Discussion in 'Fibromyalgia Main Forum' started by hope2001, Mar 16, 2004.

  1. hope2001

    hope2001 New Member

    I’m not trying to speak for everyone, but from my own perspective I can tell you what I NEED from my family and friends and so seldom get.

    I NEED TO BE SHELTERED dropped off at the curb and told, don't try to do that, let me help you.... There is so much going on in my body that I have no control over and it does get overwhelming and exhausting to my body.

    I NEED TO FEEL PROTECTED even though I can't be safe on the inside at least I can feel if ANYONE or ANYBODY wants to "get at me" then they are going to have to "GO THROUGH" my protector.

    I NEED TO FEEL CHERISHED as if my family or friends feel they are blessed for each day we have together, LIFE IS SO FRAGILE.

    I NEED TO FEEL CARED FOR when I am feeling sick everything is hard to do, even dressing and I WOKE UP WITH ONLY 2 MILES OF ENERGY INSIDE OF ME AND A NORMAL DAY TAKES 25 MILES WORTH. I need someone else to say, "let me empty the dishwasher", or “so what do you need me to do?” I FEEL GUILTY when I can't do the daily inconsequential details that are the GLUE HOLDING THE HOUSEHOLD INTACT.

    I NEED TO FEEL RESPONSIBLE I know the latest research, I am on the internet each day to learn more, please don't say B-12 might cure me, I’ve tried the miracle cures and read the articles. DON’T YOU KNOW how DISAPPOINTED I GET WITH MY OWN BODY for NOT COOPERATING?

    I NEED TO FEEL FORGIVEN for NOT being a full person (in the world's view). You may not hold a grudge, I know it’s hard on you to pick up slack, but I don't FEEL FORGIVEN, I feel guilty.

    I NEED TO FEEL LIKE PART OF A TEAM working toward a common goal (our life together) and it is OK if my main contribution is SPIRIT.

    I NEED TO FEEL INCREDIBLE I get angry sometimes seeing a tennis mom sachet into lunch with the girls after a manicure. I WISH I had the energy to even have a manicure, let alone waste precious energy on such frivolous pursuits as gossip over lunch and judging other women's clothes and homes and accomplishments.

    I NEED TO FEEL AFFIRMED So many people scoff when I can't "Do just this one little activity, and it IS EXPECTED." I get tired of feeling guilty for not BEING ENOUGH to people that I don't care about in the first place. When I rant over the injustice of my illness, don't try to talk me out of it, or encourage me, just say "I KNOW, IT ISN'T FAIR, YOU DON'T DESERVE THIS"

    I NEED A FRIEND who is there for me on the good days and there for me on the bad days, too. I get left out of a lot, because I go for periods of time when I am unable to do much, they think I probably can't participate, so they forget about me, or just don't even invite me. It is LONELY being ill over a long term.

    I NEED TO BE ENCOURAGED The thought of being sick like this for the rest of my life INDUCES WAVES OF PANIC. It sometimes seems like a life not worth living, the quality is so poor so much of the time. I’m a Christian, I have great faith, but it can be overwhelming, especially when it’s implied "if your faith were greater, or if you would just DECIDE not to be sick....." We HAVE ALL TRIED THAT - it doesn't work.

    I NEED TO BE PRAYED FOR Frankly sometimes in the middle of the night when everyone is sleeping soundly and there are only the creaks of the house for company....I'm SCARED, REALLY SCARED. I wonder who will remember me when I’m gone and if I’m making any sort of impact on the world at all to validate my life. REALITY looms large and feels ominous. It seems like I’m PURSUED NIGHT AND DAY BY A STEALTHY UNSEEN STALKER, who knows my every move. It would feel wonderful to really believe I am actively prayed for.

    I NEED TO BE ANTICIPATED if I am sick in bed, know that I am dying inside, because I am neglecting things that need to be done, and the PRESSURE AND STRESS TO GET WELL is VERY GREAT because I know when I do get out of bed THERE WILL BE EVEN MORE RESPONSIBILITY WAITING FOR ME than BEFORE I wore myself down into a state of exhaustion and bedrest. Just come on over and SILENTLY DO SOMETHING/ ANYTHING, and don't even expect gratitude, I may not even realize, but when I get up a lighter load will be blessed.

    I NEED TO BE NURTURED I just got an email requesting a group of us to get a nice meal up for someone, because she is down with the flu, poor husband for taking care of her! I LIVE WITH THE FLU EVERYDAY OF MY LIFE! The last time a a meal was brought to us, was a year ago, after I had been extremely sick for 6 weeks. Before that it was years. No one even THINKS of reaching out to a chronically ill person, because they might be EXPECTED to do it monthly or because they are so used to you being sick, they don't even realize sick MEANS SICK. Our families suffer too, and would like a warm meal, as much as the lady who just had a baby or the woman with toe surgery.

    I NEED TO BE APPLAUDED give me CREDIT for being a SURVIVOR AND A THRIVER. TO KNOW that there are women out there who have never had more than a broken acrylic nail and an unreliable housekeeper, is infuriating sometimes, especially when it’s implied they must be better than me or I wouldn't be sick all the time and unorganized and uninvolved. I know we don't know what people's lives are like behind closed doors, but I would love, have prayed, to JUST BE SHALLOW FOR A DAY and take every STEP, BREATH AND ACTIVITY FOR GRANTED without deciding WHICH few things I could do today that will make a difference over the next 30 years (it is almost always be a good mom and wife).

    I NEED TO BE RESPECTED I am intelligent, I am attractive, I was once beautiful.... It is depressing to swell into a stranger because of meds and to have no clothes that fit attractively. I'm too tired to shop for them, and if I did shop for new clothes, I wouldn't have energy to wear them anywhere anyway. I CAN DO THINGS, I just can't prove it very often. I AM SOMEBODY not a disease, but the disease overshadows my chance TO BE MYSELF.

    I NEED TO FEEL NORMAL Sometimes it feels like a BOLT OF REALITY HITS ME, as if I JUST REALIZED I am not a healthy person for the very first time. It doesn't seem real or possible for a minute, almost shocking. I can't do everything, but sometimes it would be fun to just play with no worries. HELP ME ESCAPE for a few hours to a play or comedy club, somewhere different where no one knows and I can forget.

    I NEED MY DIGNITY It’s important for me, with so little control over anything else in my life, to at least have my dignity. Please DON'T SPECULATE ABOUT ME with other family members or friends and compare notes about my progress or lack of progress or determination or mindset, or your opinion of what I could, should or ought to be doing differently. It is easy to be smug when you aren't wearing lead ankle weights each day and trying to walk through neck deep water. This is what it really feels like. Everything is ten times harder for me than it is for you.
    I NEED TO FEEL ACCEPTED AND INCLUDED not like a project to be SCRUTINIZED for worthiness and validity. I’m not going to doctor after doctor and struggling to survive for ATTENTION. Believe me, if I wanted attention, I’m bright and capable enough to get it in other ways. I’d rather be noticed for my good qualities and accomplishments. Even if I were getting attention, which I’m not, it certainly isn’t worth all this seclusion and suffering. REALLY who WANTS to have medical tests run and spend travel money on medication?

    Not every day is like this, there are good days, and that is what makes the bad days even more depressing sometimes, because you realize what you are missing.
    DON’T TALK, JUST DO. Actions speak louder than words. You have the freedom to buy a plane ticket and go anywhere in the world and enjoy it. You can take a job, or join a club, or garden or take a hike or run in to a new shop or.............anything you decide to do on a whim. I have to think and plan and strategize. I am afraid to make plans because I really don't know if I will be able to follow through on them. Even planning takes energy, which may not leave enough energy for the actual doing. YOU PLAN SOMETHING and pull me along, with no responsibilities and NO GUILT if I can only do half of the plan...at least we will have done something.

    Brigett (Hope)

    [This Message was Edited on 04/03/2005]
  2. neen85

    neen85 New Member

    THANKS!!! It couldn't have been said better!! You are a wonderful writer!!! Daneen
  3. Xausted01

    Xausted01 New Member

    I am in tears right now. That was the most perfectly written thing concerning this DD that I have ever read!!!
  4. hope2001

    hope2001 New Member

    I have lived with this since junior high and it does get frustrating. I hope it does help your families to understand. My husband is wonderful (now). My first husband (deceased) was horrible and never supportive at all. He pushed and pushed for me to do more. It would be nice if some stars would come out campaigning for awareness of this illness, then maybe we could hold our heads up high.
  5. nikd

    nikd New Member

    I hear ya I printed the whole thing out, I also sat and cried as I read it .Great job.
  6. tandy

    tandy New Member

    I just want to say Hope, That i've read quite alot of poems,stories,letters,etc....wtitten about fibromyalgia........And this one really stands out! I think its perfect. I've had FM for over 12 yrs,and this is what I'd write ,IF I had the talent to write my thoughts on paper.(but I don't) So,Thank-you!!
    I hope you don't mind me printing this????
    have you put this on the writers forum? they'll love it!
    Hugs, :) Tandy
  7. WW68

    WW68 New Member

    Thank you for the bueatifully written letter(crying). I was coming here today to post, and read your letter. I could have not said it better myself...hugs WW68
  8. MemoryLane

    MemoryLane Member

    I think you have it all, but what it adds up to for me is total vulnerability! This applies to so many areas: physical, psychological, relationships.

    Thank you again for taking this time to tell us how you feel.

  9. Mar19

    Mar19 New Member

    Thank you, Hope. Your letter just makes me cry. I'm going thru so much right now, and I don't even have the 2 miles of energy you talked about in your letter. It hurts to be around people who just assume you're capable of 50 miles!

    Reading your letter was good for my spirit and soul. It's an affirmation to me. I'm not the only one who suffers not only with the disease, but with family and friends who just refuse to understand.

    I do have one dear friend (thank you, Lord) who is always there for me. I just got off the phone with her and feel a bit better.

    I think I'm going to copy this for my dh. Just maybe it'll impact him for at least an hour or two.

    Sorry, I'm rambling, aren't I? Ü Thanks again, Hope.

    Love and blessings
  10. ginlouking

    ginlouking New Member

    Hope...I applaud you!!! You have put words together in such a way that who could not be in tears upon reading it!!! You, my dear, have said it ALL and I want to thank you for it.

    Most of the time I just go about my little world and try not think about life outside it's walls. I cram my anguish in small crevices and then cover them with, "it will be alrights".

    I feel I am not a real person anymore. Not even a member of my family. I have a wonderful, supportive hubby but the rest of the family just kind of looks the other way.

    I feel like a big, pink elephant that everyone walks around but no one wants to talk about or even with. I miss so much and feel so alone most of the time.

    I thank God that we all have this web site and our internet family to help us cope. You all are great and keep me sane; or at least a faximile of sane.

    Thanks to one and all and may God bless us each and every one,
  11. Sandyz

    Sandyz New Member

    That says it all it felt so good to hear someone articulate all those feelings we have. I`ve got to print this out too and save it.

    Thanks again,
  12. beverly20024

    beverly20024 New Member

    Hope, I couldn't get through your letter without tears. Tears for the things I've lost, and the realization of the things I have. Thank you.

    Take care,
  13. kimkane

    kimkane New Member

    thank you, very well said. kim
  14. pj13

    pj13 New Member

    Once again, I would also like to thank you for the outstanding letter. You said it all! Luckily, I have a very supportive husband, and he's getting moreso everyday. However my kids don't understand. My teenage son has always been supportive when I've been sick with just a cold. I guess that's why it hurts so much more to hear from him, "Mom, why don't you think before you talk, or why don't you just spit it out....you're rambling on about nothing!" And my daughter who is almost 21 is so distracted with her boyfriend, college, work and finding her identity doesn't understand at all and won't let me talk with her about her life, much less what's going on with me, or why her Dad and I keep telling her we don't have any money (now that I can't work and am trying to get disability. And then, there's my Mom, who would always bring chicken soup when I had a cold, but now that I try to explain fibro...she thinks it's just a word my doctor made up. If I tell her I've had to be in bed all day, she starts to tell me how all her bones hurt too, and it's just because I'm getting older. She'll say "I can't get out of bed either" and in tbe next breath, she'll talk about how she has to go to tbe gym or to ceramics class or can't wait until the weather gets warmer, so she can garden.

    Thanks again,
  15. mfordham

    mfordham New Member


    Thanks for saying all of that. I wish I could convience my husband of all of those things. He doesn't accept me warts and all. He only has a limited amount of sympathy and I have to be careful what I say to him about how I am doing, because he can see it as whining and complaining.

  16. orhaniye

    orhaniye New Member

    Wow that was brilliant what a fantastic way you have of putting pen to paper, like others it has made me cry thank you so much for those words I have also printed it off and my husband is in the process of reading it now He is my rock nobody else trys or wants to understand this DD so we have to find our own way through it, it is lucky we have the internet and support groups as it so helps to meet peeps in the same boat to be honest it has kept my sanity.
    so once again Thank you.

    Love orhaniye
  17. missybellizzi

    missybellizzi New Member

    that was great!!!
  18. hope2001

    hope2001 New Member

    my mom has told me to breathe into a paper bag when I feel bad. I have been tested in all sorts of ways and even sleep study tested (they say I fall asleep within 3.25 minutes any time of day I lay down). People just can't believe that the debilitating fatigue isn't by choice.
    It's great to find other people who really understand the "trenches".
    Hang in there, you aren't alone.
    I am surprised to hear that I am not the only person with the family issues of disbelief out there. I guess my family isn't as dysfunctional as I thought it was.
    This message board sort of puts the "FUN" in dysFUNctional!

  19. mogal

    mogal New Member

    This is my first day on the massage board and I just finished reading your letter. It's WONDERFUL!
    I,like so many others, really appreciate it.
    Thank you for taking the time and energy to write it!

  20. hope2001

    hope2001 New Member

    That's great! This is a great board. Have you been diagnosed long?

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