Loneliness Hurts

Discussion in 'Fibromyalgia Main Forum' started by TeaBisqit, Jul 23, 2009.

  1. TeaBisqit

    TeaBisqit Member

    We always talk so much about the physical pain of the disease, but for those of us who are mostly housebound, the loneliness itself is a horrible painful thing.

    It really hit me tonight how alone I am. I had a problem with a neighbor because they've been leaving an entire set of kitchen furniture in the hall of my building for two weeks now. And they were blocking my door to where I almost couldn't get out of my apartment. I moved them against their wall. They don't belong putting anything near my door. So, two hours later, I hear one of them come out of his apartment and he loudly says that whoever moved the chairs should mind their own business. I don't think he knew it was me or that I heard him. But it was my business that they were blocking my door in. I'm at the end of the hall, there is only one way out of here. And what they've been doing has created a firetrap for me. I was also scared the building's management would think the stuff was mine, and I think that's what these people have been trying to do. They had it spread out to look like it could be any one of three apartments. And I'm not letting them get me in trouble for their mess.

    So anyway, what really got me was, that I'm treated like a non person. Since they rarely see me, I just don't matter to them. So it just didn't occur to them that it would bother me to not be able to get out my door.

    This couple is nearly twice my age, they are in their 70's. They have a hundred times the energy I have. They have a full, active social life. People are always knocking on their door. They go to all kinds of social activities all day and into the night. They have an amazing full life.

    And here I am, half their age and I can hardly ever leave my apartment. I have no friends anymore because I'm never well enough to keep up a friendship. I have trouble just doing the small things I need to do to live. It took me all week just to be able to get the energy to take my garbage out tonight. And my lyme arthritis has been acting up so badly that I haven't been functional at all.

    It is so awful to have no one. I only have one local friend and her daughter has this disease and is very sick, so I don't see them much. One aunt out of state that I talk to once in awhile and an old family friend who has no understanding of this disease, so I don't talk to her much because all she does is tell me how wonderful her life is.

    Being this alone, year after year, it really wears you down. And it's horrible. People don't understand how bad it is to not be able to join things and go places and have friendships. And if I tell anyone, they stupidly tell me to join things. And it's like, if I could do that, I would already be doing it.

    I'm tired and I'm sad. Really, really sad. I don't know how much longer I can do this. I've had the disease for too many years now. And I've had to watch every part of my life be destroyed by it. I don't think there is anything crueler.
  2. skeptik2

    skeptik2 Member

    First, call your local fire dept and ask them to check out the fire safety of your bldg; tell them about the furniture blocking your only exit.

    Next, but not last, I feel for you. I am so sorry you are so isolated and alone. I live with two other people (a partner and a granddau) who have M.E. We live very quietly and peacefully together because each one needs serenity. Wel share all the work, making life much easier.

    Could you find someone to share an apt with? Is there a support group in your area? Or, if only close, but too far away, you could call the SG leader and ask him/her to ask around for a fellow FM, MS, or M.E. patient who would like to share, maybe a "roommates" apt?

    Anyone with a chronic illness would make a good roommate, if you take the time to talk to them on the phone, make sure they're not raving mad, go see where they live (neat, etc.), not obsessively clean, can be calm and serene and not excitable or loud speaking, you know what I mean.

    Call the United Way, ask if there are any SGs for CFS, FM, MS, Chronic Illnesses other than mental,etc....see what you can find.

    Put an ad in the local paper; ask for a fellow patient, give only phone number. Talk to anyone that calls many times. Check out family references, maybe a nurse reference where they see their doctor, ask them to mail you a copy of their last bank statement and driver's lic. to verify their identity, age, etc. If you work at it, it could work, ok? Maybe have someone with you to interview anyone you deem ok...

    You're not alone. We are here...can you go to chat? I just learned how, and can be in M.E. chatroom (very empty place for some reason; everyone goes to FM chat) from 7-8 and/or 2-3 a.m. if you're up those hours.

    Please don't give up; do you have FM or M.E.? Doesn't make any difference, I have both, for 21 years. Science is moving right along and we can't give up hope.

    Many hugs, a cheery hello, and hope to talk to you soon..maybe Fri. nite, 7 p.m, Central, in the ME/CFS chat room?

  3. FMsaddenedspirit

    FMsaddenedspirit New Member

    Good Morning TeaBisqit,

    I am so sorry you're feeling lonely . I was wondering do you have a pet ? cat or puppy ? I used to have birds , a couple of parakeet's , they don't cost much and are pretty easy to take care of.. they make great little friends andwill make you laugh, and can be trained to ride on your sholder. one of mine even learned to talk, he copyed our African grey bird . we called this little Parakeet Tweety . he would say " hi there, what ya doing " . just thinking a pet might help with feeling lonley

    I would be lost without my Little Pug Chato Bear. he is just so loving and gets me through many a day . , I no longer have the birds. I could not keep up with them and my pug.

    what you said about your neighbors being in there 70's and being able to do more than you ... boy can I undrstand that. I used to help my Mom and Dad with chores .. like yard, cleaning walls, flower beds ect.. now I have been grounded from doing any of this , as it throws me into a Flare and will be in bed for the next two days at least. Mom keeps her house so clean.. and she suffers from really bad arthrits in her knees. but still is able to get lots of stuff done. then my house.. I have so much I can never seem to get done, its sad. and is still very hard to acept . I am only 46 , Mom and Dad are in there 70's .. I just can't keep up anymore.
    but we have to listen to our bodies. so there are lots of things we can nolonger do . Lord knows I understand this and how hard it is.

    You know you always have us. I know its not the same . but at least we understand, and care

    I hope you feel better today.

    Take care my dear . Soft Huggles. ~
    Spirit ~

  4. rockgor

    rockgor Well-Known Member

    and frustrating, isn't it?! These DDs take so much away from us. My only
    social life is this board.

    I used to play cards on line, but my Alz prevents that now. Can't remember
    the cards anymore. And MSN has changed so I can't play there anymore.

    But maybe you could play cards? Are there any computer games on line
    where people interact?

    I used to go to my 12 step meetings twice a week for years, but now I'm
    only able to get to about one a month. That was also a good social outlet.
    people often met at a coffee shop before or after the meeting.

    I hope you can find something. Good luck

  5. Pansygirl

    Pansygirl New Member

    I'm sorry you are feeling lonely.

    Just wanted to send you a gentle hug

    and let you know that we understand and care .

    Hope you are feeling better today. Hold onto the hope that each
    new day wil be better.

    Take special care of yourself, Pansy (Susan)
  6. ladybugmandy

    ladybugmandy Member

    i feel the same way you do. if you would like to talk on the phone some time, please email me and we could exchange numbers: suebackagain123@yahoo.ca
  7. skeptik2

    skeptik2 Member

    and, Sue, tsk, tsk..email addys?

    Tea, I am so sorry I didn't make it to ME/CFS chat room as promised tonite; of course, the day was unexpectedly stressful, trying to make arrangements for my 21 y.o. grdau to get medical care, so as soon as I ate dinner I crashed royally.

    Please forgive me...

    I'll try to be there each night between 7-8, ok? Look for me and the other sweet people here...

    Hugs galore,
  8. isiselixir

    isiselixir New Member

    The lonliness is definitely a HUGE negative factor in this illness.

    Tonight I went out with my Mom (don't go out much) and we went for a drive along the coast. I was trying to focus on being happy about the drive but instead I had such pains just watching crowds and crowds of people hovering over bonfires ablaze. I remember when I used to go to bonfire parties, as a child, as a teen, and as an adult. I miss SO many things - being around large groups of people, dancing at clubs, sharing the joys and hardships of life with good friends. I mean, now I don't even really have joys to share! I don't mean to sound negative but I don't have a very active life and I'm finding there is less and less to share period. Part of me feels inspired watching all the beach folk in the electric night, doing their thang, riding their bikes, skating, frolicking, running around in their bikini's and beach garb... but inspired to what end? Inspiration alone cannot make me break out of my physical limitations. It just makes me yearn more and more to be free, which can then cause a cycle of disappointment and yearning which can seem to flip flop forever...

    Anyways, Tea, I feel you. I'm only 31 and my social life has become so minute, I can count the people I talk to on one hand. At least we have penpals, we have this board, etc. It beats nothin'. I totally get how annoying it is when people tell you to join things, I had someone tell me to just go RUN recently... the ignorance is disturbing but what feels the worst is that it seems like these people are insulting our intelligence or our ability to challenge ourselves, as if we haven't tried. It's like they are forgetting who they are talking to! & that hurts because we want to be known for who we are and understood for our condition and they way we handle it.

    Oh yes, one more sad thing I feel regarding loneliness is that since I rarely go out with people, when I do go out, I feel a sinking feeling within. This sinking feeling is a despair that hovers and is spawned from my inner knowing that this occassion, this event where I am with someone, is not going to last very long. I know I will soon be back with the realities of the illness which cause me to spend countless hours online, in bed, at home, by myself. It can be hard to savor the passing moments when we try to escape the aloneness and try to forget the illness.