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Socially isolated?

Posted , 9 users are following.

lisa52101
lisa52101

ive noticed when reading through conversations on here how socially isolated many of us are. I'm wondering whether it's been a choice to have a few good friends who don't always understand what we're going through, or that fibro has isolated us. We can't go out the way we used to and I know from experience that we can't plan anything because we don't know how we will feel. I know I'm far more isolated than I used to be.

4 likes, 132 replies

132 Replies

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  • Maggers
    Maggers lisa52101

    Posted

    Don't think I am isolated. I might not have caring neighbours but I work, walk the dog or rather throw the ball in the park as can't walk too far and compete in canine activities. Colleagues at work don't take it personally when I refuse evenings out they just accept if they want me to function the following day I have to go home and rest.  Sometimes I have to push  myself to get out like we all do but usually the effort is worth it even if there is occasionally a sprite payback.   I am still learning the art of pacing myself but I am determined not to become isolated.  Things done on the spur of the moment are often the best outings.  I know some of us are more affected than others but I want to continue using what I have before it goes completely. I am lucky that most of my friends are in different parts of the country so it is a case of just phoning each other or emailing so we keep in touch and only meet up very occasionally.  I can understand how easy it is to lose touch with people. I know if I did not work I would find it  hard.
    • lisa52101
      lisa52101 Maggers

      Posted

      Hi Maggers, I'm really pleased you managed to stay so socially included. I found it hit me hard when I gave up work. Try as I might I just couldn't keep up. I know I'm not as isolated as some on here but it's definitely a different kind of life than the one I used to have. I don't think it helped that for a long time I didn't have a name to tell people why I couldn't do the things I had done before. 

      Long may your health continue to keep you active. Gentle hugs 

    • Maggers
      Maggers lisa52101

      Posted

      I can imagine that stopping work totally alters your life completely which is why I struggle on and of course the fact that I cannot afford to give up work and consider the stress of absolutely no money would make me so much worse.  I am fortunate that my boss has not pushed me to give up yet and I hope the time is a long way off.

      Keeping up can be done in different ways, good old fashion letters, remembering birthdays, e-mails,skype. It really doesn't have to be face to face or going out and exhausting oneself. Just keeping in touch in these ways lessens isolation.   I have been ill since the 80s and only got a diagnosis 3 months ago but I cannot let fibro define who I am. I am incredibly stubborn.There have been days/weeks where I am bedbound but I bounce back eventually.  I am very fortunate that my friends have remained friends and perhaps distance is what has kept us together as we do not expect to see each other very often at all. Time will tell as a very good friend from hundreds of miles away is moving to within 10 miles of me. I wonder if we will see each other more often or just go on as before.  There are ways of making friends which will not cost any money - I used to be in a book club - meeting once a fortnight. We took it in turns which house to meet in. I did not know anybody at first we were just a bunch of people interested in reading. It was advertised in the local library.I have a friend with MS who helps out in a charity shop for a few hours a month or whenever she can which is more than acceptable to the charity and they are pleased to see her whenever she can make it. Take care.

  • kaz_40
    kaz_40 lisa52101

    Posted

    Hi lisa I think fibro has had a big affect on isolating us more. my friends dont understand what Im going through and they dont want to understand what Im going through. So Ive been lonely and isolate as they just cant be doing with how I am. so a part from husband and you lovely ladies thats all I have. we all have each other so thats a blessing something Im grateful for. gentle hugs hun take care here for yousmile
    • pam_87693
      pam_87693 kaz_40

      Posted

      I think you ARE in the USA, why don't you join a USA FB group, it's a much more personal way of chatting to others. I only use this to help UK citizens onto FB, as we all prefer FB
    • lisa52101
      lisa52101 pam_87693

      Posted

      Hi Pam, sorry but I definitely live in the UK. I'll look up the UK fab site though for sure 😊
    • kaz_40
      kaz_40 pam_87693

      Posted

      Hi pam I am a uk citizen and I live in the UK and always have neutral
    • pam_87693
      pam_87693 kaz_40

      Posted

      Then join FB it's free, start your own page, then ask for group British Sjogren's, it is a closed group, which means that your friends and family will see what you put on your own face page, BUT they will NOT be able to see anything you post in British Sjogrens, you will be able to see and say what you like without anyone NOT in the group seeing you. I am Pam Newman the admin. For British Sjogren's. Once you have joined FB ask to join and I will see your link 
    • TeresaJS
      TeresaJS pam_87693

      Posted

      I apologise for intruding: I don't see it that way. I've lived in several countries and for me borders are about politics not about support, knowledge and most certainly about disease. However I do understant how some people have a different mindset.
    • Maggers
      Maggers TeresaJS

      Posted

      Agreed Teresa - borders should not separate.   Support and understanding should know no boundaries. Cultures and opinions should be respected but equally we should be able to discuss and challenge the idea but not the person. How else do we learn tolerance and understanding. There are many different ways to a single answer.
    • kaz_40
      kaz_40 Maggers

      Posted

      well put maggers totally agree with everything you have said 
    • Maggers
      Maggers

      Posted

      It is just not social isolation though is it.  We are isolated and excluded in many ways. This was written when my mobility was at its worse.

      Oh to be Average

      If you are not average

      The world doesn’t cater for you

      Extra large or very small

      Short  or very tall

      You’re on your own.                                                        

      Now provided you are mobile

      The World your oyster is

      No need to worry just off you go

      Enjoy your visiting.

      Just give a thought next time

      You bound up the steps to some attraction

      Stately home, or theme park, zoo, gallery or museum

      For those of us less able to use those pesky steps

      Not stairs to fun and learning but

      A barrier, a brick wall,  a door slammed in the face

      Of fellow humans who just wish to have the same as you.

    • TeresaJS
      TeresaJS Maggers

      Posted

      Oh, Maggs you are unstoppable! There has to be a pupose for this too cheesygrin
    • kaz_40
      kaz_40 Maggers

      Posted

      yet again maggers youve hit the nail on the head. well done to you smile
    • kaz_40
      kaz_40 Maggers

      Posted

      hurry hurry dr dr midwife ambulance any body maggers need helplol
    • Maggers
      Maggers kaz_40

      Posted

      Sorry too late think it is terminalrolleyes! Am losing the will to put pen to paper-

      bleep................................lol

    • bronwyn97278
      bronwyn97278 sharon53053

      Posted

      Hi Sharon; I'm not either..........from listening to those who are, I have always felt that There is Too much Gossip...........don't want to get Myself into trouble, as others have done???? cheesygrin.....Bron
    • Maggers
      Maggers kaz_40

      Posted

      Just call me Phoenix.  I'm back brain working the rest is a bit iffy!
    • kaz_40
      kaz_40 Maggers

      Posted

      what are the chances of us resusertating you and you doing another poem?smile
    • Maggers
      Maggers kaz_40

      Posted

      Don't want to bore the pants off everyone! Perhaps tonight if sleep does not come I might be inspired.  Right now I am shattered. Heat is no good for me particularly as I am photosensitive.    Run out of factor 70 now having to use factor 50 so now sporting a lovely rash - look like I have measles!
    • kaz_40
      kaz_40 Maggers

      Posted

      You wount bore the pant s off us, Im good with heat I stay out the sun its never agreed with me just makes feel quite si.k wount spell it out in case any 1 about to have tea? hope you do mange to sleep tonight? Im hopeing I do toosmile
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