Discussion in 'Fibromyalgia Main Forum' started by bwitched, Mar 24, 2006.

  1. bwitched

    bwitched New Member

    Hi there....I'm new to this message board. I just joined about 2 hours ago. I've read many of the messages and replies and feel like I've found people who understand me...Finally!

    I'm just so very lonely. I used to be so active and involved in so many things. I felt so sure of myself and so accomplished. Now I'm reduced to being homebound and weak. I had many friends, both at work and social friends, to do things with and talk to. Since I've gotten so ill and haven't been able to attend the parties or go anywhere, none of them call me anymore. I've called a few of them, but they don't return my calls. Maybe they don't know what to say or are uncomfortable. I know everyone has their own lives and families. I understand, but it still hurts.

    I've discussed my loneliness with my husband. He usually gets very defensive and says that he is home more than most husbands. He is home alot, but even when he's home he's not "really here" alot of the time. He's outside doing yard work or something else, and when we're together at night he is tired from working and can be very distant sometimes. He thinks that I want him here physically all the time, but that's not what I want. I just want to connect with others again, and I want more than anything for him to be the one that I connect with most of all. He takes it that I'm complaining about him and blaming him for all of my sadness. He says that I take everything out on him because I have no one else to take it out on. So, he suggested that I find a support group and find "someone else" (his words) to talk to.

    He's not a bad man. I'm not trying to imply that at all. I love him. We just got married a little under 3 years ago. Right after we met my symptoms got drastically worse. Alot of men would have run away, but he loves me and he stuck by me and asked me to marry him. He also does alot for me like running most of the errands, cooking almost every night, taking me to my many medical appoinments, etc. I feel that God put him in my life right at the perfect time when He knew I would need someone. Unfortunately, we argue alot. I'm just so angry at having this illness and so darned lonely. I even have dreams at night where I have this feeling of complete and utter loneliness. It awakens me like a nightmare would.

    I just feel like such a bad wife. I know he does alot for me, but I want for him to sacrifice a day once in a while to just hang out with me when I'm in a flare up. On those days I'm usually lying on my bed watching movies with a heating pad on my back and the curtains drawn to keep the light from hurting my head. I've asked him to hang out with me and he says that he can't stand being in a dark room all day. I feel resentful of the fact that he can go fishing on average of once a week, but has only hung out with me as I've desired maybe 5 times in the last 3 years.

    I just feel like such a burden and don't know how to remedy the loneliness. I try to explain how I feel, but he gets defensive and we end up arguing. He just does not understand, and I fear that if I continue trying to get him to understand how I feel it will destroy our marriage. I would go to counseling, but we cannot afford it right now with the financial strain this illness has put on us. He suggested that I go to a local support group, but the closest one is a 35 to 40 minute drive, and I have a very difficult time riding in the car because it makes me nauseated, dizzy and anxious. His answer to that is that all the people who are at the FM support groups feel bad but that they make it there. So, once again I feel misunderstood, lonely and accused of not having the initiative to fix things myself. It makes me feel worse about myself.

    Am I asking too much from him? Does anyone have any ideas to help me with the loneliness? I would greatly appreciate your suggestions.

    Thanks for reading! Sorry for the pity party!
  2. claudiaw

    claudiaw New Member

    Your story could be mine, with the exception of your husband. Mine has responded differently. He is very supportive, although signs of stress are showing, he is struggling with anger and depression.Your husband may be as well and not know it.This has been a huge change for me and my husband. You go through a grieving process of losing who you use to be.

    I think you will find many people here who will relate to you. Everyone one can relate to at least one thing you experience.

    I too am pretty much homebound, with this being my main source of interacting with people.

    Welcome, you'll like it here.;)

  3. Cromwell

    Cromwell New Member

    The lonliness is a huge part of this DD. My DH is disabled so home all the time mostly, so I am OK, and he is vey supportive.

    I think we all miss our former selves so very much.

    Gee, I just talked to my older brother and he told me he has reflux for the first time in his life and I said now he knows what I have lived with for 25 years, as gastro can be a big part of the many symptoms, plus UTI's, vertigo etc.

    It is hard to maintain friendships as people don't understand.

    I am luckier than many as my FM comes in big flares, yet they are getting closer together and lasting longer.

    The biggest issue for me is the lack of interest by the medical community and I live in a very upscale Ivy League University town, and would have thought things may be different here.

    You won't be lonely on the boards. It is my lifeline to people who care, but also someone to talk with.

    Love Anne C
  4. Josie39

    Josie39 New Member

    Yes, All can relate in one way or the other and MANY, with husbands. I have been married uuuh... all my life, to the same man and I was dxd with this 15 years ago.
    My husband is such a good man but yes, he too is beginning to *show signs* of distress.
    Your husband loves you I am sure-or he would never had married you.
    ONE bit of advice to you sweetie ...
    ALWAYS keep the lines of communication OPEN. Tell him what is in your heart, always.
    When you go to your doctor, ask him to go IN with you so that the doctor can talk to HIM also.
    I TRULY believe that our loved ones MEAN WELL, they just cannot understand WHAT is going on! Especially when they have seen the *OTHER* person that we used to be.

    Hang in there friend and know, you are NOT alone-you will find that there ARE others that are hurting too and we can always LEARN from one another.
    Remember too ...
    THIS is a place where you can VENT and no one will object!

    Love and hugs!
  5. rockgor

    rockgor Well-Known Member

    a lot including friends. This board is a big help tho.

    Is there another group you could try that's closer? A 12-step group. I got a lot of help from one called Emotions Anonymous.

    Any other kind of group like a book study or church group.
    Of course it's always unpredictable how we'll feel at meeting time.

  6. kasilou

    kasilou New Member


    We all go through very similarities with our spouses, family. It is so hard to understand myself so I'm not sure others can understand.

    I had my SSD hearing yesterday and not sure how it went(probably a denial) anyway when the judge asked me what a day in my life consists of, I began to cry-hearing myself say out loud what I now do and realizing how active I used to be brought me to tears.

    Appreciate the comment that " we have to grieve over what we used to be." That must be me right now.

    I hope you get some comfort on this message board-I think its great. We all understand since we all are there!

  7. halo52208

    halo52208 New Member

    That is how much I can relate to you. Except I am not home bound. But I can only work part time because my feet can't handle it to long. I miss my husband, like you when he's home it's like he's not. He does all the cooking, what a sweet man. But like tonight he is moody because of our money crisis. He works overtime to pick up the slack and yet he's pay check is gone before he get's it. So that puts a big strain on our marriage.

    What helps me is this board. I don't know how I have gotten by without it all these years. I just joined a few months ago also.

    So welcome and don't be afraid to vent here. Sometimes that's what we need most is to vent our anger without it hurting anyone, and this is the best place to do that.

    Blessings, Halo
  8. dejovu

    dejovu New Member

    I'm glad your here. Sounds like you've held this in way to long. Feel free to get it out and then it will be easier to deal with one issue at a time. And we'll be here for you. There is much strength in numbers. De
  9. hope2001

    hope2001 New Member

    Many of us could have written your letter. I hate that you are going through that. I understand about wanting to connect with your husband on a spiritual and emotional level. I feel that need with my husband also. I think they feel attacked when they think we are telling them they aren't "enough". When what we really mean is we love them so much that we want "more" of them.

    I wrote the following a while back because like you, it seemed like many of the postings I read on this site seemed so in sync with what I have gone through and feel. Many have copied it to show to their familes (I did) and doctors to help explain their feelings (or to prove that they aren't the only ones feeling that way.

    Here it is:

    I’m not trying to speak for everyone, but from my own perspective I can tell you what I NEED from my family and friends and so seldom get.

    I NEED TO BE SHELTERED dropped off at the curb and told, don't try to do that, let me help you.... There is so much going on in my body that I have no control over and it does get overwhelming and exhausting to my body.

    I NEED TO FEEL PROTECTED even though I can't be safe on the inside at least I can feel if ANYONE or ANYBODY wants to "get at me" then they are going to have to "GO THROUGH" my protector.

    I NEED TO FEEL CHERISHED as if my family or friends feel they are blessed for each day we have together, LIFE IS SO FRAGILE.

    I NEED TO FEEL CARED FOR when I am feeling sick everything is hard to do, even dressing and I WOKE UP WITH ONLY 2 MILES OF ENERGY INSIDE OF ME AND A NORMAL DAY TAKES 25 MILES WORTH. I need someone else to say, "let me empty the dishwasher", or “so what do you need me to do?” I FEEL GUILTY when I can't do the daily inconsequential details that are the GLUE HOLDING THE HOUSEHOLD INTACT.

    I NEED TO FEEL RESPONSIBLE I know the latest research, I am on the internet each day to learn more, please don't say B-12 might cure me, I’ve tried the miracle cures and read the articles. DON’T YOU KNOW how DISAPPOINTED I GET WITH MY OWN BODY for NOT COOPERATING?

    I NEED TO FEEL FORGIVEN for NOT being a full person (in the world's view). You may not hold a grudge, I know it’s hard on you to pick up slack, but I don't FEEL FORGIVEN, I feel guilty.

    I NEED TO FEEL LIKE PART OF A TEAM working toward a common goal (our life together) and it is OK if my main contribution is SPIRIT.

    I NEED TO FEEL INCREDIBLE I get angry sometimes seeing a tennis mom sachet into lunch with the girls after a manicure. I WISH I had the energy to even have a manicure, let alone waste precious energy on such frivolous pursuits as gossip over lunch and judging other women's clothes and homes and accomplishments.

    I NEED TO FEEL AFFIRMED So many people scoff when I can't "Do just this one little activity, and it IS EXPECTED." I get tired of feeling guilty for not BEING ENOUGH to people that I don't care about in the first place. When I rant over the injustice of my illness, don't try to talk me out of it, or encourage me, just say "I KNOW, IT ISN'T FAIR, YOU DON'T DESERVE THIS"

    I NEED A FRIEND who is there for me on the good days and there for me on the bad days, too. I get left out of a lot, because I go for periods of time when I am unable to do much, they think I probably can't participate, so they forget about me, or just don't even invite me. It is LONELY being ill over a long term.

    I NEED TO BE ENCOURAGED The thought of being sick like this for the rest of my life INDUCES WAVES OF PANIC. It sometimes seems like a life not worth living, the quality is so poor so much of the time. I’m a Christian, I have great faith, but it can be overwhelming, especially when it’s implied "if your faith were greater, or if you would just DECIDE not to be sick....." We HAVE ALL TRIED THAT - it doesn't work.

    I NEED TO BE PRAYED FOR Frankly sometimes in the middle of the night when everyone is sleeping soundly and there are only the creaks of the house for company....I'm SCARED, REALLY SCARED. I wonder who will remember me when I’m gone and if I’m making any sort of impact on the world at all to validate my life. REALITY looms large and feels ominous. It seems like I’m PURSUED NIGHT AND DAY BY A STEALTHY UNSEEN STALKER, who knows my every move. It would feel wonderful to really believe I am actively prayed for.

    I NEED TO BE ANTICIPATED if I am sick in bed, know that I am dying inside, because I am neglecting things that need to be done, and the PRESSURE AND STRESS TO GET WELL is VERY GREAT because I know when I do get out of bed THERE WILL BE EVEN MORE RESPONSIBILITY WAITING FOR ME than BEFORE I wore myself down into a state of exhaustion and bedrest. Just come on over and SILENTLY DO SOMETHING/ ANYTHING, and don't even expect gratitude, I may not even realize, but when I get up a lighter load will be blessed.

    I NEED TO BE NURTURED I just got an email requesting a group of us to get a nice meal up for someone, because she is down with the flu, poor husband for taking care of her! I LIVE WITH THE FLU EVERYDAY OF MY LIFE! The last time a a meal was brought to us, was a year ago, after I had been extremely sick for 6 weeks. Before that it was years. No one even THINKS of reaching out to a chronically ill person, because they might be EXPECTED to do it monthly or because they are so used to you being sick, they don't even realize sick MEANS SICK. Our families suffer too, and would like a warm meal, as much as the lady who just had a baby or the woman with toe surgery.

    I NEED TO BE APPLAUDED give me CREDIT for being a SURVIVOR AND A THRIVER. TO KNOW that there are women out there who have never had more than a broken acrylic nail and an unreliable housekeeper, is infuriating sometimes, especially when it’s implied they must be better than me or I wouldn't be sick all the time and unorganized and uninvolved. I know we don't know what people's lives are like behind closed doors, but I would love, have prayed, to JUST BE SHALLOW FOR A DAY and take every STEP, BREATH AND ACTIVITY FOR GRANTED without deciding WHICH few things I could do today that will make a difference over the next 30 years (it is almost always be a good mom and wife).

    I NEED TO BE RESPECTED I am intelligent, I am attractive, I was once beautiful.... It is depressing to swell into a stranger because of meds and to have no clothes that fit attractively. I'm too tired to shop for them, and if I did shop for new clothes, I wouldn't have energy to wear them anywhere anyway. I CAN DO THINGS, I just can't prove it very often. I AM SOMEBODY not a disease, but the disease overshadows my chance TO BE MYSELF.

    I NEED TO FEEL NORMAL Sometimes it feels like a BOLT OF REALITY HITS ME, as if I JUST REALIZED I am not a healthy person for the very first time. It doesn't seem real or possible for a minute, almost shocking. I can't do everything, but sometimes it would be fun to just play with no worries. HELP ME ESCAPE for a few hours to a play or comedy club, somewhere different where no one knows and I can forget.

    I NEED MY DIGNITY It’s important for me, with so little control over anything else in my life, to at least have my dignity. Please DON'T SPECULATE ABOUT ME with other family members or friends and compare notes about my progress or lack of progress or determination or mindset, or your opinion of what I could, should or ought to be doing differently. It is easy to be smug when you aren't wearing lead ankle weights each day and trying to walk through neck deep water. This is what it really feels like. Everything is ten times harder for me than it is for you.
    I NEED TO FEEL ACCEPTED AND INCLUDED not like a project to be SCRUTINIZED for worthiness and validity. I’m not going to doctor after doctor and struggling to survive for ATTENTION. Believe me, if I wanted attention, I’m bright and capable enough to get it in other ways. I’d rather be noticed for my good qualities and accomplishments. Even if I were getting attention, which I’m not, it certainly isn’t worth all this seclusion and suffering. REALLY who WANTS to have medical tests run and spend travel money on medication?

    Not every day is like this, there are good days, and that is what makes the bad days even more depressing sometimes, because you realize what you are missing.
    DON’T TALK, JUST DO. Actions speak louder than words. You have the freedom to buy a plane ticket and go anywhere in the world and enjoy it. You can take a job, or join a club, or garden or take a hike or run in to a new shop or.............anything you decide to do on a whim. I have to think and plan and strategize. I am afraid to make plans because I really don't know if I will be able to follow through on them. Even planning takes energy, which may not leave enough energy for the actual doing. YOU PLAN SOMETHING and pull me along, with no responsibilities and NO GUILT if I can only do half of the plan...at least we will have done something.

    Brigett (Hope)

  10. cjr2003

    cjr2003 New Member

    Hi :>) This really hits home for me - what you wrote and shared with us all. I too long to "connect" with my husband more emotionally. I really really need that connection and have been analyzing our relationship in my head lately trying to figure out where that "connection" has gone to lately. I feel I have a truly wonderful husband, I do. But, sometimes I truly wonder if he sees the "real me". He is so busy working so hard to pay for our living and my RX's/dr. bills and his head is filled with so much from work, that by the time he does get home and gets to sit for a few minutes, he is so tired, that he either goes on to bed, or gets very grouchy lately from all the stress of working so hard and worrying about the bills. I long for a deeper, more emotional connection w/ the man I love and married, but, sometimes, I really wonder why he isn't longing for that feeling too? I think for the first time in my marriage I am seeing how different my husband and I are in the aspect of emotional depth. Not that my husband doesn't have depth; we just look at things/life/feelings differently. He was raised in a home where his mother and father weren't very affectionate at ALL, and, to this day, they have a very dry relationship that lacks depth and compassion and affection and honestly is quite sad in my view. I think that my husband hasn't been taught this emotional depth and how wonderful it can be. But the problem is, that , now that he is 41, I fear it might be "too late" to change him. His personality is so set, you know. This is the first time in my marriage that I really see this difference in he and I and it has weighed heavy on my mind lately. How do I teach him emotional depth? I am not sure that I know . . . But, I just wanted to comment on your post that I really do sympathize with how you feel, and I don't think it is asking too much for him to spend some quality time w/ you. My husband is much like your's and can't stand to sit in a room w/ the curtains drawn either. He cannot sit still for more than an hour. He has to be out and about busy working and doing and going and getting him to just relax and be w/ me sometimes is a task. Sometimes I think he is a workaholic! But I love him so, I do. But, things are so complicated by my illness in our marriage it seems. I sit and wonder why this is the first time this has "hit me" and made me ponder? LOL Carla

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