How do you manage when you feel like the only one?

Discussion in 'Fibromyalgia Main Forum' started by bees, Mar 21, 2003.

  1. bees

    bees New Member

    I'm having as really hard time at the moment because i've been too il to do anything for over two weeks. It's making me feel very lonely as I don't like talking to friends and family about how I'm feeling. Also I don't have the energy to.
    People keep asking me to do little things like fetch things from the kitchen and I can't stand it- they can see I'm not up to much! How do other people deal with this? I'm tempted to sit alone in my room to get away from everyone but I know that won't really help. I did that before and felt even more alone as I was secretly hoping someone would come up and talk to me.
    I feel so alone, no-one seems to realise how much I am struggling what can I do?
  2. lin21

    lin21 New Member

    Hi,

    I'm pretty much in the same boat you're in. I was diagnosed in November and ever since life has been really tough not only for me but for my family.
    I cannot do much of anything.
    When I feel down or alone I come to the board. At least I know there are people here who truely care and listen.
    My friends have distanced themselves from me since Christmas because i couldn't travel to visit them. I still talk with them but not as frequently as before. When they ask me things I tell them but I don't talk about my illness otherwise.
    Each day I pray it is going to be better than the last but I know I will never be able to be the person I was.

    Hugs,
    Lin
  3. LadyCaskey

    LadyCaskey New Member

    Hello Bees,

    I have been away fromthis board for almost eight months or so now. I stop in occasionally to read post's, but this is my first reply in quiye some time! So, since we don't know eachother, allow me to introduce myself. My name is Stacie.
    I was lured in by your message for a few reasons.
    I want you to know that you are not alone. We all feel this way from time to time. Our friends and family don't understand how we are feeling, how can they? They try to be sympathetic, but really, they can't understand how much our bodies, minds and spirits hurt.
    Even on the days when you feel okay, it's just that OKAY. You may not be bed ridden that day, and that may give the impression to some family members that it's a good day, and a good time to ask you to do things for them, and quietly we do them, and moan about it under our breath while we ache the whole time!
    Since outwardly we do not look "ill" or "disabled" even those closest to us often forget that we have limitations beyond what we look like we are capable of, and they do not understand what we do today, we will pay for tomorrow or in the days following.
    As far as wanting to shut yourself off.....I say do it. But not for long. But, give yourself a little quiet time to vent to yourself. Give yourself a little down time to reinvent you for the day as much as possible.
    It may be to, (I know because I go through this)when you are in your room alone, family members don't come to bother you assuming you must need rest. As this may be the case sometimes, or more often.....try making the announcement that you will be in your room if your needed, and leave the door open.....it's always enjoyable to have people stop by just to check in :)
    Hope you get to feeling better soon....
    Stacie
  4. bees

    bees New Member

    It's hard seeing everything happen in front of you isn't ot? A few of my friends are drifting away from me and I can see it happeing but can't do anything about it. Do you have CFS of FMS? I have had CFS for two and a half years now.

    Do you know why you don't talk about the illness with them? I do the same but I don't know why, when they ask me I just brush over it and go into no details
  5. bees

    bees New Member

    Thanks for replying! Since we're introducing I'm Barbara, Hello.

    It's hard because I know I'm not alone really but I really feel like I am. I haven't seen my boyfriend for two weeks and I just feel like everyones going to get bored of me and move on (a few people have started doing that recently)

    I'm tired of explaining how ill I am, I think my family should be able to tell sometimes. Also I find it hard because I look so well, even my skin is in good condition but inside I'm tired aching and truly fed up. It's so hard I can't always see the point in me.
  6. AmieRock

    AmieRock New Member

    I don't talk about it...oh I've tried, but I feel like they just think "Yeah, right, you look fine" and go off into another zone thinking to themselves "You're just lazy" or something...

    And going to the bedroom to have a pity party for myself doesn't work because then I'm bombarded with everyone thinking there's 'something wrong' like I'm mad at them or something. I try to say I'm just tired and want to be left alone and they have LITERALLY each grabbed a leg and tried dragging me off the bed to go do something. All while yelling "Get up, quit being a party-pooper!!!"

    So, what do we do?

    Love,
    Amie
  7. bees

    bees New Member

    It's hard isn't it. That must be awful when they drag you from your room.
  8. DebP

    DebP New Member

    How do I manage??? I come to this board for support, and it usually helps me. I hope that it helps you also.

    Love and Peace,
    DebP
  9. Hippo

    Hippo New Member

    There are several reasons I don't discuss my health much with people. My SIL and MIL are two of the worst. Over the years, I had trouble finding a diagnosis. This led them to believe that my health problems were imaginary. Finally when I told my SIL my diagnosis of CFS/FM, she said, "Oh, I've never heard of that," implying that if she hasn't heard of it, it isn't real. In an attempt to clarify things, I let her read two of my medical reports (the two shortest and least technical ones). One of the reports even mentioned that I had been subjected to humiliation by certain physicians and family members who didn't believe my condition was real. She still doesn't get it. I truly wish that every non-believer could get this DD for a month. Hopefully that would enlighten them. Another reason I don't discuss it much with people is that they don't want to hear about it. Our lives are so consumed with our illnesses, and healthy people get tired of listening. I think coming to this board is one of the best things you can do to feel like you have some companionship when you feel so alone.

    Hippo
  10. catgal

    catgal New Member

    Hi Bees~~I am 53 and have had FM/CFS since I was 15. I was born with severe asthma/allergies & IBS. Now, I also have degenerative disc disease [ddd] with multiple back problems along with nerve damage in my shoulder & neck all of which is extremely painful, plus osteoarthritis, psoriatic arthritis, and rheumatoid arthritis. I am my sole financial support so I HAVE to work, but can only work part-time. Infact, I am home from work today sick with asthmatic pneumonia which has thrown my FM/CFS, back problems, and arthritis into flares. And, I always feel bad about missing so much work. I drug myself to work this week, but just could not make it today. I was filled with congestion, exhausted, and every part of my body felt like it was on fire.

    I am always so saddened to hear of someone so young like you having to deal with FM and/or CFS. You have so much life to live, and it is very difficult to live life the way you want to when you feel so disabled with these illnesses.

    And, it is a process to learn how to cope and deal with our sickness. And because people who don't have it--don't understand--it can leave you feeling very isolated, lonely, misunderstood, and abandoned. That is one of the reasons for having a Board like this where we can come, talk, vent, cry, share, laugh, and be with others who know just how we feel, and what we're going through.

    Our family and friends don't see how we can look fine, be able to do things yesterday, but can't today. It is an invisible, mysterious illness to them, and of course--one they don't want to hear about all the time. So, we are left to find our own way through the maze of such a debilitating illness. Just look at how large and populated this Board is. But it is a magnificent support system available to us day or night. There is usually someone online here even in the wee hours of the morning when you can't sleep. So, you are never truly alone.

    Just like it is agrivating to you for people to ask you to fetch things for them when you are not feeling well--I also have to deal with my man who wants to go places and do things from Friday after work to Sunday evening--even though he knows I don't feel well. But, he shouldn't have to be a prisoner of my health problems--he has a right to have a life with some pleasures and activities. And, he doesn't like to go off and leave me alone, so I try to go with him as much as I can--even when I don't feel like it. But there are times I have to say "no...I'm just not up to it right now". And learning to say "no" takes practice, and this sounds like something you are going to have to learn when family members want you to fetch something for them--or do & go when you don't feel up to it.

    People who have known us before our illness, still expect us to be the person we were before...but we're not--and they haven't adjusted to that yet. We can't function like we once did, and that is a loss & grieving process that all of us go through from time to time throughout our illness. And sometimes we must battle with the depression that we often feel as a result of our illness.

    I would encourage you to come to this Board and visit as often as you can; I find that journaling--writing out my thoughts and feelings is a great relief & release; it allows me to do alot of mental and emotional housecleaning, and it is also provides a record of our good & bad days, meds we've tried, doctor appointments and how that went, often shows me a pattern of my ailments and things that trigger flares, and also serves as my memory bank.

    Call friends when you can and try to keep in touch with at least one good friend. You don't have to talk long, just call to stay connected and not feel so isolated.

    Find a hobby or two that you can enjoy that doesn't take alot of energy. Read and educate yourself as much as you can about your illness and stay updated on any new medical breakthroughs that might help you.

    Discover things that nurture and pamper you--and indulge yourself. I have a *Comfort Box* that I made (or any box or basket would do), and I enjoy finding goodies to put in it for those bad days when I am sick in bed and need a lift. It is filled with "Special Treats" such as an expensive candle that is higly scented; essential oils & delicate fragrances for a soak in the tub; a good book I haven't read; a CD I haven't heard; delicious goodies I don't usually eat; inspirational tapes; a beautiful, soft, "Healing Gown" and plush pair of fuzzy "Healing Socks" that I only wear for times like these, and any other comforting & nurturing treats that I pick up from time to time when I can afford them. And on those black days when everything aches, and I down, blue and alone....I have an emotional first-aide station right in my Comfort Box to help me feel better.

    And even though I am 53 and have all these ailments and am forced to work for my financial survival....it is also a Godsend in a way because it keeps me connected to the outside world, to being around other people, puts structure into my life, and helping others enables me to feel that I am contributing and still in the game. Is there anyway you could find a part-time job--maybe just a few hours a day or week that would get you out of the house? Or do some volunteer work you might enjoy where you can go at your own pace & time. You are far too young to be a shut-in. Even though there are days I wish I could stay home from work--I notice that when I get there, start getting around, talking to people, and being more active....that I begin to feel better physically, emotionally, and psychologically. I think if I didn't have my work and just stayed home everyday that I would just dwell on my illness, feel isolated, and become depressed.

    I'm sorry you have felt so bad these past two weeks, and I hope you get to feeling better soon. It is essential to learn how to put some Life into your life as much as you can. It is up to each one of us to enhance the quality of our lives as much as possible. Plant a garden at your own pace; sit outside and put some sunshine on your face; redecorate your room so it can become a little "Paradise Sanctuary" that makes you feel comforted, dreamy, and brightens up your spirits; play cards or games online with other people; go to the library or bookstore and read inspirational, educational, or humorous books; get out and walk for the fresh air and exercise; set some small goals for yourself that can give you a sense of direction and accomplishment; take a class in something you've always been interested in. I recently took an evening class in basket weaving and have made some gorgeous baskets that I'm excited about filling with Wonderful Treats for a "Comfort Box--Comfort Basket" to give as Birthday & Christmas presents. I've already given two away as Birthday gifts {all filled with Special Goodies that I knew each would like), and they went crazy over them. And other people who saw them have called and asked me to make some as gifts for their friends & family. I think it could almost turn into a business if I wanted it to. You could put an ad in the paper for people with chronic illnesses and start a support group. And unless you are bedridden or having a really bad day....do something, anything that will help you feel more alive, more connected, and less lonely & isolated.

    Also, if you aren't already seeing one, many of us have found that seeing a good therapist for support, to talk over our issues with, to help us deal with the depression/frustration, grief/loss & anger that comes around from time to time, and to help us learn how to cope with our illnesses and deal with family, friends, loneliness & isolation has been a great source of help and healing. A good therapist can make all the difference!

    Others will be along to give you some ideas about what they do. You are not alone. We are all here for you, care about you, and know what you are going through. Take care, and I hope you are feeling much better soon. Blessings, Carol....
  11. lin21

    lin21 New Member

    Hi Bees,

    I just don't want to bring it up to my friends, if they ask I tell them what's going on. To tell you the truth I haven't seen anyone including family since before the holidays and really don't care of I see them again. Very few call to see how I am .
    Hang in there, it has to (I pray) get better.

    Lin
  12. dacer

    dacer New Member

    THATS THE SUBJECT WE ALL FIND THE HARDEST I THINK TO DEAL WITH. A COUPLE OF WEEKS AGO, MY HUSBAND WHO IS TOTAL DENIAL ABOUT ME BEING ILL WITH CFIDS AND FMS, SAID YOU NEVER USED TO SAY I CANT AND NOW YOU SAY IT ALL THE TIME, HE WAS SO ANGRY. THE GUILT CAN ALSO GET YOU, REALIZE YOU NEED TO RELEASE THE GUILT YOU MAY HAVE. TRY AND FIND A BALANCE. FIND YOURSELF AGAIN, WICH IS SO HARD TO DO AS YOU ARE CHANGED FROM THE PERSON YOU USED TO BE. WE ALL ARE. AND TELL THEM TO FETCH FOR THEMSELVES YOU ARE NOT A DOG. THEY HAVE HANDS AND FEET, QUIETLY POINT OUT HOW YOU FEEL EVEN WHEN YOU ARE REALLY ANGRY THAT WAY YOU WONT STRESS YOURSELF OUT HOOPEFULLY
    DACER