How CFS/FMS Affect Our Sense of Self and Our Intimate Relationships

Discussion in 'Fibromyalgia Main Forum' started by krdavis, Jan 27, 2009.

  1. krdavis

    krdavis New Member

    Hello all,

    I am an assistant professor of communication, and I am working on a research project that examines how CFS and FMS influence our identities (sense of self) and our intimate relationships with family members. At this point, I am still working in the early stages of my project. I really want to give a voice to all who suffer from these devastating disorders. I too have CFS and FMS. Fortunately, I am not completely bedridden, but I have been in the past. I know how CFS especially has affected my identity. Before I finally found out what was wrong with me, I thought I was lazy, pathetic, irresponsible, etc. Those feelings can destroy one's self-worth! Anyway, I would love to hear from others. I would like to know how these disorders have affected the way you see yourself and feel about yourself. I'd also like to know how CFS & FMS have affected your relationships with spouses/partners, children, siblings, parents, extended family, friends, and the like.

    I would be forever grateful to hear from all of you. Thank you so much!

    Peace and Light,

  2. ironspine

    ironspine New Member

    Hi Kristin,
    Glad to see you are doing this, and that you are able to!
    I always feel like I'm being lazy and pathetic. I am one who can't stand to sit still if there's something that needs to be done. I had to quit working because of FMS; my boss was frankly a bitch. She kept questioning every little thing I did, taking away any self confidence I ever had. So, I quit. I had gone to school for my job (I'm a Master Florist) to earn my certificate, but it hangs on a wall, useless.
    I won't apply for any other job, because I don't know how I will feel on any given day.
    One day I am full of energy-but it is depleted by noon. Then I must rest and gear up for suppertime-I'm married with 2 kids (12 and 15), and suppertime is very busy, and I'm on my feet until 8 pm.
    I have had scoliosis with a rod put into my spine when I was 16 because the curvature was so severe. During the years following, I worked, and gradually got to the point where I started hurting in my back all the time. Then, I started aching like I had the flu occasionally. From then, the aching started lasting longer and got more intense to the point I needed Hydrocodone to make it through my day. I now take Lyrica which helps, along with Trazodone and Lexipro for anxiety and depression.
    My best friend of 20 years has basically dropped me off her radar. She told me she thought I was a hypochondriac; she knew something was wrong with me (in her words) but she doesn't believe in Fibro, because there's too many people that say they have it. Her doctor also told her that Fibro was just a name for people who had aches and pains.
    My family believes me-some understand it more than others. I live an hour away from most of them, and they can't understand why I won't drive an hour. Lyrica makes me dizzy and spacey; plus sitting that long and trying to pay attention to the road is hard.
    Now, I'm a stay-at-home mom. My husband farms, and told me I don't have to work. We're old-fashioned that way. I take care of the house, cook, take care of my son who has learning disabilities (this is a whole other can of worms!) and take care of yardwork when I can.
    Last week I had to lay around because I hurt terribly and was exhausted. This week I am trying to finish wall-papering my kitchen (resting occasionally).
    I hope my situation gives you some insight for your project. I hope to see you post again. Let us know how your project is going.
    You take care, also. I feel like all of us here are buddies!!!
  3. MsE

    MsE New Member

    CFS has been my companion since 1997--maybe before. It is just now that I can finally say my family "gets it." Perhaps the same can be said for me. No, that's not quite right.

    What I should have said is that I still go through periods of doubting myself. Am I really sick? If I just tried harder, couldn't I beat this? Is it all a habit of laziness? Am I "just" depressed? In fact, I've gone to two psychologists as well as my doctor to ask for their "take" on my emotional stability, etc. They were all quite outspoken: "You are not depressed. You are sick."

    Then I snap out of it, rest as needed, pop more supplements if I think they have a prayer of working, and get on with it. It is important to focus on what I can do, not on what I can't do. It is important to give myself more quiet time if I need it. It is important, however, to remain part of the world and not give in to the temptation of hiding out at home because it is such an effort to join the living. Of course, there have been long stretches when staying home was necessary; I didn't have an option. But when I can, I try to operate as normally as possible.

    I can't work anymore. Had to retire from teaching, though I went back to it at our local college on a part-time basis. But that only lasted for a short time. I couldn't deal with the stress. Dealing with stress is very difficult and it doesn't seem to matter a whole heck of a lot whether it is "good" stress or "bad" stress. Anything out of the ordinary can throw me into a flare, so my life is a quiet one for the most part.

    My relationship with all my children is very good. All I have to do is be completely honest with them. Pet phrases: "Can't today; ask me again in a couple of days." "I will if I can."
    "Don't hold your breath, but maybe." "Okay. Time for me to rest." "This is a good day."

    It's been a bit more difficult with one of my friends. In fact, with more than one of my friends. However, my best friend is very understanding. For instance, if we have planned to lunch together and I feel wobbly that morning, all I have to do is call and tell her to forget it." She totally understands.

    All in all having this illness has been a learning process. But then, that's what life is all about, isn't it?
  4. quanked

    quanked Member

    I am not sure that this is the place I would want to go into great depth about this. I will say that I am not who I was 20 years ago.

    I apparently picked up mono in 1989/1990 while I was in school. I was 38. I had worked very hard to get where I was at mentally through reading, therapy, and lots of work on my self. I was congenial, bright, energetic, dauntless, compassionate, caring, interested, passionate, a survivor and so much more. When I got into grad school a couple of years later I was unstoppable. When I got my master's degree I headed out to frontier Idaho and did just what I said I would do--work with the disenfranchised, poor, uneducated, etc. That was in in 1993. By 2000/2001 I was down and have not come back up.

    I waited for years to wake up one day and bounce back to the old me. Not sure when I realized I was not going to bounce back but somewhere along the way I let go of that hope. I am not sure who I am anymore. I sometimes cannot believe the thoughts that run through my mind. I am still grieving. I am trying to define who I have become. I am not sure I can. I went to a therapist a couple of years ago for help. I am not sure whether I could just not sit there and hear another woman tell me what I already new as I had just been working as a therpist a couple of years before that or if the techniques were just not useful for cfs/fm sufferers. I went twice. I needed more but I am not sure what I needed.

    These dd's have devastated my life. I do not have the energy to have relationships to any great degree. And my sense of self really does get in the way.

    Research into these issues may prove to be quite useful for future sufferers. Research results could provide mental health treatment providers with information to effectively assist cfs/fm patients. Heaven knows that there is not much out there for us now. There was a day when the notion of this project would have caused me great excitement. Good luck.
  5. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I used to say, "That would be the worst thing that could happen to me." I was active in a ministry that put me in touch with many different people. Some I met to help, others I met as partners in my ministry. Every once in a while, I would meet a woman who had vague symptoms: pain, fatigue, cognitive problems. These women would have horror stories of going from doctor to doctor to doctor in search of help.

    I loved to hike and canoe. I ran a business, did volunteer work and did recreation or home projects on the weekends. I loved having a full active life. So these women, who looked like they had to drag themselves just to get out of the house, had something that I knew would take away who I was, if I ever got something like that.

    But, I did come down with that. I had a year of a virus that came and went or many different viruses. I started having hormone problems that gradually got worse over the next three years. The symptoms started happening at all times of the month. I would be too tired to walk my dog on the weekend. I would go to church, and become so tired I would go to my car and sleep for fifteen minutes in the middle of the service. I figured I just was doing too much and stayed up too late. I was having hot flashes. I was forgetting things, just doing stupid things.

    Then, one day, I plummeted. The pain started. The fatigue was severe and unrelenting.

    I won't bore you with the rest of the journey. I am one of the fortunate ones who was diagnosed and started treatment within nine months of my plummet.

    My parents, sisters, church family and husband have never been suspicious that I was lazy. They all saw the big change in who I had become. So they knew I was really sick. My husband at first thought it was depression and he opposed my traveling three hours away to go to a doctor. We live in Birmingham, AL with a research hospital. He just couldn't believe I couldn't find a local doctor in this area. But I had gone through four. Two recognized what I had, but they said they didn't treat it. One said I had depression, but then he said I had low thyroid. The other one just didn't know but thought it was neurological. My husband never doubted that I was real sick though.

    Like all who have this illness, I went through a grieving process. It did not take long for me though. I found acceptance and put all my priority on getting well within a week. I cried because I knew I would never be able to go hiking or canoeing again. But I might be able to sit on the side of the river while others canoed, and that had its own pleasures. I found I did not have the life I planned or wanted, but I still could have an enjoyable life.

    I would spend hours on my recliner on the back porch. But I found peace in being surrounded by nature. I discovered two new species of flies, when they landed on me while I was resting. How many people have that privilege? I studied the shape of the leaves on the tree over my porch.

    I used to tell my 76 year old friend, who would complain about her limitations from getting old, "If you focus on what you can't do, you will miss out on the enjoyment of what you can do." Those words came back to haunt me at that time. And I grew to accept the new person I had become. I found joy in new experiences.

    The problem I have with my identity is the invisible friend I always have with me. Only I know this friend fully. I can describe him to other people. But they can never know what he is like. Only I know it fully because I am the only person that can see him. And he is always with me. Just as a hidden birthmark becomes part of the identity of a person and their sense of who they are, even though no one else can see it, this invisible friend has become part of my identity, even though no one else can know him like I do.

    So I feel that the person I am is not someone that others, even my husband can fully know. I am only known to myself. I don't announce my symptoms every day. I don't tell my symptoms when I meet someone new. I don't explain for twenty minutes when I didn't show up at an event. I explain to some. But no one can fully know.

    The Bible describes "the secret person of the heart." Well the secret person I am has my invisible friend there too.

    Another challenge I have to my identity is that I have always been a strong willed, determined woman. When something needed done, I just did it. If wood needed to be split, I split it. I never shrunk back.

    But now my body is so sensitive. Too much light, temperatures too cold, too much stress, any of those things and I am sick. I feel like I have the personality of The Hulk and the body of the princess in The Princess and the Pea. My body does not match who I am as a person. I am so fragile. I hate that about myself. I don't want to be so sensitive. It is not who I am. But it is what my body is. I don't know if I will ever put the two together into one person.

    [This Message was Edited on 01/29/2009]
  6. babyk902

    babyk902 New Member

    before CFS i was a very outgoing, smart girl with a lot of energy and a sense of humor, and really just knew how to enjoy life.. i have done a complete 180 since then, its been four years now, and this disease has inevitably forced me to be a different person. I have zero energy, I can barely make time for my friends (even just keeping in touch with them) because I'm too exhausted, my memory is pretty much shot, and I've definitely lost my sense of humor.. and it really frustrates me, I used to be so carefree and take things so lightly.. now I just snap at everyone, esp my family members, and get so frustrated waking up every single morning feeling like a bus hit me that I'm just in a constant bad mood. I think this illness has certainly affected my nervous system as well, I'm SO anxious all the time, constantly worrying, it has really had an impact on my life. its really tough. I don't even remember what it feels like to be normal anymore, and I'm sorry if this sounds like another sad story, but its the truth. I really just wish that we could find the answer to this illness and I wish everyone the best of luck on their journey finding it.
  7. tabby8

    tabby8 New Member

    thank you for sharing; all of these posts make me feel that i'm not alone.
  8. Bunchy

    Bunchy New Member

    What a positive attitude you have :)

    Your post was beautifully written and great advice for those who are struggling to live alongside these illnesses,

    Love Bunchy x
  9. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Thanks. What is it they say, change what you can. And if you can't change it, learn to live with it. Each person's life has its own advantages and disadvantages. No one has no limitations. With some it is health, with others it is finances, and with some it is both. But God's gifts are often just outside our window. Even sometimes, they are inside our house. And for some, the gift is in our own personhood.

  10. AuntTammie

    AuntTammie New Member

    For me, the CFS and Fibro have had a tremendous effect on my sense of self, and a very large effect on relationships in general. I used to have a ton of energy and work, go to school, run marathons and swim a lot, do other sports, go skydiving, go to church, volunteer, hang out with friends, etc. Now I sleep until noon or later, exercise 20 minutes or so on a good day, and get one or two other things necessary for daily living (laundry, groceries, etc) done...on a bad day, I never make it past the couch. I do go to church, but that is the only social life I really have. When I feel up to it, I also go to a Bible study, and I do see friends and/ or family, but that is very rarely. I have no life anymore, and I can do very, very few of the things I used to do. Of course, that has an effect on my sense of self, and on the relationships that I seldom have the energy for. It also put a big strain on some relationships for awhile, because certain people didn't seem to believe that I wasn't faking it. It has also made it incredibly difficult to try to meet someone for a dating relationship, and if I ever actually made it as far as getting married, I would not be able to do my share of the housework or go out or anything, and having kids is pretty much out of the question. That is something that I have always wanted more than anything.

    The good side of this, though, is that it has improved my faith and my relationship with God. Being forced to slow down has given me more time with Him. It has also forced me to really prioritize what matters and who matters. I enjoy the little things so much more, and I don't waste time on things that aren't that important. I value the people who are still in my life so much more, too. That's because I get so little time with them, the time I do have is that much more precious. Plus, I can't give much of anything to my relationships now. So, knowing that there are still people who are there, and who care when they aren't getting anything from me, means a lot. I just hope that they know that if I am spending my limited time and energy with them, they mean a lot to me.