Social isolation

Discussion in 'Fibromyalgia Main Forum' started by ISSGOD, Feb 15, 2009.


    ISSGOD New Member

    How do you all deal with the social isolation? I am 43, single, live with 2 roomates who I hardly ever see. I cannot work, but am well enough to get out and walk from time to time. My problem is I never know when I will be sleeping or awake... sick or sicker... so I cannot make plans and possibly hope to keep them. I want to volunteer somewhere, but just when this seems a possibility, I get sick... been sick with a cold and ear infection for over a month now.

    It just seems that no matter how hard I try, I end up alone and isolated in this tiny apartment with no positive outlook on my future life. I would give anything just to be able to volunteer somewhere, but I cannot get my health stable enough to even do that.

    I left my wife of 16 years in '07 and every since then the icy fingers of isolation have been slowly removing me from life and society. I play lots of video games, watch tons of t.v. and movies, and also surf the internet... but I am sooo bored with all of this. I want a life so bad... but cannot seem to get one. To be part of life takes money, and this is somthing that I have little of. So when I am feeling well enough to get out and walk, I see happy people out with their friends and family, spending money on an evening of entertainment... and it just makes me feel so alone.

    I am on the outside looking in... forever looking in...

    [This Message was Edited on 02/16/2009]
  2. TeaBisqit

    TeaBisqit Member

    I am just as alone. I tried to volunteer at a senior center about a year ago. I ended up so sick after three weeks, I collapsed on my front lawn, got two hairline fractures in my leg from it and couldn't walk for four month. I would never try it again. And for the three weeks I was there, it was hell and torture. The light, the sounds, everything made me sick. It was not a fun experience. I did feel better actually getting out and being with people, but physically, I just couldn't do it.

    No one understands how bad this is and that we end up living lives of solitary confinement. It's a horrible, isolating illness.

    I have no answers. It's just plain awful. I'm alone, too.
  3. SolSerenade

    SolSerenade New Member

    hi ISSGOD,
    my life is very similar to yours, 44/m, but never married and no roommates ... other than that, all the same. I don't have an answer - it is the definition of this damn disease!

    All I can offer is, "you may be alone, but there are many others out here feeling just like you". It is very sad.

    i'm sorry if that is even more depressing -- just know that those of us that understand do care and wish and pray that something changes for all of us.
  4. LadyCarol

    LadyCarol Member

    The isolation and loneliness are one of the worst aspects of the illness. Not being able to plan to do something at such and such time etc. isn't easy to accept or come to terms with. I get a few hours of relief and then meltdown occurs and I don't know when the next time will arrive when I'll feel well for a few more hours. Other people don't seem to understand why you can't fit in with their lives, and many of them don't make the effort to visit, phone for a chat, write, or offer support or help which just makes one feel worthless and unwanted.

    Friends fall away like leaves fall from a tree in the autumn, no longer are you of value to them now you don't make them laugh, fickle and shallow are the many, sincere and loving the caring few.

    I've found it helps by going out to a cafe' and having a cup of tea and reading a newspaper helps. I'm with other people and not in the house and that gives me a boost. Sometimes I have a conversation with someone who is likewise having a drink. Other times I'm too tired to converse with anyone but manage to just read some of a newspaper. A walk helps as well but during a bad spell it can be several weeks before I'm able to go out and walk so I take the opportunity to walk whenever I feel able to do so not knowing when the next time will be.
  5. AuntTammie

    AuntTammie New Member

    I don't have anything to add really...just wanted to say that I completely understand....I live alone and am disabled by this dd, so I often feel very isolated and I hate that. I try to find as many opportunities to connect with others as I can, even if they are incredibly small moments. On the upside, this has allowed me to view things that I used to find annoying as one more chance to connect with waiting in line or having to share a lane at the pool if I am feeling well enough to swim. Yes, it's a sad substitute for a more real relationship, but it has made me value the things I can do and the people that are still in my life and the time I do get with them so much more.

    ISSGOD New Member

    I have a lot in common with all of you. None of my friends or family understand or care. And when I am around them and they ask "so how are you" I think to myself... do I lie or tell the truth? If I tell them really how I am feeling, I sense that they were not that interested and it feels awkward.

    I am lucky as I tolerate walking very well. I started walking after I had to sell my car for scrap metal because I could not get it fixed. From November 08 to early January 09 I was walking a good 4 miles a day, longest walk without a break was 6 miles, and most miles walked over the course of a day was 12 miles. But then in mid January I got sick, and have hardly walked at all. The only time I walk now is when I am almost out of food, so I walk to the nearest store 1 1/2 mile walk round trip. So I do enjoy my long walks when I can do them, but been stuck inside for the last month sadly.

    Part of me says "count your blessings". I have a small HDTV, an XBOX 360, a nice PC, and a old laptop... but despite this I am not happy. I keep thinking that I need to be happy with what I have, but every time I go for my walks, I see happy people enjoying their life, and it is in stark contrast to my solitary life... sigh.

    I even tried dating, dated a couple wounderful and beautiful women, who in the end said " I did not realize how serious your illness is"... so game over. One broke it off with me and one I broke it off with.

    I just cannot at this time accept being so isolated and will continue to do everything I can to find people to be around.

    P.S. I have been ill since 1995
  7. Risk

    Risk New Member

    How I feel for all of us. My husband left me 3 years ago during a peak fibro/cfs
    flare. He told me he couldn't deal with my illness anymore. We were together
    for so long. Broke my heart. Divorce was finalized last Feb and I'm heart broken.
    I've been forced to sell my home and move to a place where I know no one.
    We would have been married 25 years. I have two daughters, 20 and 23
    but they are on their own. The overwhelming loneliness is more than I can
    bear. I did volunteer in a nursing home but that's before I felt so lousy.
    I have dated in the past but now I can barely leave the house.

    To boot, my ex just announced that he is getting remarried. Didn't take him
    long. I'm a good kind person and can't believe this is happening to me.
    I just want someone to wake me from this nightmare. People keep saying that
    I will meet someone. Where?? I can't make plans in advance because I never
    know if I will be able to follow through.And who wants someone with a chronic illness?

    You all are in my thoughts and prayers. Nothing is worse than being alone.
    I thank God that I have my two cats.


  8. Rosiebud

    Rosiebud New Member

    the isolation can be really terrible. I am so glad that I am sick at a time when there are computers - imagine what it must have been like to be like this 30 years ago.

    I've felt a little better these past two weeks thanks to a stronger painkiller and I too would like to volunteer. I've felt so bored now that I can get out of bed but I'm not able to go out and do much so I'm thinking of offering my services to teach English to foreigners. Maybe have one student who will come to my home once or twice a week and who will understand that there will be times when I will have to cancel at short notice and maybe weeks when I wont be able to see them.

    As I am going to provide a free service I am hoping I can find someone who will be happy with that arrangement.

    If not then I will have to rethink the volunteering, helping someone learn English in my home with the understanding that I do get sick is the only thing I can see working for me.

    Good luck. Let me know if you come up with something that works for you.

  9. ask2266

    ask2266 Member

    I was watching a Frontline on Parkinson's today, and I was feeling very sad for all of the people, like many of us, who are struck ill when they are younger and have no one in their life or lose the person in their life because they got sick. I've been alone 2 days because my husband is gone.

    Even though I'm lucky to have my husband, I understand how isolating this is. I feel like people don't really care, but why should they? Until you've been truly sick like this, you just don't understand, and once you undertsand, then you're too sick to help anyone else. I swing wildly from functional to bedridden on a weekly basis, and I hate looking like the perpetual flake. I feel like my husband doesn't even believe me anymore when I say I can't go do this or that because I'm feeling poorly.

    That said, you can do things that allow you to be flexible and do them when you feel well. That's a consensus. I think volunteering to teach English at home is a great idea, and I think you could have an impact on that person's life. I'm trying to write a book help others with insurance and social security issues. I used to be a lawyer.

    I know it feels like everyone is married or coupled, and that hurts, but, truth be told, I have a wonderful husband, but I'm still alone. This illness makes you alone in your own home, even when someone's in the other room. It's a terrible beast, and it consumes your life when it's hungry, including your relationships.

    Posting on here has given me great solace. Using your computer to connect with others is sometimes the best thing we have. God bless.

  10. aleutian

    aleutian New Member


    I'm in a similar situation. I would like to talk with you. How can we connect?

  11. quanked

    quanked Member

    It is unfortunate fact of these dd's--the islolation I mean. What I miss is deep connections that require in depth conversations over time. I was a follow through kind of person. I do not allow myself to make plans most of the time. I made plans to travel 160 miles round trip to see "A Powerful Noise" with friends. I am worried that I will have a flare and be unable to go. It would be my choice to see it here. Not sure what got into me.

    I want to be involved in life. I miss it a great deal.

    I have met a couple of people along the way that I would have loved to have in my life. I have nothing to offer them but excuses about why we cannot get together. I broke that rule a couple of years ago. I know this friend never fully understands why we do not get together more often. She is full of life most of the time and has boundless energy which I now find amazing to witness. I recall the time when I never slowed down. Sometimes watching her makes me smile and sometimes I just want to cry.

    I am grateful for my computers, tv and cable and telephones. I am deeply appreciative of this message board. It helps me get through for sure.

    I do not think there are any real solutions to these lives we lead beyond doing what you can when you can. I like arts and crafts, good films (rare), tv (I am very picky and careful), etc. but these are activities and not human connections. I do not get bored often, but being in a mental fog frequently helps with the boredom : ) I often cannot think well enough to get bored. I use to read endless numbers of books but I cannot do it anymore. I miss reading. There is so much I want to know. My brain does not process well. And recall can turn into something quite frustrating.

    However, I love solitude. My life has my husband in and out (he travels for work) and my youngest son sometimes lives here. I have 3 dogs, a cat and sometimes farm animals. So sometimes I do not get all the alone time I want and need. I have to deliberately isolate. Fortunately no one is put off by this. I have months of solitude at a time. I can have periods of intense enjoyment of being alone and having nobody else but my pets to care for. The house can get as dirty as I let it and I do not have to feel bad because I cannot keep up.

    If I did not have these dd's I would not spend as much time alone as I do now. I would have a life of some kind. I cannot imagine this anymore.
  12. Sunspot

    Sunspot New Member

    I would like to thank everyone who posted on this topic... Just hearing about other people 'in the same boat' makes me feel less alone. I too am single, in my 50s, and I can't imagine having the energy to date or get to know someone... It can be very stressful just to meet people. And I need my precious energy for other things.

    I do think we can have more happiness though. There are some kinds of volunteering that don't take much energy and/or can be done when you're able to. I am a pen pal to 3 prison inmates, and have found this very satisfying. I love getting snail mail letters (most of them have no access to computers) and we are definitely developing relationships over time. I don't focus on what they did to become imprisoned, I figure we've all made mistakes in the past. Most live in extreme deprivation and many hear very rarely from friends or family members, so they are very grateful to have someone to 'talk' to.

    Another possibility is to contact the volunteer bureau in your town and find out if they have a telephone program to keep in touch with seniors. There are lots of isolated seniors who appreciate a daily or at least regular phone call from another living soul.. I'm sure there are many other things we can do. If you call your volunteer bureau and tell them your circumstances they may be able to offer a few alternatives.

    I just started taking an online course called Awakening Joy. It looks really good. It's 10 months long and he makes various recommendations for increasing pleasure/contentment/happiness in our lives, including singing every day or doing some other form of self-expression. There are days I don't do much of anything, but I'm learning to just pick up and carry on rather than beating myself up about it. The course is by donation, so anyone that has computer access could afford to take it. If you're interested you can read about it at

    I'd also recommend cognitive self-therapy. Often we totally believe the negative things we tell ourselves, even though it isn't true or perhaps isn't wholly true. T

    here are a few really good books on this subject that help us retrain our minds to challenge the validity of these thoughts before we send our feelings down and over the cliff of depression... Mind Over Mood is good, and I especially liked Feeling Good, or any of Dr. David Burns' books.

    The message I'm getting from both the books and the course is that being happy is something that needs to be cultivated. We need to put at least a little effort into training our minds towards being happier.

    What I'm learning is that whether or not we realize it, we may have trained our minds to focus on less happy aspects of our lives. Apparently research is finding that the brain builds neural pathways to support whatever demands we make on it... So if we focus a lot on negativity, the neural pathways will make it easier and easier to go that route. But if we make a little effort to walk on a sunnier side, the brain will respond and will make it easier and easier to do that.

    Happier days to us all!

  13. Risk

    Risk New Member

    Hmmm, I responded with my email. Not sure if we are allowed to do that on the boards, but I'll try again.

    Looking forward to chatting.


    Mary, you have to change your settings to allow emails. Maybe that's why you didn't get my response.

    Take care.

    Rene[This Message was Edited on 02/23/2009]
  14. SolSerenade

    SolSerenade New Member


    hope you're doin' o.k. ... just though i'd add that I am very into a rather narrow niche/genre of PS2 gaming: auto racing games with a Logitech steering wheel.

    actually, i thought it relevant to mention it here, because to be honest, part of how i justified spending the money on the wheel, is that it is a "physical therapy" activity/experience. (really requires full-body movement - can be quite "lite" - appropriate for not feeling "payback" for it.)

    .... happens to be REALLY fun too!!! (only drawback is can only do it in short spurts, not too often, due to over-stimulation/eye-head problems, sore back, etc.)

    and, it doesn't do a lot for improving social life (unless you're able to play online-i'm unable) ... that's a really tough one. I hear ya!

    best to ya.
    [This Message was Edited on 02/24/2009]
  15. SolSerenade

    SolSerenade New Member

    hey there,
    thanks, i appreciate your post ... good suggestions and attitude and ideas.
  16. rockgor

    rockgor Well-Known Member

    The isolation and boredom seem to be part of these DDs. I retired from part-time work a few years
    ago, so no longer have friends at work. Used to play at a bridge club, but brain fog and Alzheimer's
    won't allow that anymore.

    I come from an alcoholic and dysfunctional family, so relatives can't really help much. My son
    doesn't want to have anything to do with me.

    All of you are right about making appointments. Just never know if we will be able to keep them.
    I frequently am awake all night and then sleep most of the day. I hate it when I have to
    worry about getting somewhere on time.

    Somebody suggested helping at an organization w/ a flexible schedule. Good idea. Hope you can
    find one. Several years ago I volunteered at an AIDS organization and called people to chat.
    Since the organization got govt. money, it had to keep records. For every phone call, I had to
    fill out 3 forms. I called two dozen people each visit, but usually only 3 or 4 answered the phone and
    half of them said they were to sick to talk. Not really a satisfying experience.

    If I were healthier, I would love to be a docent at the local Gene Autry Western Museum.

    Anyway, pets are helpful, I think, if you live where you can have same. You might try visiting the
    chit chat board. Check out the book club and the porch thread. There are also various groups on
    the net. Tried any of them?

    Sunspot, I agree. David Burns and cognitive therapy are very helpful. Risk, you can find the rules
    in the upper right hand corner.

    Most of my social life nowadays is right here on this board. Good luck, Issgod.

  17. SCAP

    SCAP New Member

    when i read your post it was like reading about my life,,,,,,,,,people dont understand,,,,,,,,,i went to my rhumy yesterday
    His advice,,,,,,,,,,,,,,He said,,,,,,,,,I needed to have fun,,,and be social,,he suggessted MALL WALKING,,,,,,,,,,,,omg,,,,,,,,,,,,really,,,,,,,,,,,im 41/f,,,,,,,,,,,,,,,,,,,,,,I have no energy for that,,,,and i find the mall DEPRESSING,,,,,,,,,,,,,,,too many happy people,,,,,,,,,,,,,,,,anyway the dr gave me something call PRISTIQ,,a antidepressant.......................I ahvent tried it,,,,,,,,I feel like a guinea pig or lab rat,,,,,,,,,,,,,,,,,,,anyway,,I totaslly get what your saying,,Im in the same boat,,good luck
  18. PVLady

    PVLady New Member

    I totally understand isolation. Thank goodness, I am better these days but for about ten years I was so sick and rarely went anywhere. In the end I was completely housebound for weeks.

    I finally started getting out alone in my car and would take along a bag of whatever I needed to get through the day. (Water, meds, magazines etc) Every day when I could get up and dressed I would just go and sit at a public place for a few hours. I know it may sound so weird but somehow being around people helped.

    Sometimes I would just park in my car in a nice place (near the ocean) and read. If I needed to close my eyes and rest it was fine. Other times I would go to the local hospital and have lunch in the cafeteria. Then sit in a waiting room and people watch.

    Was that weird? Probably yes, but I needed to survive. I had to be in a place where I would rest, yet still see people.

    I must share here that my fibro was terrible and was progressively worse over a ten year period. In Nov 2006 I had my gallbladder removed due gallstones. Looking back I believe the diseased gallbladder was poisoning my body. It took about a year to feel better but after the surgery my body aches decreased dramatically.

    I have also been on a drug called Subutex for 3 years now. My pain Dr. has over 20 fibro patients on Subutex doing well. It is a mild opiate but does not have the side effects. You dissolve it under you tongue.

    The story is long how I got on Subutex but to make it short, a long time ago a doctor put my on MS Contin. I was on it 9 months and the side effects were terrible for me. Probably due tot he gallstones.

    Anyway, I was not in the mood to taper off MS Contin so the doctor put me on Subutex. It is used to prevent withdrawal symptoms when you stop opiates. The miraculous discovery was while taking Subutex my body aches stopped completely.

    I have been on the same dose of 16 mg for over 3 years. The only other med I take is occasional Tylenol. This drug saved me.

    Anyway, it is too bad more of us fibro sufferers don't live in the same town. We could help each other with these problems. I often thought it would be nice to have a social gathering for people with fibro and CFS.

    Just to allow people to get out and socialize.
  19. SolSerenade

    SolSerenade New Member

    "...docent at nearby museum."

    Good idea! thanks.

    best to you.
  20. Empower

    Empower New Member

    I TOTALLY understand. I can NEVER make plans for anything, so I don't.

    I just decided though that I have to do something. I am going to try to do little inexpensive things, like buy a ticket to the high school musical and take a class (2 hours a week) for 2 weeks. Both are very inexpensive. I may not be able to go when the time comes, but at least I won't be shelling out a lot of money for it.

    Going out to a cafe is good. No expectations. You go, get a cup of coffee or tea, are around human beings, and can leave whenever you want.

    I joined a book club that meets once a month for 1 1/2 hours. This is nice, again no pressures or expectations. I can be among the "land of the living" if I am up to it, and the conversation stimulates my mind.

    But I am in DESPERATE need of a vacation and change of scenary!

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