Coping with FMS as a family

Discussion in 'Fibromyalgia Main Forum' started by nicolefms, Mar 9, 2003.

  1. nicolefms

    nicolefms New Member

    Hello everyone!
    Thank you for your responses to my last message. Am taking it seriously and am trying to exercise now...

    Another question, though. How are you all coping with FMS? And how are your families?
    I really struggle getting to terms with all this and I feel guilty and a failure. Also, I don't want to burden anyone else.
    My fiance loves me and has accepted my illness, but why can't I? It's not the pain - I can cope with that. It's my feelings and my exhaustion that leave me depressed.
    Any suggestions??
  2. jeanderek

    jeanderek New Member

    In my case it took me along time to come to terms with the fact that I am just not the person that I use to be. I had feelings of worthlessness and hopelessness. I felt like I was not contributing to the house hold because I was unable to work and help pay the bills. I am now waiting for disability to either approve or deny so I can move on to the next step either way. I have a very understanding husband and thank God for that. It was'nt as easy with friends and family though. Getting them to understand what I am going through on a daily basis is more than they can comprehend. They always seemed to have a cure and as much as I love them and I know they mean well I just didn't want to hear it anymore. So finally I gave all of them the letter to normals and that helped. I have found more support from being on this message board that I have found anywhere else that i have been. I wish you all the best and things will get better. I finally just had realize that this is who I am if i could change it I WOULD and you have to learn to be happy with yourself that doesnt mean you have to stop trying to help yourself but be more reasonable about it. There will always be days that you can't go at it alone and I had to learn the hard way to accept peoples help when they offered because it was all to much for me to do. The world isnt going to stop turning if the dusting doesnt get done today. Somedays i love to get in the kitchen and cook huge meals and other days its sandwiches. I have to balance my energy between everything that HAS to be done instead of worry about things that I can do another day. That is what I have slowy had to learn to do. I have lost friends to this but the ones that are my true friends are still in my life and I thank God everyday for them. I wish you all the best.

  3. bejo

    bejo New Member

    Hi.It's the exhaustion and depression that are the hardest for me to cope with too.It seems that my family just ignores the fact that I feel like this.They don't ask how I feel or anything.I have gotten so much support on this site and on another one I go on.They help so much because they really know how you feel,and they truely care.It is hard to accept the limitations Fibro puts on you.I guess the only thing I can say is with time you learn to pace yourself and if possible lay down a few minutes when you get really tired.Even 10 minutes rest helps me.As you can see by this letter,depression is here again today.Sorry about that.Here's a hug ((())) for you. bejo
  4. jeanderek

    jeanderek New Member

    Thanks CrazyVickie, I do feel really bless esp with having a good husband at home that is considerate and will listen to me vent when I need to. I have managed to hold on to two really good friends who know that I can't get out and do the things like I use to do and I can't come and visit with them all the time. And like the letter to normals says they are my link to the outside world and they do come and visit me on good days and bad. I went through a period though where I was actually the one who was pushing them away. I had envy of thier life because they could get out and do the things that they wanted to do and I was stuck here in my apartment in pain, depressed and to exhausted most of the time to get dressed for the day. I finally realized that its no ones fault that I am sick its nothing that I did or anyone else did and I have learned to deal with that. That is not to say that I don't have days where I am mad at the world but they are few and far between now. Coping is one of the hardest things we have to do we can learn to deal with pain, exhaustion and every thing physical about this disease but the emotion part and the being lonely is far worse than the other sometimes. I am glad that I have this board because it gives us a voice where in the real world it seems we should be silent because of the fear of judgement. I wish you all the best in the world and know that your are loved and understood
    best wishes

  5. catgal

    catgal New Member

    Hi nicolefms~~A Warm Welcome to You. You've come to the right place to find incredible support, understanding, kindness, compassion, geniune care & concern, information, education, and the benefit of everyone's personal experiences.

    I am 53, soon to be 54, and have had FM/CFS since I was 15. I was born with life-threatening asthma/allergies and IBS. Though the years I picked up osteo/psoriatic/rheumatoid arthritis, and two years ago was diagnosed with advanced degenerative disc disease [ddd] with multiple back problems, a cluster of pinched nerves in my neck/shoulder area, and comprehensive nerve damage from the ddd.

    I've been a licensed psychotherapist for over 30 years and continue to work 3 days a week as I am my sole financial support. But, working is very hard on me, and even just the 3 days exhausts me and takes a miserable toll on my poor, wrecked body. However, I have no choice but to work.

    All of us can relate and have gone through what you are presently experiencing. The pain, aching, and multitude of other symptoms of FM/CFS drastically changes our lives, lifestyle, and self-concept. At some time or another, we all go through the stages of grief & loss from who we used to be to who we have become.

    Initially, we stay in a period of denial for a while unable to believe what has happened and is happening to our body. We don't want to have this invisible disease that steals our life and robs us of our vitality, energy, joy, activities, and sense of worth and self-esteem. We pray endlessly that it will just go away like a bad dream, but it doesn't. And we stay in a state of denial, shock, disbelief, and anger for a good while.

    And we are dismayed and distressed that, for the most part, the medical community is clueless, non-supportive, and treat us as though we are crazy rather than legitimately ill. And the fact that FM does not show up on tests, x-rays, or provide any medical evidence leads many health providers to believe there is no such thing as FM--that we are neurotics, or hypochrondriacs, or drug seekers, or crazy.

    Our friends don't understand why we have changed; or how we can be out and doing things one day--and too sick or exhausted to do anything the next day, or how we can look fine, but yet say we are in such pain, so tired, unable to participate, and feel miserable on the inside--yet they can't see any such ailment that could be so debilitating. Our family is the same way. Most never heard of Fibromyalgia and can't understand what is wrong with you; why tests come back negative, no concrete evidence that you have such a debilitating sickness, and it is so confusing to them how you can be up and about one day as though everything were normal....and then bedridden the next day. Or how can someone have so many things (symptoms) wrong with them--a new complaint everyday, and they just don't understand, can't comprehend it. If you had a broken arm, you'd get more comfort, support, understanding, and help from them for something that is going to be healed in a matter of weeks than you will get for a heartbreaking chronic illness that has no cure.

    And so the support, compassion, help, and understanding that we so desperately need from the people we thought would be the first to give it--sometimes just isn't there. That is why Boards like this came into existence, and these people who do understand, can relate, are going through the same things you are, and offer that support, caring, sharing, and personal experiences become our second family. Initially, unseen strangers from all over the globe who understand, care, support, and unconditionally accept you and believe you from the first moment you logged on.

    The most important thing we can do for ourselves is to educate ourselves, our friends, and family members as much as possible about our illnesses and how they affect our lives. We need to be believed! It is difficult enough for us to accept and deal with these diseases and what is happening to our bodies, our lives, our selves without friends and family thinking we are just lazy, slackers, mental cases, or shucking our responsibilities.

    But, educate your family and friends as much as they are willing to learn. Give them books, print outs from this Board, bring them to the Board and have them ask questions and read the posts, take them to your next doctor's appointment (if you have a supportive provider) and perhaps when they hear about FM officially from a physician it will help them to understand, to believe, and be more supportive.

    It is Wonderful that your Fiance accepts your illness and understands. Yet, it concerns you deeply that you cannot accept it and feel guilty and like a failure. Unfortunately, all of us have had to deal with those issues and get passed them so we could get on with taking care of ourselves, doing what we need to do, and having some quality of life.

    All of us can tell you from experience that acceptance does not mean giving up or giving in; or that you have nothing to feel guilty about--you didn't ask for this disease--you are not being punished by God, or that you are not a failure because you have a chronic illness. But, in the end, you have to work through these issues yourself--and we are here to help you along, and we understand what you are going through--we've been there; done that. But, it takes personal time, alot of self-processing, honesty, help, and soul-searching to get there. But we are here to help see you through it, to listen and understand the rage, anger, resistance, defiance, depression, tears, and silent screams--for eventually this too shall pass.

    Many of us have found getting the support services of a good therapist has been extremely comforting and helpful as we go through this. A good therapist can help guide you through the maze of emotions you will experience--especially the depression, frustration, anger, guilt, lifestyle changes, methods for coping with a chronic illness, stress management and relaxation techniques, helping to process and resolve personal issues, and they can provide you with a lifeline to help advocate for you, officially diagnose the depression, treat it, and provide medication if necessary. And they can help you to put things into perspective, and help empower your self-esteem and sense of self-worth. Plus seeing a therapist also helps to validate your illness which can be a tremendous asset should you ever decide to try for disability. If you aren't already seeing a therapist, I would highly recommend you ask for a referral from your doctor, or the best way to find a "good" therapist is by asking around--word of mouth from people who have had a positive experience with a particular therapist. Also, deciding whether you would be more comfortable with a famale or male therapist. And, when and if you call for an appointment--ask the therapist if they are knowledgeable about FM/CFS. For even though I am a thrapist, I see a female therapist from time to time to help me get a reality-check, get centered again, and get me back on track whenever things get overwhelming for me or traumatic issues come up that I need some guidance and support with. When I see her, I always leave with things back in perspective and a more positive attitude.

    This is an illness that we have to learn to accept, cope, and deal with. And there are many emotional and psychological stages we have to process through. We have to find "gratitude" again and be thankful that though we ache, hurt, and have limitations that it is not a terminal illness, but a chronic disease that can be treated, and with the right attitude learn to focus on what we can do rather than what we can't; learn to appreciate the good days, and learn to create and develop as much positive energy and inner strength as we can in order to function, take care of ourselves, nurture/pamper/and rejuvenate our inner resources, and live life as happy and best we can.

    Sorry this is so long, but I could feel your despair--we've all been there--and the sooner you start helping yourself rather than blaming'll discover you can live through this; that you are still a woman of value and self-worth with alot to offer to others. It is all a matter of choice and attitude. You can choose to feel like a hopeless, helpless, victim and a total failure in life--which is worse than the disease itself--or you can choose to make some thought and attitude adjustments and get on with your life, following your heart, realizing your dreams, making the most of your potential, and being the best YOU you know how to be.

    Having had FM since I was 15, I've changed alot of my thinking along the way and made numerous attitude adjustments. Though my body ached, sometimes wracked with pain, and there were days I could not get out of bed--I decided I wanted to live life to the fullest measure posible. I completed high school, went on to college, pursued a career and held down full time jobs till 1993, went to graduate school, became a psychotherapist, followed my dreams of living in the splendor of the Rocky Mountains, and even though I know I will pay for it tomorrow--I haven't missed out on too much in my life. I have been willing to pay the price to have a life.

    And I want that for you too. We sometimes see others on this Board--young people 18, 19, in their 20's--who talk about killing themselves, how worthless they are, that they just take up space, that their children or others would be better off if they were dead.....and this is so heartbreaking, so terribly unnecessary--yet these are the choices they've decided to make, the thoughts they've decided to think, and the attitude they've chosen to adopt.

    You have the love, support, and understanding of a good man; you have plans for marriage and a future; you have your whole life ahead of you. You have a chronic illness that will have good and bad days. Between misery and happiness>>>chose happiness and deal with the misery as it comes and goes.

    And we'll be here for you 24/7. You are not alone. You are a member of a very large family now with alot of knowledge, compassion, support, understanding, experiences, and good and bad days to share.

    Infact, here in Montana, it's been snowing and bitter cold for the past 7 days. We've got 6 feet of snow on the ground right now; it is still snowing heavily, the temp is 19 below, and this has been a painful, aching, bad day for me. But, I got to visit with my friends here on the Board; I got to share with you; my man just made a delicious looking pizza, and we're going to go have a pizza picnic on the bed and watch a movie. And I am grateful for the day, can't wait for that first bite of hot, homemade pizza, then to cuddle and watch a good movie, and I am looking forward to tomorrow even though I have to go to work in this beautiful but harsh weather, and my whole body feels like it ought to be in a cast.

    So, take care nicole, sorry this is so long, and I confess that it hurt to sit here this long and type it all out--but you were worth it. Best Wishes my dear, Carol...

  6. catgal

    catgal New Member

    ....Bump shoobedoo...BUMPBUMP...Bumpin the night away...BUMPBUMP...Bump shoobedoo...BUMPBUMP...Won't you come out and play...

    {Chorus} Ladadee...Ladeeda,
    Who Put the Ram in the Rama Lama Ding Dong