, strong bunch of people. What could be harder then this? Not many things that`s for sure.

    I also feel the day is coming when the world will know what Fm really is. They will realize how really ill we all "REALLY" were and they will apologize and feel terrible for the way we were treated for so long.

    I am hopeful that someday there will be relief for us and anwsers to this puzzling illness. All the latest things coming out of Fm research sound very promising.
    [This Message was Edited on 04/30/2003]
  12. friendtoo

    friendtoo New Member

    This is my first time here. I went to your message first and it brought tears and warmth to my heart. Thank you. It was just what I needed today. I am having a very bad pain day. I have been diagnosed with Fibro and CFS for 5 years now. I get the run around from my doctor who at first strung me out on 200mg of morphine. After my own research of how addicting the drug could be I am down to 75mg a day. This is a hard day. I have been attending special swim classes for joint movement and started some aquafit too. I am trying to do it for three times a week. Today I am in such horrific pain, it is discouraging. I have been doing this for six months or so, and I feel if I get my body stronger I wil;l feel better. Is this not right. Why does everyday seem to be such a struggle, and when I have good days I expend all my energy trying to make my son happy and have fun with him. It seems by the time he gets home from school I wish I could just sleep, I feel horrible, so I try to do as much as I can. I feel that he can see the fake smile I put on trying to enjoy our fun, but really feeling like crap. Am I not doing the right thing by building my strength? It seems though it helps sometimes and gives me more energy but for the most it wears me right down. At home it is just my son (10yearsold) and myself. I own a house that I push myself everyweek to keep clean.... I have a lawyer who is trying to get me back to work (long story about that), but to be honest I do not know if I am capable of working fulltime, even parttime? I have a great career that I really miss, and I am further away from social activities then ever before so I always think I should go back, its very hard for me to accept that maybe I can not. Also how will we survive financially? I am scared, and don't know what is the right thing any more. I have seen a homepathic person but I can not afford to keep up the visits or the herbs...Also I am so confused so many articles say take this, or take that, I don't know what is right or wrong. I also feel I can barely eat anything, I do but all the same things because I know it doesnot react to badly. According to my homepathic person I should only eat millet, seaweed...How can you eat these horrible things? Does anyone feel like I do, I feel so alone. I am also tired of people asking me why I am not working, or when will I get back to work, they just don't understand, and yet someof them know my whole story from the first reason I left work. I have lost so many friends through this, and the ones that have stuck around I rarely see. I try to keep busy, but I am not happy.

    Your message made me see that we are all fighters and I needed to be reminded that people out there do care, I thank you so much for your message.

    confused...
  13. loopyloo

    loopyloo New Member

    Hi Rebel and sissy
    your post made me cry as i am having a hard time with doctors and nurses and disability ect i have been signed of work with stress so it doesnt take much to make me cry at the moment but i am so fed up with the way poeple treat you especially when you cant remember things and it seems if you look alright people dont believe you are ill and in pain, thankyou for your kind words after trying to cope with a very rude receptionist at the doctors today you cheered me up

    big hugs from Loopyloo xx
  14. fibrorebel

    fibrorebel New Member

    So glad that you have found us!!! These D.D.'s are very complex and it helps so much to take small steps and one day at a time. I have a rule- I no longer attempt to cross bridges I haven't come to yet. Visit this board often, it is packed with good info, lots of love and understanding.
    There is certainly strength in numbers and the knowledge that we are not alone. Again welcome!!! love, Rebel

























  15. jamedw1

    jamedw1 New Member

    is someone who is afraid, and perseveres anyway...

    so, that makes each and every one of you heros...

    maybe not by choice, but by, perhaps, some devine design...

    keep faith... it may be all everyone has, but something good is coming soon... i pray for it every day...

    besides, God usually saves the best for last... :)

    G H and the such...
  16. granmakitty12

    granmakitty12 New Member

    Just read your post and it makes me feel a little better about myself. I had an especially challenging week-end with social issues. Also, I have had excruciating pain in my knees, ankles, and hips the last two weeks. I just dread going to wal-mart or even going over to post office to get the mail. People are always asking me where are you working now or what are you doing? I am always trying to explain myself.
    I know God has burdened me with this disease for some reason; but just can't get used to the way people treat me.
    Thank the Lord for this wonderful message board and under-
    standing people that come here. Granmakitty
  17. Takesha

    Takesha New Member

    THANK YOU.
    I have been thinking about how I "feel" knowing that I have fms and what lays ahead. I thought also about sharing a bit of my story with everyone. Maybe now is a good time for doing that.
    My mom became mentally ill when I was 3 and was institutionzlized for trying to kill me. The man I knew as my father was an alcoholic. I lived in 18 differnt homes before becoming a ward of the state at 11 years of age.My father loaded me into a car, took me to the orphanage and told them "take her I don't want her anymore." They wouldn't take me but 2 weeks later a case worker showed up and I loaded my clothes into a cardboard box I kept under my bed for just that purpose and off I went. I gave birth to two children before I was 15 and was forced to give them up for adoption (they are both in my life now). My life was a nightmare. I dropped out of school and ran away because my foster father kept sticking his hands down my shirt and pants. Still, I remembered reading "I used to complain because I had no shoes, until I met a man who had no feet."
    I realized that no matter how bad it was...it could be worse! At 19 I married a man that was mentally abusive, divorced and remarried two years later. I went back to school and got my GED. After 13 years of marriage to my second husband, he was diagnosed with schizophrenia, but only after he held a gun to my head. He was 6'8 and weighed 300 lbs, and I would wake up at night with him standing over me...it was scary. I had to leave him, move to another state so he wouldn't hunt me down. 10 years ago I came to New Mexico to meet my first born daughter, she's wonderful. In 1996 I fell at work and injured my wrist, arm, neck. It is a permanent disability.I transfered from housekeeping to medical records and couldn't do the job because of my disability. My immediate supervisor told me " Your worthless" I tranfered again and finally in 2000 I had to quit because I couldn't even work as a receptionist in the radiology dept because of my injury.In August of 2000 I decided to go back to school and get my degree. On my first day of class I met the most wonderful person I have ever known. Michael has CFS among other things, but because he already has 3 degrees he dropped out of school and went to work to support me so I could get mine. I want to get my bachelors in social work and work with the disabled. This has been a dream of mine for as long as I can remember. He struggles with the pain and fatigue everyday and there have been many times I wish he would let me go back to work. A year ago I started having alot of pain, fatigue etc. I had to reduce my class load. Finally, Michael agreed I could go back to work part time because he found a testicular lump and we still haven't got the test back but at best we think he will have to have surgery. I applied and was hired for a part time position at a clinic nearby. After 3 days of 8 hour classes and orientation I experienced the worst pain, muscle spasms and fatigue I have ever known. I had to inform the clinic I could not take the job. The doctor has fianlly decided and diagnosed fms. My doctor who knows me personally (from working at the hospital) told me to file for SSI because he believes I'll never be able to work again. I am stunned. I wanted to have a good cry but for what? With all that I have learned in my life I know this to be true "Life is good,but some of the moments suck." I have told Michael a zillion times..."it's not what your able to do, but who you are that is important." Now it's time to believe in my own words. One of my girlfriends meaning well, told me to drop out of school and stay home and take care of myself. I thought that someday I may have to do that but not today. Michael and I tease each other alot,usually when he can't function I can and vise versa. We are perfectly matched he and I. Michael tells me about two men at the VA hospital, one is in a wheel chair, the other is bedridden. He see's the guy in the wheel chair pulling the guy in the bed around the hospital as they go to visit and cheer up others. I think Michael and I will be like that. Yes, I used to complain because I had no shoes until I met a man who had no feet.
    I have spent two days reading the messages on this board, I have cried, I have laughed, I have prayed. Success in life is not how many times we fall, but how many times we pick ourselves up and keep going. YOU ARE ALL HERO'S and Succesful. Thank you for letting me share.
    Takesha
  18. tansy

    tansy New Member

    We need reassurance sometimes that most of us are very courageous. Only those with true insight into these DDs can have any understanding as to what it takes the severely effected to get through daily essentials let alone go beyond that.

    I learnt photography, all aspects of it, against the odds. Yet within the class I made the most progress and could, had my condition allowed, have gone professional. Had loads of jobs and free lance work offered.

    Got into taking gig (live music & comedy) images in an environment that was completely alien to what I can normally tolerate. I used to play guitar and regularly performed with others in my younger days.

    Can't hold the camera for more than 1 minute at a time, have visual problems, no concentration, poor memory and a "loopy" brain +++.

    Some shots had to be taken during the first three numbers with no flash. Use a wheelchair so positioning very limited. Other photogrpahers would regularly block my view, more so after I got so much of my work published.

    Why did I manage this, well believe it or not my disability helped. This genre of photography required fast actions and every second is different. So the cognitive impairments etc I had learnt to adjust to gave me the edge. I have to work intuitively, once I'd learnt my craft, that helped too.

    Well things got worse and eventually almost all photography became near impossible, though would not give in completely. Used this time to envisage future work and how I would do it. Struggled for 2 years to learn the basics on a computer.

    Then I planned a project. When I started I was still in a real mess but this window let me complete the images, make prints and frame them.

    Result - they're on exhibition now and the feedback has been phenomenal. People who know my work and have seen them say they're better than ever.

    I'm sure so many others have similar stories to tell.

    By accepting the limitations of our DDs and working WITH them most of the time, we can do some things that add enrichment to our lives.

    Cheers

    Tansy
  19. Achy-shaky

    Achy-shaky New Member

    This is just what I needed this morning! I was having one of those down days and now feel like I can face anything. If it's ok with you, I'm going to add your "We are Heros" to my collection of uplifting things to help me when I'm down (my comfort box). It's so true that many of the ones having the worst time are the ones who are uplifting others so I'm hoping that you are doing ok today for you are a true hero.

    Thanks again and bless you for making us all feel like heros today.

    Love & Hugs,
    Shaky
  20. hope4ever

    hope4ever New Member

    Boy I signed on just in time...I needed that post as much as I need my meds. :)
    Been feeling down for awhile now.
    I have a new daughter-in-law that doesn't understand this DD, so thus goes this endless cycle to gain respect & understanding from a person of whom is part of my life not by My choice but by the choice of someone I love and understands completely as he knew me before and after!
    Thanks again for this HERO post!

    hope4ever