I miss my life--grieving and the different stages

Discussion in 'Fibromyalgia Main Forum' started by griswoldgirl, Mar 6, 2003.

  1. griswoldgirl

    griswoldgirl New Member

    I have been in quite the rut lately. My life right now is 3-4 hours a day of rehab exercises for my ACL surgery. It seems all I do is exercise and ice, exercise and ice and I am board to death with reading, television etc. I feel sad most of the time, not depressed just sad and disconnected.

    I went to a new board for Knee surgery patients and got told off because I am too senendary. I need to get up and do more. More? They do not understand fibro so I did not take it personally. I was so proud of myself because I actually went grocery shopping yesterday without the electric chair and carried groceries up the stairs and lived to tell about it at 5 1/2 weeks post op. What I got back was a girl telling me she was running through the airport at 4 weeks with luggage and there is something wrong with my protocol from my PT and I need to get off my a**.

    I saw a thing on the news about grieving and the stages. This was pertaining to grieving over death or over any loss such as illness etc. It made sense. Here are the stages they gave:

    1)feeling the pain
    2)accepting the pain
    3)withdrawl
    4)reinvesting in yourself

    I feel I am somewhere in between 2 and 4. I have had to accept so many different types of pain on top of the fibro from all my surgeries in the past 3 years that I feel I keep having to start all over again and again in the process.

    I am reinvesting in myself by doing my exercises even when I feel I cannot get my head off the pillow. However, I need to study for my ultrasound boards and cannot seem to pick up the book. I am very withdrawn from my friends, family and this board as a matter of fact. I used to sit here every morning with my coffee and I do not do that anymore. I am lonely and feeling very disconnected.

    My husband is scared that I will never get myself back and if I even mention something negative about my recovery he goes off on how if I think it, it will be. I used to be able to talk to him about anything. Right now the things I want to talk about are not so positive so I just have turned to being quiet most of the time which is so unlike me. My best friend is in the Police Acadamy and is so stressed and studying all the time so I do not burden her with my stuff right now and since out of work I cannot afford to go to my therapist. I write in a journal and that helps some. I figure this to shall pass--EVENTUALLY--I HOPE--DEAR GOD!!!!! I have always been so antimated and so alive. Lately I am alone most of the time and don't feel like talking to people most of the time.

    We all go through seasons in our lives. My season has been about 3 1/2 years long. I quess I could pretend I live in Alaska where there is only one season-LOL Still have my sense of humor.

    Just wondered how many of you are grieving for your old lives, the old you. Tell me your stories.

    Thanks for listening as always--

    cathy
  2. Mikie

    Mikie Moderator

    These stages deviate from the traditional grieving model: Denial, Bargaining, Anger, and Acceptance. I'm not sure about the order of the Bargaining and Anger; I may have them backward. I don't think I went through the Bargaining Stage, but I was in Denial for years before admitting something was wrong. I have arrived at Acceptance, but still have some Anger which rears its ugly head from time to time.

    I found Grief Therapy very helpful for me and highly recommend it, not only for us, but for our families as well. Men, especially spouses of women with our illnesses, often get stuck in Denial and Anger.

    Our progress isn't linear. We can progress and regress and have one foot in Acceptance and one in Anger at the same time. After a while, one can recognize which stage we are operating out of and make sure it isn't keeping us from making good decisions and living life more fully.

    Love, Mikie
  3. Peace7

    Peace7 New Member

    Yeah I miss my old life too.

    I miss being able to work

    I miss being able to drive.

    I miss having energy to do things or when I do have a little energy I miss that I can't just go again.

    I hate having to limit myself. Well, there's only enough energy for one store -- so it'll be groceries.

    But, I have a sweet husband who doesn't mind pushing my new wheelchair.

    Cathy, there are ways to get counseling if you can't afford to pay for it. There are church based counselors that are free. There are other centers that are free or on a sliding fee scale. Some of them are faith based like Lutheran Social Services or Methodist something or other. But, you don't have to be a church member or a member of any religion to get counseling. I have had counseling for $5 and $10 per session.

    Are you getting any treatment for depression?

    Phoo-ey on the gal that from the knee surgery board that made that rude comment. She is probably a very young gal in her teens or early twenties who has never had more than a cold. People that young do heal faster. People like us whose bodies are dealing with even more, need even more time than the average. geez, I haven't had surgery and I wouldn't be able to carry groceries upstairs.

    Anne
  4. snailgirl

    snailgirl New Member

    I certainly can relate to the grief etc. My husband left me 12 years ago, because he wanted a healthy partner. That was when I was only diagnosed with chronic depression. Since then I've been horribly sick with CFIDS, Firbrmyalgia/Myofacial Pain Syndrome, had a hip replaced due to ostearthritis, and in November after months of agonizing abdominal pain, was diagnosed with Celiac Disease, and I'm 52 years old. I had a partner that was wonderful to me until a few months ago, but he got angry that I was always too tired to just jumpp in the truck and tacke a 3 hour ride on a moments notice, so he's gone now too. Girl friends left several years ago, and I guess you can't blame them, that every time they call you to go out and do something you are either in too much pain or too tired. Then this summer I totaled my car by falling asleep at the wheel at 3:00 in the afternoon and a 45 min. drive, so I don't dare go anywhere, for fear of falling asleep again. If I have the "poor me's" then I guess I do, but I don't call this a life, I call it existing. I will pray for you and hope that your life improves. Barb
  5. mariac2000

    mariac2000 New Member

    After 6= months you think youd get used to it. I still have days where I think I can pretend it's not there. All I know is there has to be a cure or some type of real relief out there somewhere, and I ain't stopping till I find it!
  6. totteacher

    totteacher New Member

    I can so relate totally to what you are saying!! Must have been Providence for me to log on here today. I was just having this exact conversation with my husband last night. I was telling him how I feel I have lost my old self: now I have pain all the time, I don't do much with any of my gal friends, I haven't done my art in ages, I move so slowly it takes most of my time just to keep basics done, I can't remember, I can't concentrate, etc. Gripe-gripe basically.

    But you all have so much more to deal with than me!! I "only" have fibro. Yet my thoughts and feelings are identical.

    Cathy, I think I go back and forth between stage 2-4 also. Sometimes I feel more positive and I think, ok, I can deal with this I just have to live, eat, think and do differently. Other times it is like today and I grieve.

    About 6 yrs. ago my sister went through some mental problems and would no longer care for her kids. I was the only one in the family willing to take them in. My husband and I were almost at the "empty nest" stage and looking forward to some freedom. My niece was in 6th grade and my nephew a freshman in high school. It has been really hard as they came with their own set of problems and my kids began to resent their presence. My fibro started up at that time too.

    Well, anyway, I am so glad to have this opportunity to say "me,too" I think I needed to just connect with someone, even if it is in cyberland, who can understand the feelings that boil up inside.

    On the plus side, my husband is willing to listen to me and hasn't left me. I think my friends are fairly sympathetic, and I do believe that God is with me and feels my pain. I will pray that God will be with you too and give you the strength to endure. I think you have done great in spite of all that has happened. May God bless you.

    Linda
  7. Tattoopixie

    Tattoopixie New Member

    I keep thinking I am done w/grieving & then there comes a flare & an invitation to do something that I have to turn down & it hits me again. I guess I always knew something was wrong w/me, but I got told so many times that I was a hypochondriac & that it was all in my head that I stopped talking about my pain/illness w/alot of people.
    I am very lucky to have a wonderful family who try very hard to be supportive, but sometimes they waver on the reality of my DD. Even my best friend said the other night that 'it's all in your head' (no, actually it's all over my body-lol). I also have a sister I am very close to & she is so good to me- sends me cards & care packages & e-mails me alot.
    I am still at that floundering stage, where I don't know how to define myself now & am trying to figure out who I am now. I lost my job last year due to this illness & have applied for SSDI. I don't feel bad about it. I had worked FT since my 20's. I can't do my old hobbies very much as they cause me pain.
    It has been said on this board before, but I am going to say it again, sometimes it's okay to 'just survive'. I do what I can & try not to be too hard on myself. I tried counseling & if you read my other posts you'll see that it was not a good thing (counselor was in denial-lol). I have decided to just journal & come here for support & it's working well for me. I try to get out of the house at least once a day, even if it's just to go wander around Target, Michael's stores, or the library. I read alot of books. I spend alot of time online. I got a new computer game (Mahjongg) that I love to play. I spend time w/my kids just talking about stuff. I try to rent comedy videos or watch funny shows on TV (That 70's Show).
    Don't be so hard on yourself. Do what you know you can do & don't push it or you will wind up hurting yourself. No one else can know how you feel but you. The girl who runs after surgery does not live in your body. She is obviously someone without a clue about your DD. Don't worry about what others think. You are doing the right thing. Enough said! LOL. Sorry this got so long.
    ***Pixie***
  8. Bellesmom

    Bellesmom New Member

    Isn't it great to have all of "us" to listen when one of our group is needing that? I know how alone I felt before I found this message board. I didn't go to internet sites much because I didn't want to be part of a pity party.

    So glad to have found this group of folks because there's always a topic I just "happen" to relate to.

    I guess I kind of put myself on hold after I realized this illness was gonna stay longer than a few months. I don't think too many people in my former life miss me anyway since I had quit my fulltime job just a couple of weeks before I actually came down sick and my focus was on my husband, family and the "new life" I was going to have. Little did I know what my "new life" would become so shortly.

    I go for a few months and then something will overwhelm me and I cry for about 2 days and then seem to be "good" for another few months. Anyway, there is a lot more to it that can't be said in a few paragraphs but I think we all have a former life we dearly yearn for and sometimes a subject here on the message board will bring everything flooding in on us.

    Thank you all for just being here - I have gained a lot of insight from your descriptions of your lives, pain, meds, etc. I, too, "only" have FMS/CFIDS but it has put me in bed almost full time and played havoc with anything I try to do. So, doesn't matter what the diagnosis, we're all in this together.

    I am sure glad just to be able to communicate with people who truly understand what I'm going thru because I never understood chronic illness before. No one can and no one should have to put themselves in our place. It's too difficult. It's wonderful when they try to understand and want to help.

    I would never tell my aged parents how bad off I really am because they lost their only other child, my sister, to scleroderma in April of 2000 and will never get over losing their baby. They are 85 and have not really had major illness, hate doctors and still toodle around in their car for lunch (scary). But I always wonder what went wrong with my sister and me.

    Since I am 62 I don't have the responsibility of raising children but I do have grandchildren that really need me and it's hard to not be able to do all the things I used to do with/for them. I try to stay positive and pray that God will use me to do something for Him even in this "season" of my journey.

    Love you - thanks for reading all of this.

    Pam
  9. teach6

    teach6 New Member

    A year ago I took an internet self-help course specifically designed for people with CFS and FM. It helped me learn to pace myself as well as deal with the anger, and learn to accept my illness and live within the boundaries it has given me. I just received an email about the next set of courses which will begin soon.

    I am now in the process of becoming a leader for these courses. This session I have been in training and I will go solo later this year. I highly recommend it.

    Self-help course registration ends soon

    The next session of the CFIDS/Fibromyalgia Self-Help course begins April 7. Registration ends March 31 or whenever classes fill, whichever comes first. (Recent classes have filled up before the end of registration.) The class is an 8-week email discussion group that focuses on practical strategies for managing common problems of fibromyalgia, CFIDS and related illnesses. In this solution-oriented course, you exchange ideas with fellow patients to learn how to pace, set realistic short-term goals, reduce stress, manage emotions, improve relationships, and minimize relapses.

    To learn more about the course or to register online, visit our website. The website is cfidsselfhelp (Edited to remove URL)


    Barbara
  10. bejo

    bejo New Member

    I have accepted that I will have fibro the rest of my life and it has changed my whole life.I can accept the pain pretty good because I was diagnosed with OA when I was 25 and have a lot of pain with that.But it's the tiredness I have a problem with.I miss being able to do things because I'm just too tired.I get exhausted so easily and quickly,and either have to lay down for a while or fall down.When I was first diagnosed with fibro and had my first flare of being really tired, I said that this illness gives a whole new meaning to the word tired.It also gives new meanings to a lot of other things too.I know that a lot of people have a lot more pain with it than I do.Try not to get hurt by people like the woman on the knee surgery board.There are so called "normal" people who don't even try to understand how we feel.((()))
  11. kerrymygirl

    kerrymygirl New Member

    I miss everything!! Try to keep a positive outlook but as I get older and have spent so much time and money only to be back to square 1,I am getting tired. I live alone and miss the touch of others, not like I can go into grocery store and start hugging everyone, my shopping privileges would be taken away,even though it is so hard to shop,might be a favor. Do need food it is about all I have left,even thought diet sucks. I miss the active,try anything athlete that I was. I miss being out in the working world,even though I volunteer, when I can. I miss my family and friends, never hardly see my kids. Everyone is spread all over. I miss normals(??), anyway after long illness people get tired of waiting on you. When I have met someone I like after I cannot keep up I see the coolong off. My x copped out while I was close to death bed in hospital. What a trooper. There was never a place I went I did not make friends or get hit on. Used to be the last to leave a party,love dancing. Now if I can make it I am the 1st to go.Gosh, I could go on and on. I know try to enjoy a less painful day,appreciate my best friend even though she had to move. The others I was closest to recently died so it has not been easy. I guess we just take aa few steps forward and then some back. Get up again and keep plugging I laugh at all the dumb things I do when I used to be so perfect,lol.I am fortunate to live on water and enjoy the wild life and sunsets,sunrises,since I am up so much. I try to pat myself on the back when I can do plumbing,electrical,and other projects. Miss who I was sure as heck do and my brain still thinks I am sometimes. I do those push-crash things knowing better. My brain does not always pay attention to my screaming body when I am on a mission. I worked with many many fm pts. at clinic I wanted to cry everytime I heard their story. Such nice people and they felt stripped of life. We should be sporting medals instead on being denegrated by so many in society. I can`t tell you how many people have asked me how I do it including dying cancer pts.There are so many stories out there in this sometimes cold world,sounds like a movie. I had been surfing the web,I am computer illiterate this is all new to me, anywho I saw the title of that film I Remember Me and the tears just started to flow,not a big cryer, everything started to flash before my eyes,of the vibrant, fun loving person I knew. Guess I had pushed some of that down until I saw the title. Do your best to find the positive we all slip(remember we are human even though docs have sometimes treated us less than,and others we relyed on. Keep the spirit that you have alive. Big HUGSSSS
  12. Mikie

    Mikie Moderator

    We are not allowed to post URL's here, even if we try to type out the extension parts. I've left the name of the website, which is OK to post. I found it easily by doing a web search.

    Love, Mikie
  13. griswoldgirl

    griswoldgirl New Member

    it is nice to know I am not alone. sometimes that is all it takes to pick me up a bit. Barbara I will check out the class you are speaking of, thanks

    cathy