Discussion in 'Fibromyalgia Main Forum' started by Lolalee, Jun 26, 2006.

  1. Lolalee

    Lolalee New Member

    Please don't be discouraged by the size of this post. If you set aside the time to read it, you will be so glad that you did.

    As an FMS/CFIDS sufferer I find that more often the thing that gives me the most healing, peace and comfort is solitude. I found the following article which articulates so much better than I can the benefits of solitude.

    Let me warn you that it is very lengthy, but definitely worth reading, in my opinion. You might want to print it or copy and paste it into a blank document that you can format to your preference for easier reading.

    Please let me know what you think.



    In Praise of Solitude

    By JoWynn Johns

    Note: Before becoming disabled with CFIDS in 1993, JoWynn Johns had developed a management consulting business following 25 years as a corporate executive. She is a graduate of the CFIDS Self-Help course.

    Many people with CFS and fibromyalgia suffer from social isolation, from loneliness, and from just no longer being out in the world as much. Our culture teaches us that "real life" is active, involved life, the extroverted life. We're taught that people who enjoy being alone are somehow a little abnormal. That makes it all the more difficult for people with Chronic Fatigue Syndrome or fibromyalgia to accept the fact that we have to spend more time by ourselves than we want to.

    All my life I felt that I didn't have enough time by myself. Yet I resisted doing anything about it until CFS forced me into seclusion. After two years of soldiering on with worsening symptoms for which neither my doctor nor the psychotherapist to whom she referred me could find any cause or remedy, I was forced to stop working. I thought that maybe a year off, practicing meditation in a quiet place, would relieve the overwhelming debilitation and bizarre symptoms. Ten years later, though, I still have CFS and I'm still living mainly in seclusion.

    A Forced Decision

    Initially I was very conflicted about choosing solitude. On the one hand, I believed I needed to do so to get well and, sick as I was, I really wanted to get away from the stress of all my responsibilities. But on the other hand, I had no proof and no professional advice that going into retreat would restore my health. I felt guilty about being absent, maybe without justification, from family, friends, associates and clients who counted on me. I felt somehow that it was wrong for me to want to be alone. Moreover, I knew that I would miss my loved ones, especially grandchildren, and I was afraid they would no longer need me or feel that I was important to them. Frankly, I feared becoming Nobody and being forgotten. While I needed and wanted solitude, at the same time I questioned my right to withdraw from my world, and I feared the consequences.

    Thus, I did not embrace solitude whole-heartedly at first. Over time, however, I came to love it. And it's a good thing that I did, because my disordered, malfunctioning autonomic nervous system and depleted adrenal glands require it. Initially, I was so disabled by CFS that I was completely housebound and had almost no contact with anyone other than my husband. Since 1999 I have been receiving naturopathic treatment that has increased my functionality and made it possible for me to be out and about and to visit with family and friends. When I exceed my limits and symptoms return, I recover more quickly now than before. Thus, I am no longer as isolated as I was for several years. To feel my best, however, I still must limit my exposure to "the world."

    And I have come to welcome the blessings of solitude.

    The Gifts of Solitude

    First is freedom. For me solitude brings freedom from the needs, demands, and expectations of other people. Because I have a strong will to do what I want, it's not easy for me to accommodate others. Solitude frees me from having to do so. Not having to take care of, pay attention to, or adjust myself to others, I can do as I please! Within the limits set by CFS, of course.

    Second, solitude is the prerequisite for those activities I can pursue--reading, studying, thinking, writing, needlework, and meditating. In my over-active lifestyle before CFS, I didn't realize how much I missed intellectual, spiritual, and creative work. Enjoying my career and family life and the rewards they brought me --recognition, a sense of competence and accomplishment, appreciation, good income, and many pleasures-- I had a rich, full life that I didn't want to give up. By forcing me into solitude and inactivity, CFS has given me the opportunity to find out how starved my soul was. I am by nature a contemplative, introverted type who may need more time alone than others do.

    Third, solitude has brought me a new intimacy with myself--my physical-mental-spiritual self. Besides recognizing my contemplative nature, I've become acquainted with my body, its processes and systems, its needs and signals. I have learned to pay attention to it, to befriend my body, poor workhorse, and to take care of it. In doing so I'm becoming more compassionate, more aware of the physical suffering of others, and more patient.

    New Realizations

    Through meditation practice in solitude, I've seen how my mind works, how it fools me with baseless thoughts that I mistake for reality, how its conditioned and conventional views lead to habitual responses, automatic attitudes and behaviors, and needless suffering.

    By becoming more aware of my spirit, I've realized that I'm not just the separate body-mind personality I think of as myself. I'm also radically, wholly, immersed in all that is, totally integrated with the universe, partaking of the energy that vitalizes everything. Through my spirit, I am in constant communion with the Source; I'm not alone, not separate. My little self, though a unique and precious individual being, is also at-one with Spirit. I've found in solitude a me with whom I was scarcely acquainted in my previous life.

    New Pleasures

    My relationship with my beloved husband has also become deeper and closer. Because we spend most of our time alone, separately, I enjoy togetherness as I couldn't when my life was so busy. I appreciate our bond more than ever.

    Even though I have always been a lover of the arts, in solitude I've developed a more profound appreciation of them. I respond more wholeheartedly to familiar and new literature; to the pictures, wood carvings, and pottery in my room; to the prints, photographs, reproductions of paintings, and needle art I study in books and journals; to music, coming to me through broadcast and recordings; and to plays, films, and dance seen on mail-rental videos. Experiencing these works alone, without distraction, I find they touch me more deeply, transforming my way of seeing and inspiring my imagination.

    My senses, too, have become sharper and clearer. It's as though a film has been removed so that I touch, taste, hear, see, and smell with greater acuity and vividness. The lustrous silky feel of my new satin bra, the succulent deep-red flavor of local tomatoes, the faint sound of doves cooing at 5:30 in the morning, the shades of gray in a stormy sky, the "eat-me, eat-me" aroma of onions sautéing sweetly in olive oil--these sensations fill me with wonder. It's not that I didn't appreciate them before, but that in solitude the pleasure is more intense.

    In solitude the non-human world speaks to me, and I now hear it. Air with its clarity or haziness, stillness or motion; water streaming in rain down my window pane; trees into which I look through my windows; flowers in the courtyard and houseplants in my room; birds alighting on the ledge outside my sixth-floor window--all are eloquent, full of meaning, ever interesting.

    Things made by people, as well as natural phenomena, capture my attention: the faucet at my kitchen sink reliably delivering drinkable water; the ergonomic recliner supporting me in comfort; the computer, telephone, and postal service connecting me with the world. I am awestruck by these wonders of human ingenuity.

    Seeing Myself as Others See Me

    Another gift of solitude: becoming acquainted with my shadow. As I lie awake for hours every night, unwanted memories of my past life arise repeatedly. I see myself being overly aggressive, insensitive, arrogant, much too sure of my ideas and views. I cringe with embarrassment at my way of interrupting others, talking over them to make my point; attracting attention to myself; ingratiating myself with powerful people; seizing opportunities to promote myself. I weep with regret over my ignorant actions and thoughtless failures to act. I am humbled, as I acknowledge these disagreeable, unlovable qualities. With this view of myself, so contrary to my usual high self-esteem, I wonder that people care for me and like my company anyhow.

    Finding Creativity

    Finally, to my amazement, in solitude I've found a creativity I never suspected. Before CFS, I was an organizer, entrepreneur, manager, and consultant. I was proud of my productivity, of how much I could get done. In the solitary, slowed-down life CFS has forced on me, I have found the joy of needle art, designing and stitching original work. I have become a creator. Once a woman who made things happen, now I'm a woman who makes things, slowly, one stitch at a time.

    My life in solitude is a rich life, blessed with gifts of wonder, humility, gratitude, sensual pleasure, a new sense of me, a more profound partnership with my husband, a stronger consciousness of belonging to the Whole, and of my own creativity. More awake and aware, I experience everything--even taking a shower--more deeply. While it's true that my outward life is much less than it was before CFS --less mobile, less involved, less varied-- my inner life is much more --more full of meaning, more intensely felt, more deeply satisfying. In solitude, I have Life more abundant. Amazing!

    No longer missing the identity I once had, no longer afraid of being invisible, no longer driven to accomplish anything, I am content. What I long thought I wanted, more time by myself, is exactly what I needed. I have been transformed by CFS and I am grateful for it.

    [This Message was Edited on 06/27/2006]
  2. sues1

    sues1 New Member

    Thanks for sharing. I can identify with parts of it. Sometimes others will say that I isolate myself to much and I say that I sometimes enjoy it. I have no pressures and enjoy the little things.
  3. Lolalee

    Lolalee New Member

    ..[This Message was Edited on 06/27/2006]
  4. sascha

    sascha Member

    really good take on this unaddressed aspect of chronic illness. i want to make copies and take it to my support group for cfids/fm.

    for myself, i notice i get sensory overload 'out there' quite frequently. noises too loud, traffic too rushing, lights too bright, people too jammed together. when i am above a certain threshold, all that can be exhilarating for a certain period, but when (often) i've slipped below that threshold, it's too too much, and i need to retreat. i notice also that i must have time alone. lots of time. it seems to be absolutely required.

    thanks for the article and the thoughts- sascha
  5. sascha

    sascha Member

    really good take on this unaddressed aspect of chronic illness. i want to make copies and take it to my support group for cfids/fm.

    for myself, i notice i get sensory overload 'out there' quite frequently. noises too loud, traffic too rushing, lights too bright, people too jammed together. when i am above a certain threshold, all that can be exhilarating for a certain period, but when (often) i've slipped below that threshold, it's too too much, and i need to retreat. i notice also that i must have time alone. lots of time. it seems to be absolutely required.

    thanks for the article and the thoughts- sascha
  6. ephemera

    ephemera New Member

    this article is from the Washington Post.
    i think it's especially intersting in view of the above article. Who do we turn to when we need help & support?

    Why So Lonesome?

    By Sebastian Mallaby
    Monday, June 26, 2006

    The question about loneliness is: Why do people do this to themselves? Why do Americans, who reported an average of nearly three close friends in 1985, now report an average of just over two? And why does one in four have nobody with whom to discuss personal issues? This is the age of Oprah and MySpace, of public emoting on television and the Web. Apparently people watch "Friends" but don't actually have many.

    When the new loneliness numbers appeared Friday in the American Sociological Review, some experts cautioned that the problem can be overstated. Americans say they feel close to an average of 15 others, according to Barry Wellman and Jeffrey Boase of the University of Toronto. But there's a difference between extensive networks and deep ones.

    If you get sick, stressed or just plain sad, you are going to want the sort of friend you can rely on. Maybe you'll be able to convert an acquaintance into a soul mate when you discover you need one. But this just-in-time approach to emotional crises isn't always going to work. Look at the way the slow decline of friendship has been mirrored by the rise of emotional problems. Over the past half-century, the prevalence of unipolar depression in affluent countries has jumped tenfold.

    People's myopia on friendship is like their myopia on saving. They know that jobs are insecure, that a health problem can cause bankruptcy, that retirement is fabulously expensive; but the household savings rate has fallen below zero. Equally, people know that spouses aren't immortal and that divorce is common. But nearly one in 10 -- a much higher share than in 1985 -- reports that their husband or wife is the only person they confide in.

    People are taking these financial and emotional risks even as they neurotically avoid other risks. Today's consumers buy bike helmets and ski helmets and antibacterial soap; they fret about partially hydrogenated fats and consume less tobacco than their parents. But by some reckonings social isolation is as big a risk factor for premature death as smoking.

    You can see how this American isolationism sets in. Modern society creates the tools that allow you not to save -- if you have to pay for the kids' college, you can refinance your home -- while doing little to change the basic need to save for old age and misfortune. In the same way, modern society creates tools that extend your casual networks -- e-mail, instant messaging, social-networking Web sites -- while doing nothing to remove the basic need for soul mates.

    Meanwhile, people work more hours. They commute longer because they've moved to the exurbs in search of larger homes; they've got spacious entertainment rooms but no mental space for entertaining. And then there's the subtle effect of the culture. "Family time" is endlessly extolled, and lovers emit poetry and song about every facet of their relationships. But when was the last time a rock singer or a new man waxed lyrical about friendship?

    Yet the biggest reason for American loneliness, and perhaps the clue to some kind of cure, lies in path dependency. People know that tending to friendship is important, but their behavior follows the path created by countless other decisions -- and friendship is neglected. Social science experiments reveal lots of behavior of this kind. People who agree with their doctors that they need hip replacements seldom get around to having the procedure.

    There are ways to beat path dependency, however. Another experiment has shown how undergraduates who agree to get a tetanus shot seldom actually do so, but if you make them an appointment and hand them a map to the clinic, the odds that they'll comply leap tenfold. Savings habits are equally sensitive to slight tweaks in incentives. Invite workers to sign up for 401(k) pensions and many will procrastinate. Tell workers they are part of the program unless they opt out and the participation rate rockets.

    Can Americans be prodded to invest more in friendships? It's hard to imagine American companies organizing regular Japanese-style drinking sessions for the staff; it's hard to believe that a French-style cap on working hours would do more than encourage yet more lonely Web surfing.

    Twenty years ago, remarks Princeton's Eldar Shafir, a concerned European might have prescribed an emergency program of cafe construction: a reverse Marshall Plan for cappuccinos. But now Starbucks has run that experiment for us. American caffeine addicts demand lattes to go -- or to sip as they enjoy the company of Wi-Fi-enabled laptops.

    But there's one antidote to loneliness that is at least intriguing. In an experiment in Austin, Princeton's Daniel Kahneman found that commuting -- generally alone, and generally by car -- is rated the least enjoyable daily activity, but commuting by car pool is reasonably pleasant. Measures that promote car pooling could make Americans less isolated and healthier.

  7. Lolalee

    Lolalee New Member

    Help and support? I come to this message board when I need support because this is the only group of people that I know who actually is experiencing the same things that I am. Or I turn to my sisters, one has Lupus and the other, Hepatitis. When I need help, (it depends on the kind of help) I turn to my husband, my pastor, my doctor, my few friends who still love me in spite of the fact that I cannot be the kind of friend I want to be.

    The article I posted addresses Solitude as a means of healing or survival in the face of chronic illness.

    The article you posted addresses Loneliness imposed upon people because of their lifestyle choices.

    I can see the crossover, however, essentially these are both different things, do you agree?


    [This Message was Edited on 06/27/2006]
  8. Marta608

    Marta608 Member

    Beautifully written and almost true.

    Now I've told you that, I have to say that this gal doesn't know solitude until she also has eleven years or more with no "beloved husband" with which to share that solitude at the end of the day. NOT that I wish that on her, I hasten to add, but this has been a very hot button for me for years. People who talk about how very alone they are - until their husband's come home. Welllllllllll, lemme tell 'ya a story.

    Thanks for letting me get that off my chest.

    [This Message was Edited on 06/27/2006]
  9. Lolalee

    Lolalee New Member

    You have every right to feel as you do. We don't have to look very far to find someone who has a more difficult situation than our own. However, I think that since that will always be the case, this should not be a reason for holding in one's suffering. Ok this isn't coming out other words...we each have our own cross to bear and some of us are stronger and some of us are weaker. Suffering is suffering...loneliness is's all hard. How would I know if mine was worse than yours? ...Or yours worse than mine?

    We'd have to walk in each other's shoes, right? I have people say to me "Oh my back hurts,but I'm sure it's nothing compared to what you go through". I tell them that it is their pain and it is just as valid as my pain. How would I know if that back ache isn't just as bad for this person as FMS and CFIDS is for me? I don't know that. That backache might send that person into desperation.

    We do the best we can with what we have and give it over to God and hopefully get through another day with some joy.

    Marta, did that all make sense? I'm sorry about your spouse. I really didn't know where I was going with all this at first. I certainly do not intend to diminish your grief. I don't know what I would do if I lost my husband, my best friend of 23 years. I would probably feel the same as you. But, I think it's possible for some people to feel very lonely in a relationship.

    With all that said, I do agree that solitude can be healing and is sometimes exactly the thing that will put us on right track.


  10. victoria

    victoria New Member

    I've always enjoyed as well as needed solitude.

    Its amazing how we so often get caught up in 'Modern Life" when healthy, and don't take time to reflect, etc. I think Loneliness is something we all have to deal with on some level with these DDs, married or not.

    Thanks for posting!


  11. Marta608

    Marta608 Member

    You are right, of course, about how possible it is to be lonely in a relationship and I do consider that. And you're right to remind me that I can only speak for myself.

    It's just another side of the story, that's all. A side that I really don't think some people know or consider if they aren't alone. I'm not saying that my lonliness is worse than theirs, just that .... no, I AM saying that it's worse. Nuts.

    You're right. But I'm still glad I got it off my chest. lol

  12. Lolalee

    Lolalee New Member

    Thank you for understanding what I was trying to say. If you have the cognitive dysfunction that goes along with FMS/CFIDS, you know how hard it is to put our thoughts into words. And then to make it harder...put those words in writing. YIKES!!! It can totally come across as the opposite of what our thoughts were.

    You did receive what I said in a gentle, understanding way and I'm grateful for that. I hear what you are saying and you have every right to feel that way. I respect your honesty. As I said earlier, in your shoes I would probably feel the same way.

    Bless you,


    [This Message was Edited on 06/27/2006]
  13. Lolalee

    Lolalee New Member

    I know what you mean about no pressures and enjoying the little things. When you are not bombarded with the things that busyness brings, you take time to notice the small blessings.

  14. Lolalee

    Lolalee New Member

    I'm glad you found this article to be helpful not only for you but for your support group, as well.

    I, too, need lots of time alone. It took getting sick for me to realize that. I could be feeling ok and I walk into a "big-box" store and within 15 minutes I hit the wall and feel the effects of the noise, lights, odors, people,etc.. AAAAGGGHHH!!! It's toxic.

    I am still recuperating from having my two grandsons (ages 7 and 5) visit for 2 weeks. It was fun, but I got severely overloaded and I am suffering the consequences.

    Thanks for responding.


  15. Lolalee

    Lolalee New Member

    Thanks for taking the time to read and respond to my post. Yes, I, too, do much better when I have periods of solitude. As I said earlier, it took getting sick for me to stop and appreciate the small, quiet blessings in my life. I wouldn't want to go back to the life I had. Don't get me wrong, I do want good health. I would just live my life differently.


  16. Sandyz

    Sandyz New Member

    Thanks for a good post. The isolation can be so hard but maybe we need time to learn about ourselves and be comfortable with who we are. I`ve certainly gotten to know myself better having Fm. You don`t have the energy to focus on outside relations, so you spend a lot of time with the most important person...yourself.

    I had to go to my son`s baseball game today. Sitting on the bleachers for four hours was hard but even harder was trying to be a little social with the other parents. They can talk, joke around and laugh so easily. I can`t think of much to say. I sure don`t feel carefree like they seem in their lives. I feel troubled by all I`ve been going through.

    I wish more people understood how hard this all is and would offer a little understanding and uncouragement. That`s all I would need and I could come out of my shell more and open up and trust again.

  17. Lolalee

    Lolalee New Member

  18. gracepartaker

    gracepartaker New Member

    This solitude article articulated so well how I feel. I actually see CFS as a blessing because of how it has deepened me into solitude. But I don't read about that much in CFS literature. So thanks so much for this
    Blessings, Sally
  19. Daisys

    Daisys Member

    I've known my whole life that I need to be alone a lot. I was raised in a large family and for awhile I played hookey so I could sit in my pleasant, windowed closet and be alone. (junior high)
    Even before I got sick, if I was around people day after day, all day long, I used to stop hearing them, just see their mouths move. Then I knew I needed to be alone the next day to recuperate.
    So...I've gotten comfortable with being alone in my chronic illness. Now I'm getting better, on Xyrem, and it's a real adjustment. I feel the obligations of a normal person: the responsibility of keeping up with friendships with people I love, and being there for them. I think it's good for me. I don't want to be totally self-absorbed.
    So I know what you're saying, Lolalee, because I've always valued my artistic side, and it takes being undisturbed to express it for me (My talent is not in being playing music, but in painting). And I certainly appreciate that my aloneness is not the same as being lonely. I have a loving husband. I dread the thought of him not being there.
    I think there's a healthy balance. People need people. People also need to be busy doing something meaningful. I'm trying to find that balance of aloneness/social time as a healthy person, and it's a challenge. Odd, I never expected to feel apprehension about getting well.