Caring for someone with Fibromyalgia & Chronic Fatigue Syndrome

Discussion in 'Caregivers' started by dc4him, Aug 18, 2002.

  1. dc4him

    dc4him New Member

    Hi My name is Doug and my wife Renita has Fibro and CFS. Can anyone give me some tips on being a care giver at times feel very cheated and I'm sure it shows I Love my wife very much and want to offer my help and support. But at times it is hard. Looking for advice Thanks
  2. Jackie F

    Jackie F New Member

    You have every right to feel cheated, you are being cheated!
    But what is she doing for herself?
    Have you discussed what is really important to you both?
    We found this very helpful. So many things we each thought were very important to the other; turned out to be unimportant to either of us. This made some big changes in how and what we do/did.

    It is crutial for her to get some support outside of the house/family as well. I hope she is visiting our support/message board. It is hard to help someone who doesn't know how to help themselves and that is what we specialize in. Teaching patients to help themselves.

    Have you sent for the Free patient's guide to FMS/CFIDS? It has loads of great info and is great for educating family & friends.

    Now, what really works well is to 'find' all the simple things that make her really happy. Then incorporate as many into her daily life as you are able to. Laughter is the greatest pain reliever of all time.

    It is different for all pts, but the theory works for all.
    I have both FMS/CFIDS and a whole lot more.
    Nothing makes me feel better than pure laughter. I enjoy stupid mindless movies that I can simply enjoy without any thinking.
    I have numerous photos all around, in every room of my house and they are all places or people that I dearly love.
    Sometimes when I can barely move, simply looking at them and recalling the fun time--will help ease my aches & pains so much better.

    Understand that she is confused and frustrated, as are you.

    I am a firm beleiever that we, the pts, need to stop focusing so much on ourselves and work at helping others. This has ben shown to be helpful for many. Very few are ready to simply run out to help others when they are so ill. BUT we must feel needed and helpful and should be a goal for us.

    Remember she is not her illness and help her understand that too.

    I hope you will visit our library and read up on these illnesses and some coping tips/skills that are offered there. This site has the largest library and it is chock full of great helpful info.

    BTW the best way to order the pamphlet/patient's guide is by clicking on the mid section here: Message boards--then click on either Fibromyalgia or Chronic Fatigue Immune and click on the first post of each page or just one, is all that is necessary.
    This site also offers a Free E-Bulletin that is full of the latest research data. You can sign up for it as well.

    Best wishes to you!

    Jackie F
  3. Carina

    Carina New Member

    You are to be commended for your caring. I have FM and CMP. what I found to be the very most help is to participate in a support group, laughter and regular gentle stretching exercises.

    Having this diagnosis requires a grieving process of the lost quality of life. It also requires that we find a new purpose in life. we can either choose to be defeated or find something we can do that gives us a sense of empowerment. We need to build a new kind of life for ourselves. This is how we feel that we have value, something everyone desires.

    She may only be able to clean out a drawer one week, fix a bowl of jello the next. Simple things. As time goes on, with the support of others in the same boat, the little things wil gradually get to be bigger things. Confidence and self-worth grow. Many of us will never be close to how we once were, the important thing is that we do something to move forward when possible.

    As she becomes more able to help herself your load may lighten.In the meantime, I agree, you need someone to come in and help you.
    You may think about setting aside a couple of hours once or twice a week for yoursef to get out of the house just for you to take a break from it all. If she finds friends in a support group, she may welcome this time to herself.

    God bless you,

    [This Message was Edited on 09/21/2003]
  4. hope2001

    hope2001 New Member

    Letter to our Family and Friends 03/16/04 10:09 AM

    I am 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 sometimes, 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 and that even though I can't be safe on the inside (physically) at least I can feel like 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, because life is so fragile.

    I NEED TO FEEL CARED FOR when I am feeling sick and everything is hard to do, even buttoning a shirt or brushing my teeth 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 "I AM GOING TO run errands for you, so what do you need"? or "You sit down and we'll continue talking after I do a quick run with the vacume or pop a load into the washing machine".
    I feel guilty when I can't do the day to day inconsequential details that are the glue holding the household intact.

    I NEED TO FEEL RESPONSIBLE I know what the latest research is, and I am on the internet about an hour a day trying to find out more, please don't tell me you heard Vitamin b-12 might cure me, don't you think I have tried all the miracle cures and read all the women's magazine articles and don't you know how disappointed I get with myself and 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 and I know it is 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 all 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 the manicurist after lunch with the girls. I WISH I had the energy to even have a manicure, let alone waste precious energy on such frivolous pursuits as gossip over drinks at the club and judging other women's clothes and homes and accomplishments.

    I NEED TO FEEL AFFIRMED. You wouldn't believe how many people scoff at you because you 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 even 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 (at that time) 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, so they forget about me, or just don't even invite me, because they think I probably can't participate. It is LONELY being ill over a longterm.

    I NEED TO BE ENCOURAGED Sometimes the thought of being sick like this for the rest of my life is overwhelming and induces short-term panic. It sometimes seems like a life not worth living, because the quality is so poor, so much of the time. I am a christian and I have great faith, but it can get overwhelming, especially when people imply that "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 am gone and if I am making any sort of impact on the world at all that will validate my life. REALITY looms large and can feel ominous. It seems like I am being 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 CARED FOR I just got an email to a group of us asking us to all get together and get a nice meal up for someone becaues 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 anyone brought a meal 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. And our families suffer too, and would like a warm meal, as much as the mom 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 a housekeeper that wasn't reliable, is infuriating sometimes, especially when they think 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 really 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 two 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 very 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, but 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 is 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 weights around your ankles every day and trying to walk through knee deep water, this is what it really feels like. Everything I do 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 am not going to doctor after doctor and struggling to survive for attention. Believe me, if I wanted attention, I am bright and capable enough to get it in other ways. I would rather be noticed for my good qualities and accomplishments. Even if I were getting attention, which I am not, it certainly wouldn't be 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, that 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 least we will have done something.

  5. luvdale3

    luvdale3 New Member

    im new to the board, my husband has fibro and i to at
    times feel cheated. i love him very much he's my soul mate.
    our children are gone and married off and we should be able
    to enjoy our selfs but thats not the case. i feel
    like i could kick myself when i have these feelings cause of
    the hard times that he is having. i know how you all feel.

    [This Message was Edited on 04/16/2004]
  6. afeni

    afeni New Member

    Its so great that you could come here for advice. So many have loved ones who won't. I have fm, and I have a daughter with fm. I find myself in both positions. I have a husband and other children besides.

    Its a hard road sometimes and hope said alot. Its how I feel. I try to see my husbands point of view, and to understand his frustrations, even though I have my own.
    But I never forget the love we share. I never forget that though many spouses leave, because they just can't handle things, he tells me all the time he ain't going nowhere.

    Justkeep loving and supporting her. And don't be afraid to take the journey with her. It can be a lonely place. And be honest. If it sucks, it sucks. For me, its hrder to take when no words are spoken. My feelings are no more important than his.
  7. hoobert

    hoobert New Member

    What's Happenin'!
    Beleive me it's tough, My wife also has fibro. You need to step back and take a deep breath. No matter what your beleifs are in this world, we all look up to Someone for help beyond ourselves. First of all, thank Him for giving you a wonderful woman and everything around you.

    I beleive He's teaching us to deal with hard things in life in His way. Like myself, you're blessed with a good and wonderful woman. It's tough for me too, but I wouldn't trade it (or her) for anything in this world.

    Sometimes MY wife's illness gets to be a pain in the you know what, and I seriously sometimes don't think I can do this, but then I take a look around and see how blessed I really am. I see other people around me and I feel sorry for THEM, because this world is full of takers, and we, my friend are the GIVERS in this world. I think we are being taught patience, compassion and the REAL things that make you a real man.

    I don't know what your life was like before you've been placed in this situation, but we all THINK we know how to have these qualities until we actually have to practice them on a daily basis. If the shoe were on the other foot and you had a debilitating disease, she would probably be right there for you too.

    Take a breather once in a while, some time out for yourself. Talk to her, she will understand. Remember that SHE is not this disease, she did not ask for it. If she could change it, she would. Good luck with everything and God Bless You.


    [This Message was Edited on 05/17/2004]
  8. naturebaby

    naturebaby New Member

    ...I just want to say thank you to all of you. I am amazed by your love and compassion in dealing with this DD.

    Many of us have a fear of abandonment because we are not the same person we were. You are all wonderful for hanging in and fighting the good fight with us!

    Make sure to take time for yourselves, and don't let this DD define your lives.

    Wishing you well,
  9. ladybird1

    ladybird1 New Member

    I have fibro & OA for sure, possibly RA and have
    been the primary caregiver for my 83 year old mother
    who had a stroke and left her immobilized on the left side
    with double incontinence.
    Also I work full-time.
    I can feel your pain.
  10. PVLady

    PVLady New Member

    Bless you for the good person you are! Your dear mother is so fortunate to have you. You cannot imagine how many elderly people are completely abandoned by their families.

    We rescued a 87 year old blind lady about five years ago. Her only child, a daughter 3 yrs older than me, just moved out of the state and did not even tell her.

    We found her in her house sitting at a card table, blind, no food, no medicine, and had not changed clothes for years
    It hurt too much because of severe arthritis.

    Even the people at the "assisted living" had tears when they saw her. As we were checking her in, they brought her a food tray and she practically inhaled it.

    I believe my friend received a Christmas card with the news. When we finally got her to an "assisted living" place, she was so malnourished and sick.

    It has been a long road back, with ups and downs, but she is doing well. She now has full time cargivers at the "assisted living". She may not have long for this world but she is safe, clean, and well fed - also very alert.

    She follows all sports games, and conversations. She laughs alot and sings. A blessing to know. I love her.

    Sorry for my rambling, but you made me think of our special lady.