How Many of You Are Grieving/Mourning "Old" Life

Discussion in 'Fibromyalgia Main Forum' started by steach, Jul 17, 2009.

  1. steach

    steach Member

    Hi Friends-

    I'm wondering if it is just me -or- are any of you grieving/mourning your "old" life/lifestyle?

    I know that Fibro is not supposed to be progressive, but, as the years have passed since I've been diagnosed (8), I am becoming more and more limited in my activities. Age may play a part but I am only 44 and shouldn't be feeling as I do.

    I thought that I had reached the "acceptance" part of this illness but now I am having a very difficult time coping. My children are older now and I do not have to care for them as when they were younger; I thought this would bring me physical relief in my life. Most days, I feel like I am in my "unhealthy" 60's.

    This should be the time in my life where I tend to MY wants, hobbies, friendships, and my relationship; however, I feel horrible and don't have the desire to pursue extracurricular activities.

    I miss the "old me" when I did things with my children, worked full-time, had relationships with my friends, had cook-outs and get-togethers, fixed dinner every night, cleaned the house, kept-up with laundry, ......... I physically can not do the things that I used to do and enjoyed. I soooo much miss my life before Fibro and it is getting really depressing.

    Do any of you have the same issues and emotions/feelings? How do you cope? I just want to be "normal" again.

    Any suggestions/advice?

    I hope you all are having a great day/evening.

  2. Debra49659

    Debra49659 New Member

    I feel like there is nothing left of the "old" me. I don't like this me, I don't like the pain, I can't accept the pain. Not much of my old lifestyle is left.

    I started therapy, I also attend a pain counseling support group...and a FM support group. Of course I have this site for online help as well.

    I know the pain is not going away, I know it is unlikely that I will ever have a pain free day. But I can't accept that. That is the hard part.


  3. rockgor

    rockgor Well-Known Member

    Yup, I've been missing my old life for almost 30 years.

    So I take my meds and my supplements and go to my 12 step program and
    read self help books. They all help, but nothing has cured me. The chit chat
    board is pretty much my social life. I am so glad we have it!

    When I get really depressed or angry, I just fall back on Scarlett's method.
    I try not to think about it. (Not terribly effective.)

    Hope you can find something to help.

  4. greatgran

    greatgran Member

    I can relate to every word you said and how I miss the Ole Me and My Life . Everything for me has changed and not for the good. I do have the same issues, emotions but on ways of coping I don't think I can give any advice that has helped me.

    Normal, I don't think I ever will be "Nomal" again and I feel like my hopes and dreams are gone as I can't travel and mostly housebound. I have CFS/FM, Anxiety/depression plus the aging issue.

    Acceptance would be the key and believe me I have tried and one day I think I have accpeted this life only to find myself in tears the next. To this day I havn't found a doctor that I fully believe in and nor have I found any treatment that works.

    I am sorry to be of no help and negative but this is how it is with me. I do hope you receive some good positive advice.

    God Bless,
  5. steach

    steach Member

  6. TeaBisqit

    TeaBisqit Member

    I don't think you ever get over losing your life. I've lost everything in my life from this disease. The list is huge, from my body shape to losing homes and family members, my ability to work, to date, to join things. I can't do anything. I can't make plans, I can't commit to anything or sign up for anything because I never know how I'll be. I find it painful to watch healthy people doing simple things that I can't do anymore.

    I've coped by throwing myself into my file coding. I don't get paid for it, but I can focus on it whenever I have alittle bit of energy while laying in bed. But when I'm not doing that, it's hard. I want my life back. I want to do fun things again. I would love to go swimming or to Trader Vic's for dinner or a million other things I can think of. I want to be well enough to date again.

    I don't even really remember what it's like to wake up and not be in severe pain. I remember being healthy as a child. I remember having more energy than my friends and wanting to do things till it was late at night and past my bedtime. I remember my father taking me to Disney when I was a kid and we would get up very early and stay till midnight, walking all over and going on all the rides and I wasn't in pain and I had that energy to have that fun. What happened to that health?

    None of this is fair. What I have now is not a life. I exist with no one and nothing left to me. And not much matters to me anymore. This disease steals everything from you until you have nothing left.
  7. jasminetee

    jasminetee Member

    Hi Steach,

    I go through mourning all the time over all of my losses and inability to function well. I think this is one of the biggest challenges of having this illness. I was on the brink of wanting to be done with all this and move on. That's when I realized I needed to make some changes in my life. I had to adopt the stance that "What others think of me doesn't matter" and also that "What they think of me is none of my business." I've had to pull way back from just about everyone in my life.

    I think DeterminedOne expresses this so well, "The only way I know how to cope is by simplifying my life as much as possible, by not getting involved in any affairs and activities, discussions etc that will stress me out. Unfortunately this also means distancing myself from friends and family."

    I was watching a show about Heidi Fleiss if you remember her in the news. She was out of jail and saying that while she was there she had to stop contact with everyone she knew in the outside world in order to get through it. She lost a lot of relationships because of that but she seems at peace with it. She made that decision because it helped her survive her incarceration emotionally and mentally. I think about her saying that a lot and can completely relate to it.

    Doing this has really helped me a great deal. I really have to cut off from anyone who doubts the severity of my disability as well. Boy, is there ever a lot of anger there especially because I'm continuing to suffer more and more all the time physically. I consulted a priest about my anger and he said, "Well aren't they lucky they have their health." about the people in my life who make me feel bad and guilty and act like I'm a liar.

    I'm working on forgiving them all which is helping me but it is a lifelong process. Some days I'm more at peace with all this than others.

    I think it's normal to mourn our losses and we are continually losing more and more as time goes on. Many times I'm astounded at the depth of loss in my life. The loss of dreams and the loss of having the ability to go after any dreams.

    Hang in there Steach. We can all support each other through this.

    [This Message was Edited on 07/18/2009]
  8. quanked

    quanked Member

    I have come a long way in that I do not spend long periods of time thinking of what I use to be. But I have fleeting moments where I think of how fast I could accomplish some task that is now taking days or never gets completed. I try to use humor but somedays, when I am really tired, I could just cry.

    As with most trauma, individuals will process it over and over throughout their lives. The processing is not exactly the same each time. It will be the processing of new and different stuff unique to each individual at that point of their development as a person. It will be different for each of us but of course there will be similarities.

    I expect that I will be processing my grief of what I lost because of the dd's until I die. Just as I periodically process my grief over losing one of my sisters nearly 30 years ago.
  9. MsE

    MsE New Member

    CFIDS hit when I was in my early 60's. Now I'm 74. Bit by bit I'm getting worse and it grieves me. Some days I feel death is breathing down my neck.

    I want to be an active grandmother. I do not want to have to pay such a heavy price as weeks and weeks in bed if I do a bit of traveling. I want to wake up feeling positive about life. I want to be able to say "yes" when I'm invited to do something without adding, "if I can." I want my brain to work efficiently.

    My friends who are in their 60's and 70's are doing all kinds of interesting things, physical things and mental things, and they have a difficult time understanding why I spend so much time at home and reading or watching stupid old TV.

    On the other hand, I look at my sis, who has MS, and I feel such admiration. She is in much worse shape than I am, but she remains positive about her life and finds much pleasure in what she CAN do. She laughs when I tell her this, and says that she has found a good friend in denial. She knows she is extremely sick, but refuses to dwell on it. Each exacerbation leaves her less able to function. She has to have someone come in to take care of household basics. If she bends over to pick up something she has dropped, she has to be careful or she'll fall. She falls often.

    So although I desperately miss my old life and wish (oh how I wish) I was as physically and mentally active as my friends, each time I watch my sister cope and hear her laugh and listen to her discuss her very positive philosophy, I am inspired to keep my complaints for this board and a very few friends and pull up my big girl panties and get on with it.
  10. lil_biscuit

    lil_biscuit New Member

    Dear Steach,

    I can completely empathize with your sense of mourning your old life, and the old you. I have had ME for over 7 years, FM for just over 5. It took me a very long time to stop asking myself the question "Am I really sick, or do I just think I am". I spent so many years with people in doubt of my illness that, though I knew I felt very ill, maybe I was just crazy instead. Within the last two years I have slowly stopped asking - because I KNOW the answer!

    I think that the American lifestyle that we lived before becoming ill is not only part of the cause, but exacerbates the suffering we feel having theses diseases. We have spent our whole lives learning to keep up, and now, against out will, we have to relearn how to live in a completely different way, with totally different goals in a way that is just not acceptable to the outside world. I sometimes dream of running, playing tennis, rock climbing, doing yoga, things I did before I became ill. But it seems less and less possible that will be a part of my life. I agree with you that some cases are progressive. I don't think anyone knows this disease well enough to say it isn't. I feel most patients can educate their doctors, because we are the only ones who know what it is truly like. Unfortunately, we are all different!

    I just turned 40. When I was diagnosed, My fiancee left me because he didn't want to be stuck with a sick person. We also had a business and a house together, so I had to start from scratch having the monkey of this illness on my back. I have gotten progressively worse over the years, even though I try to walk every day (thank heaven for my dog!), but sometimes friends have to do that for me. My house is always a disaster, the laundry is always piling up. I think I have an advantage over you in that I do not have a family to raise or answer to, but I also feel very lonely and isolated sometimes. I have lost a lot of friends. Some, ignorant of the diseases, think I am faking it or it is all in my head. I have dumped those friends, because the last thing we need in our situations is a "friend" questioning our veracity, integrity, or mental wellness. I have a great therapist who has helped me learn to get rid of the energy sumps in my life.

    I would give anything to have a different diagnosis from ME and FM. It is a horrible, horrible illness. We lose so much. But I try to remember that things are supposed to happen for a reason. For me, I know it took me out of a relationship that would have become a bad marriage. I have learned to appreciate the small things in life more. A great book that continually helps me is "Wherever You Go, There You Are", by Jon Kabat-Zinn. He has another, "Full Catastrophe Living", which is also very appropriate, but difficult to read. The first one is easy on the eyes and brain, is enjoyable to read, and can be opened to any page during difficult times for support.

    Anyway, I hope this has been of some help. You are not alone. I am grateful to be able to come to this site because sometimes someone writes something that helps me out of my dark hole, and sometimes, I have the opportunity to help someone else. Some days I feel as if I have crossed into a parallel universe, a different version of my life, with the test of such pain and illness, and if I pass the test (in spite of not knowing what the test is or even the point), that maybe I'll get to cross back to the other side, where my old life awaits, only better for having learned what I did from the test. That, and my dog, are what get me through.

    Let me know how you are. Take Care.

  11. Empower

    Empower New Member


    I miss not being able to entertain or plan anything
  12. italiano

    italiano New Member

    I signed on today for the first time in about a month. I felt the need to check in. I saw the posts here and knew it was divine intervention because today I really felt the grief of old life.
    I am 46 and also feel like a 65 year old. ME,Fibro,anxiety/depression. I went on a trip to visit my family and got back yesterday. It was so hard faking being well around them. They are supportive but no one can understand what we suffer. I have been in bed all day today. That's what happens every time I try to do something "normal". I was swallowing my 4th pill of the day and felt so upset at having to do this every day just to function. Even with a supportive husband...this is a lonely life. I also do not have the strength or energy to do hobbies,crafts or even read for long. I hide from socializing. It's too draining. If I do too much and am overstimulated I start to shake. I don't have advice. I am just grateful for this website.
    take care...
  13. isiselixir

    isiselixir New Member

    I may have not had CFS relatively long (about 3 years) but my case is fairly severe to the point that I have almost no life anymore. I am only 31 and I feel like how I should feel as if I were old and ailing. Consequently my new lifestyle consists of crossword puzzles, online tv shows, and the like... always done from my bed. I just don't get it. I don't get how I could be such a healthy, energetic person for 28 years (dancer, martial artist, etc.) and then gradually over a few months in 2006, I develop a condition where I can no longer function well... and with no explanation. I'm sure many of you feel the same. It just feels so unjust sometimes.
  14. AnneTheresa

    AnneTheresa Member

    FMS seems progressive to me. That is to say, over the years, I've experienced a physical decline that has effected my functioning. I've lived with this devastating illness for thirty years (diagnosed at age 21). Nine years ago, the condition became severe; I had to stop working and give up most physical activities.

    I have, for the most part, reached the acceptance phase of loss, though I still feel sad and/or angry from time to time. I do miss the old me and all I used to do but, as time goes on, I've adjusted to this new sedentary life and I'm once again able to experience the joy of life on a daily basis.

    What was most difficult for me was to find meaningful activities that I could do from my diminished state. Reading and watching television can be enjoyable and pass the time but they never gave me that sense of being productive or contributing to the community.

    I discovered that participating in this - the ProHealth community - gave me a sense of belonging and being able to answer a post, provide information etc. gave me a sense of contributing to the community. This, in turn makes me feel better about myself and less isolated.

    Using my time to learn new things, develop spiritually, write poetry & prose helps me realize that my life is not over, it's only different.

    I've invested much time, thought and (mostly other people's) energy into making my home an illness-friendly environment. My rooms are comfortable, easy to navigate, no obstacles or barriers, everything is easy for me to reach etc. Likewise, I've altered the way I do things to prevent pain, save steps, conserve energy, etc. Finding ways to improve the quality of my life has become a pet-project.

    I hope something I've said has helped in some way.

    Take care and thanks for raising this topic. As you can see, you're not alone with your feelings.

    God bless,
    Anne Theresa

  15. steach

    steach Member

    to all of you who have shared your thoughts and most intimate emotions- I really appreciate it. I have found that I am not alone with this disease. It makes me so angry to hear of all the things that we have been robbed of and have had taken away.

    I need to find activities in my life that "fit" my lifestyle; I guess it is like trying on shoes to find the right pair that fit and are comfortable. I am not a reader and I am sooooo bored with watching TV that I could scream.

    I saw my rheumy last month and asked him, "When is this ever going to end?" He said, "It's not. This is a chronic condition. It is treatable and managable but not curable." I knew the answer but just wanted to hear something that gave me hope.

    Someway, somehow, I need to find activities in my life which give me something to look forward to, give my life meaning once again........ I'm going to have to "shop around" until I find things -and- positive people who understand (if that is possible).

    I sincerely appreciate all of your responses. I guess that I have some "shopping" to do. Thank you for all of your information, ideas, and suggestions.


  16. jasminetee

    jasminetee Member

    It sounds like you have a really good Rheumy there. I value doctors that tell the truth.

    I spend a lot of my time studying now. I study math, sciences, languages etc... I find it keeps me feeling productive and intellectually stimulated and I can challenge myself as much or as little as I can handle in any given moment. There are so many sites that have made learning fun. Time just flies when I study too.

    My goals are to get through the programs. I had all sorts of hobbies before but had to keep changing them as I've gotten worse. Now I'm usually flat on my back and all I can handle is my laptop.

    It's been a frustrating experience but my days are still fulfilling to me.


  17. Leaknits

    Leaknits New Member

    Me! Me! See my hand waving here in the air?

    This d'd has knocked me on my fanny, just the same as others here.

    It didn't help any that a broken and ill-repaired leg happened 7 years ago nor that I was lied all those years by MediCare, drs & nurses who operate MediCare-accepting offices, high-up exec types at hospitals, etc. The lie? That I couldn't get a hip fix until I was 65 or 70.

    It turns out I'm not the only one, not that I thought I was. Here in Lake County CA it seems to be the mandated dr- (or whatever Authority) to- patient-dialogue says "No, you can't have anything done for your leg until you are 65 or 70."

    I thought about that for years and think I have come up with a reason why they all lied: because by the time the patient gets to be 65 or 70, THEN the Authority can say "Oh no, you are a bad surgical risk; you can't have your hip-fix."

    Wonderful. But you were asking about ME/CFS/FMS and I derailed the subject. I'm sorry. It's just that I'm so angry about lies that removed what little bit of life that was left behind by the thieving d'd.

    You said that you had thought you had reached the "acceptance" stage of what has hit us.
    I think acceptance comes and goes, depending on the rollercoaster of stress, exhaustion, pain levels. Also I'm not sure that "acceptance" and "coping" are the same thing. Semantics are difficult to deal with.

    Perhaps it's a matter of interpretation. Someone sees me out in The World, for instance shopping for a few groceries because I HAVE TO, since I'm out of whatever.
    The person may presume my coping skills are improving. They may be right .
    I'd love to believe that. Mostly, though, I think the reason I'm out there is because I have to be, or else go without whatever it is I need.
    I'd love to be wrong.

    Steach I apologize that I jumped in here with nothing much to say, no advice, no coping strategies...the non-funny joke here is that "My coper's broken."

    I tend to call "normal" a curse word. This d'd that takes away the Old Us, makes it so we hardly go anywhere unless we absolutely have to such as the rare shopping for food trip or a dr appt.

    Friends have vanished because we can't keep up or, in some cases, even keep our word such as "Sure I'll go out with you Tuesday."
    Then Tuesday morning arrives and we absolutely know there will not be going ANYwhere on Tuesday nor until the rotten thing we deal with will let us.
    So we contact friend: "Sorry, I can't go out with you after all."

    Put yourself in "friends'" shoes. How often would you give an invitation if the person being invited first said "Yes" and seemed happy to have been asked, then called to say "Uhhh, I can't go anywhere today. I'm sorry."

    I do believe that the disease(s) is/are progressive. I don't believe, as I have been assured by several drs, that both ME and FMS arrive simultaneously in a body. Why? Because I know people who have one but not the other.
    I don't know what cereal box-top medical school some drs went to, but most I have tried to get help from didn't know as much about the d'd as I do.
    Scary. And most of the scary drs resent it if we do any research.... they won't do it and, apparently, we aren't supposed to.

    This thing has stolen my life. I read a post quite a while back that the name of the disease ought to be "Dead but don't have sense to lay down." Which I don't intend to be isn't....but it explains pretty clearly just how a lot of us feel.

    Again I'm sorry I couldn't offer any suggestions or other help.


  18. steach

    steach Member

    about alot of the things that you said.

    My rheumy will NOT accept ANY medical insurance at all. he has told me on more than one occasion that doctors who belong to HMO's will be penalized monetarilary(?) if they prescribe too many medications, order too many labs, too many diagnostics,........ IF, they follow a particular guideline of not ordering too many of this and that, they receive a money bonus, trips, etc.

    He has said that he will not allow people who are not doctors, yet alone rheumys, to dictate how he handles each patient's treatment. He actually does alot of research and writes articles for the American Assn. of Rheumatology. He is open to suggestions and treatments which I find from this board!

    You wrote about friends- they offer invitations and we can't attend or have to cancell at the last moment. I can understand how frustrating that must be for them; maybe they think we have something else better to do or just simply don't want to get-together. In our MINDS we want to but our bodies won't allow us. I think this is how the vicious cycle of isolation begins. How do we end it? How do we help them understand that we don't attend special events/celebrations because we just CAN NOT function.

    My best friend's son was diagnosed with leukemia and a benefit was held for him. I had the date marked on my calendar for over two months so that I wouldn't forget. The day of the event rolls around -and- I'm in bed with a severe migraine. I know that she was very hurt that I didn't/couldn't attend.

    I used to be reliable; people used to count on me for things; I would participate in organizing community events..............sometimes I can't even attend special events for my own children. How many times can you "let your children down" before they don't believe a word that you say?

    My youngest son is 8, just finished 2nd grade and will be 9 in August. Thank goodness that his dad, grandparents, my older children, and fiancee have been there for him. Instead of getting his hopes up that I'll be at an event, and then don't attend, I have to tell him that I am working. If I can get there, I tell him that I got finished early. Uuugghh, alot of the time, I feel like his grandmother instead of his mother. This just kills me emotionally.

    Lea, I agree that "normal" is a curse word.

    Please don't apologize for saying what is on your mind or how you feel. I think with each post, we all can relate and learn something from each other. I appreciate your honesty and the fact that you shared with all of us.

    I wish you the best.

  19. soulight

    soulight New Member

    It is another beautiful day out today. Cool , slightly windy , clear blue sky . Very unusual for late July in Michigan. Where would I be in my old life ? Walking all over . Just journeying wherever my feet and whims would take me. I LOVE TO WALK!

    Where am I ? On this board writing about it instead of doing it. I miss the outdoors and just going walking when the wandering spirit touches me. I think I miss this most of all.

    I have been trying to "replace" parts of my old life with new things . Sometimes it works and sometimes it falls like a ten ton load of lead. I get down . I get depressed. I get tired of looking for the good and positive side of things. I am human . I think going to therapy is a good idea . My insurance does ntt cover any kind of therapy , physical mental or spiritual . There is a support group a couple of hours away . Maybe...

    Something that I can still enjoy is music. Has anyone used Pandora ? It is a music genome project where you pick what songs that you like and then they compose a music station just with songs that are your style. Cool I am listening to it right now. It is a good mood lifter ( if you choose upbeat songs !)

    Still working on myself and my life as it is and mourning my old self and life , but trying,

  20. Leaknits

    Leaknits New Member

    Oh Steach you make me cry...wait, I don't mean YOU but your words, which hit me right in the heart.

    I never had children. The joke goes like this: "All my kids have four feet and fur" which gets me some very odd looks until people figure out gee duh that I'm talking about pets.

    Thank goodness my pet cats (2) don't expect much more than food and water and being brushed at regular intervals and a clean sandbox!!

    If I'd had two-footed kids and wanted to Be There For Them but had to keep letting them down..."Sorry, I can't take you to ballet class, I'm too tired" or "I know I said I would TRY to be in shape for a few of your friends to come here on your birthday but I just can't", I don't know how mothers of two-footed kids DO it and deal with the d'd at the same time.

    Rewind My Life Tape: The phone rings. "Would you like to go to lunch today?"
    "Oh thank you for asking but I just don't feel well, but I appreciate it that you invited me."
    "Well how about on Tuesday instead? That's three days from now; do you think you'll feel better by then?"
    "I don't know. It's hard to make plans that far in advance."

    Now I look at that "tape" and think the person listening must have thought I was nuts to say that three days was a long time in advance.

    After a while the phone stops ringing. If a person drops by without calling, like as not there will be notes on my door: "I am sleeping. Do NOT wake me. Leave a note. I'll try to call you later."

    So the people stop visiting, too.

    The phone bell most of the time now is turned to "Off," partly so I might sleep if I can and mostly so I won't know when no one is calling. The silence just might shatter what self-control I have left and there I'd be, a sobbing heap because I'm so lonely.

    Dammit, this is NOT a life. It's barely an existence. I'm 61 and do not want to live like this for however much time I have left, be it 20 minutes or 20 years. Yow, 20 more years of this?? No way.
    I keep saying it: "My coper is broken."

    I've tried letting MDs send me to shrinks. Not good; I leave feeling even worse than when I opened the door.
    Besides this thing is not a mental illness, I don't care what the MDs say. Sure, it can make our minds feel unhinged but that is not the same thing. The MDs junkmeds can unhinge us, too, but if we dare tell MD that, he acts as if we are reacting oddly on purpose....and he resents it.

    And what business is it of that person on the other side of the desk, he or she with all the personality of a turnip (I hear they are trained to act that way!), anyway how are the answers to the questions which have nothing to do with this d'd any business of the person with all the alphabet soup letters behind his/ her name??
    I don't understand that part at all.

    Oops I slid off into my Shrink Rant; wasn't intentional.

    Anyway, a clink of a glass or tea cup or coffee mug to each and every one of you dear people, Cheers!
    I hope we can find some. Cheer, that is.