Do You Ever Feel Like You Don't Exist Anymore....?

Discussion in 'Fibromyalgia Main Forum' started by catgal, Jun 16, 2003.

  1. catgal

    catgal New Member

    Hi All~~Perhaps I am just going through a rough couple of days, but with all these illnesses (FM/CFS, degenerative disc disease with multiple back prolems, rheumatoid arthritis and disc/nerve damage in neck/shoulder area, rheumatoid arthritis in both hands, asthma/allergies, osteoarthritis, and psoriatic arthritis) I am so exhausted, in pain, and drained by the end of my 3-day workweek that I spend the whole weekend in bed resting, recovering, and watching the world from my window.

    Friends stopped coming by long ago; family and best friend lives far away, and I live in a beautiful, but small & isolated Village in the Rocky Mountains.

    Except for weekend calls from my Mother and best friend, I don't hear the sound of another human voice until I return to work on Tuesday through Thursday--then repeat the same bedridden recovery process every weekend.

    I look out the big bay window from my bed, see the beautiful, sunny days of Summer coming on, and remember how years ago I would be out hiking, rowing, mountain climbing, floating the river, or doing something active and vital on these days off work. Now it takes an entire day just to mop the floors in my home because of the pain.

    I look around at all the chores that need to be done, but don't have the energy or strength in my back to do them. No extra money to hire help. The clutter & mess drive me crazy as I used to take pride in my home and keep a good house.

    I am 54 and my sole financial support. I used to never miss work, had all my paperwork completed on time, and did alot of extra things for the staff & Program. Now because of the rheumatoid arthritis in my hands, I am always way behind in my paperwork and because of the additional ailments can no longer do the extra things plus I miss alot of work and worry about losing my job.

    As tourist season has arrived, everyone's yard is cleaned and neatly mowed. I tried to mow my yard yesterday and within 30 minutes my hands turned beet red & hot from the RA inflammation, swelled up like puff pastries, I couldn't hold onto the lawn mower anymore, my back was killing me, and I ended up having an asthma attack. Had to take a hot bath, take meds, and back to bed.

    Sometimes I just feel though me and my life no longer existed. At times I'll try and just get out, go for a drive through this Beautiful Country, but my hands swell up & hurt from holding onto the steering wheel.

    I know I'm just in a Blue Funk right now, and I'll get over it. Sorry for writing such a bummer post, but just needed to get it out of me. Thanks for listening.

    But, I any of you ever feel this way?

    Blessings to All, Carol....
  2. LeLeHpr

    LeLeHpr New Member

    Going through a "rough" patch right now as well..Maybe it is the funky weather coming through??? Always seems to effect us so imensly (SPELLING, boy that is funny)....Please ahng in there and know we all care about you!

  3. babyblues68

    babyblues68 New Member


    Yes I can relate!!! I just posted something similar. I'm sorry your down right now. I know the clouds eventually lift, but that does no good sometimes when your in the storm. I pray it gets better.

    (gentle hugs),
  4. Mikie

    Mikie Moderator

    I'm ging through a bit of a mid-life crisis myself here. I've been lucky enough to have done everything I wanted to, so there are no big plans for the future. I used to be enthused because there was always some goal I was working toward. I haven't been able to work in 2 1/2 years but hope I can return at least part time this summer. I am not excited to return to what I was doing even though it pays well; it is very demanding work. I'm not at all excited about taking a low-level, low-paying job either. I'm not sure who would hire someone who has been sick for so long.

    I feel fortunate enough to have good family, but they don't live near me. Most of my friends have moved away or moved on with lives which no longer interest me. I used to work hard and party hard. Been there, done that, and don't want to do that anymore.

    I guess eventually that things will fall into place as I return to work, but I just don't have the interest anymore to get out there and persue a social life. I'm not depressed, just not interested, which I guess, could be a form of depression; I don't know. I hate to sound trite, but "Is this all there is?"

    I feel as though I should be doing more with my life. I'm usually a hopeful and optimistic person which has helped me to heal a great deal physically, mentally, and spiritually, but I guess I'm wondering what I'm going to do with it.

    Love, Mikie
  5. catgal

    catgal New Member

    I appreciate you all taking the time to read and respond to my post. I don't feel quite so invisible anymore. Just one of those Blue Funk Days.

    It's supportive to read your responses although I don't wish these bad times on anyone.

    It's just this feeling of being "invisible" sometimes that really gets to me. And, I think that is a form of grieving for the old me that has vanished. And I guess this feeling of being invisible or not existing anymore is my inner voice telling me it's time to quit mourning for what was and make a New Plan.

    At age 54, I want to make the Best out of what time I have left. I know I don't want to spend it feeling invisible, yet the pain and exhaustion ARE major obstacles, and like Mikie said so well--I've lost interest in doing alot of things because I've been there and done that--or because I just can't do them anymore.

    If anyone else has any responses, please write--I could use the company today. Blessings, Carol...
  6. pinkquartz

    pinkquartz New Member

    i wanted to say hello. i wondered how you were.

    i have felt very much as you write.....and indeed really its still the that i am still trying to fix whatever it will take for my real self to have the energy to re-emerge.

    Friends are mostly either dead or moved away or lost thru me being to ill to EVER join in socially. i do still have a few friends and these i value very much.

    My personality is very different and my looks too.
    Lately though i feel i have begun to find little bits of myself again....only fleeting perhaps, yet enough to make me feel that i do still exist and there is still the possibility i will feel more myself again.
    I know i would be so changed by what i have been thru , but that could be see what new person i would be.
    this is my dream and i hope it happens for me and i hope you will feel much better in your self soon too.
    best wishes
  7. klutzo

    klutzo New Member

    I was taught as a child that those who don't produce at least as much as they consume should be put to death. You can imagine how guilty I feel about not being able to work.
    Like Mikie, I have little interest in things that friends are doing. Most of those things seem so unimportant now that I am just not interested. I have become unbearably serious, I guess. I know I feel as if I am light years older than the few friends I have left, and I'm not just talking about physically. Like you, my best friend lives very far away. Unlike you, my best friend is a "starving artist" and is too poor to call me, and I can't afford to call her more than once every 2 or 3 months. Thank God for e-mail!
    Without a job, people become invisible in our society, since we no longer seem to value any activity that doesn't produce a paycheck. I guess the paycheck has become the standard for success since it can buy more of the many things we seem to think we can't live without. This emphasis on "doing" and "having" rather than "being" is just a part of our steady march into materialism ....don't even get me started on this subject!
    If I did not have a strong faith and a good husband, I don't know what I'd do. I feel for all those who, like you, have to go it alone with this illness. You need and deserve all the support we can give you. I hope there is an RA support site you can go to as well.
    God bless you,

  8. Smokeymar

    Smokeymar New Member

    YES, I can understand why you feel that way. Our "healthy" friends have given up on us. I mean after they ask us to do something so many times and we always say, "I don't feel like it." They find someone that does feel like it. My yard hasn't been mowed in 3 weeks. It looks like an abandoned house now. Pretty soon the neighborhood kids will ride by on their bikes and talk in whispers about "The Crazy Lady That Nobody Ever Sees" living here. I do what I can, and that is practically nothing compared to what I used to do.
    So, YES I do understand.
  9. elaine_p

    elaine_p New Member

    Since I've gotten sick, I can only clean about every 2 months (sometimes every 3). Thankfully I don't have a yard to take care of!

    Anyway, the counselor I've been seeing the past two years wanted me to see about getting assistance with housework. Unfortunately my disability is too much for me to qualify for assistance programs and I can't afford to pay someone yet (still paying off the debt from when I wasn't getting disability). But she kept looking 'til she found someone who was willing to do it for free.

    Yes, I feel guilty about it, but if someone's crazy enough to want to help in that situation, who am I to tell them different! ;-) (And actually, if I ever get well, I plan to offer my services for someone in our position.)

    The point is, maybe you could see if the county or state, or a private organization offer that kind of assistance?
  10. northlass

    northlass New Member

    hi catgal. aw hun you let it all out. boy yes we do know exactly how you feel. im so sorry about the such bad time you are having, im lucky i have a hubby, but he worked in the oil buisiness for 20 years. still does , but presently between jobs lol, 2 weeks on and 2 weeks off on an oil rig, boy where those 2 weeks away sometimes so hard, espesially when our 2 boys where thats when i was at my worst with this cfs,still not well enough to work tho duh. i did have my mam to help with feeding them when they got home from school, but as she was getting on in years a bit i felt soooo guilty,bless i do miss her so much as she has passed now, that was a lot of years ago now, oooooo sorry listen to me writing a book lol,i really dont know how to advise you, seeing as your , your breadwinner love, but would it be at all possible for a leave to try and recoup a little ? i do hope you improve soon, god bless you.and remember we are here for you. i know thats not like real people lol. but we try, and im very trying lol xxxxxx sam
  11. ChiaPet

    ChiaPet New Member

    I understand how you feel.I dont feel like Im truly living and Im just going through the motions.I feel like a ghost haunting these plains.But Im still hoping things will get better and Im sure they will-and they will for you too.
  12. mstg

    mstg New Member

    I know exactly how u feel...I also am alone and worry constantly how Im gonna make it pay the rent buy med...Just survive....I would love to have a relationship but dont have the energy...Im only 45 and I dont want to live out my days alone...But I want to be well like all of us here...To be well, have a loving relationship and just know what it feels like to feel love again...

    Im so sorry that u are suffering...U are in my thoughts and prayers...Trish
  13. Applyn59

    Applyn59 New Member

    Oh yes. Your message really hit home with me.
    I am 41 and have been disabled from back problems
    severely since I was 27. I then got FMS and have
    a long list of other problems. I spend half or more
    of my life in bed. This past year I haven't left
    the house in 8 months. I am physically drained
    and exhausted. I feel like like I have died. I am
    not myself like I used to be. I also find that I
    consider myself like a Senior Citizen. I see that
    in the paper and look thinking it's me.

    It is very sad. I feel like my life has been robbed.
    I live with my mother who has always had to do
    everything for me. She was recently diagnosed
    with cancer and now we both have no energy.
    I feel so guilty that I can't do more for her.
    She has always been so healthy and peppy
    and now she is very tired and I feel so sorry for
    her. We are best friends which is a good thing
    but I have great anxiety over our situation.
    We do have friends and relatives who can help
    us with errands, etc. My brother lives in another
    state but will come home whenever needed.

    I hope you feel better. I know that the rare occasions
    when I have felt better, I get very depressed thinking
    about all my lost years and lost dreams. I'd try
    to push everything back in my head or else I
    fear a nervous breakdown.

    Take Care,
  14. Myth

    Myth New Member

    FMS is called the invisible disabilty because no one can see our suffering. I think it is called this because it slowly makes us invisible. No one really cares to know what we are going through, doctors often ignore us, and we just get more tired until we become more and more isolated from those few people we can get support from.
    People say 'don't let your illness define who you are'. But it does. Pain, fatigue, and a multitude of other symsptoms limit who we can become and effect how we function in the world. Chronic pain alters the perseption of time passage (pain locks us in the 'now'), it effects how we move and interact with others, what we can or are willing to do. The neurological problems change who we are; our personality, mood, intelligence, ability to consentrate and function. People see me as an absent minded person, that startled easy, has a poor memory, can't find the words for things, and is sickly- this was not me but now I suppose it is. I used to be calm and reserved, now I am jittery and anxious. Sometimes I talk a lot and can't stop myself, and I was never one to say much before. If this is not who I am then who I am is invisible to others as much as my suffering is; and in fact who I am is becoming invisible to me as well. It seems to me that all pain tolerance is is the ability to hide suffering; we still are in imense pain but we have learned to mask it well so that society cannot tell (this is not to our benifit, but then neither is expressing it). If people can ignore your suffering they will; it makes them more comfortable. Our suffering is invisible and then we recede and become less part of the world- our very existence defined by our bodies and the pain we 'live' with.
  15. catgal

    catgal New Member

    In reading these responses, it is amazing and devastating how these illnesses mutually affect our lives--and yet we have the courage and fortitude to keep going, to keep showing up for each day. And our ability to give when feeling so bankrupt is extraordinary. I "thank you" All.

    Lynn, hearing about your Mother having cancer touched me deeply--for my Mother (though far away) has always been the one person in my life who has always been there for me--and as she is elderly now--I know there will come a day when she won't be. And I can't bare the thought of it. A while back, she sent me The Right to Die papers to sign because if she became terminally ill she did not want to be kept alive by machines--and neither her husband nor my older brother would sign them because they did not want to be the one to make the decision to shut the machines off. Since I truly understood her wishes as it would be my wish also, I signed the papers in a flood of tears and a barely recognizable signature. My heart & prayers go out to you, and it made my Blue Funk Day seem petty in comparison. If you ever need anyone to talk to--I'm here for you.

    Myth~~your words were so eloquent and definitive that it should be published so others might have a better understanding of what it is to live with this disease. I ran a copy of it off and laminated it for my own keepsake. It is as though you reached into all our hearts and expressed our deepest feelings--perhaps even the feelings we surpress daily and hide from ourselves.

    As I read and re-read all of your responses, I realized that the greatest tragedy of this illness and all the other complications is not the pain we suffer every day or the limitations imposed on us by our disabilities, but the loss of ourselves, our idenity, and the person we once were. There seems to be a pill for everything but this.

    How to rebuild a shattered life that changes everyday? Anyone got any ideas on this subject to start a new post with?

    God Bless and Comfort each and every one of us. Carol...

  16. catgal

    catgal New Member

    Suggestions for the post I last wrote about mending shattered lives....
  17. Hidn

    Hidn New Member

    I do too, I also dont know the person I see in the mirror anymore! I live in a city and I am still very isolated from evryone else it seems. My friends were mostly people I met while I was working. Now that I am not, well you know how that goes. My family is pretty far away, even my grandbabies :(
    I am supporting myself and my son, so I am not alone? He is 21 and has some awful stomach problems and anxiety ,panic attacks. He also has a girlfriend :) so I dont exist too often in his life either.
    I have started to paint, (I am not an artist at all) but I always wanted to do it, but of course I can only do that sometimes.Our lives are so different now arent they?

    Maybe we grieving for who we were? I wish I had some answers for you, or a magic word that would fix everything. All I can do is let you share a bit in my life and know you are not alone at all!
    It does sound beautiful where you are, I have cars outside my windows lol But funnily enough somedays I do enjoy even watching them!
    Please remember there are many of us, alone with this disease, you are never alone :)
    Hugs to you
  18. Lynda B.

    Lynda B. New Member

    My psyciatrist says she hear that alot from people like us with an abundance of disorder/diseases. I do have another question? Do you feel like you are not there even in a room full of people. I did for about two years. I became very detached and did not know it.

    I took theuraputic doses of Zoloft and than later realized that I had been living in such a state without realizing it. If you are still working that may be keeping you in better shape than I was. My doc described it as some people saying they felt like they had a glass wall around themselves even when with others and various things like that. Just wondered. That is more serious. As much as I love my husband, I think my mother is the only one who realy "gets it". Maybe that is what keeps me going. When I first had all of these symptoms she was working and I felt so alone even when trying to explain it to others who either really did not want to know or could not understand. Since my mom retired I talk with here all the time and she actually spends time trying to think what it must be like being me. She is such a blessing. Since I feel connected somewhere, it helps me feel connected elsewhere and I don't use anti-depressants anymore for about six or seven reasons--another story.

    Hope you figure this one out. And I do think it is important and you are important.

    Lynda B.
  19. Ellie5748

    Ellie5748 New Member

    Sometimes, I feel like the walking dead. I just don't know enough to lay down. Honestly though, I don't think I'll ever "lay down", it isn't in my nature. I have a tremendous faith that wills me on. My husband helps sometimes, but even he can't be there every time I need something. I wish I was close to where you are just to give you some support. I hope you have better days coming. Very gentle hugs to you.


  20. Myth

    Myth New Member

    I am glad you liked my post. I have been thinking about how pain affects a person when it is chronic (in fact I wrote a paper on it a few years ago when i was still in school). Unfortunately I doubt I could publish anything because there is little market for it and because I have difficulties focusing enough to do research or edit and so often my work is not at a puplishable level. I was forced to put a hold on my academic career for precisely this reason. I trully morn the mind I once had. I think I would be a great FMS advocate if I had the mind I had years ago. I suppose if we all had the energy to fight for the right to have adequate treatment and for awareness we probally would be farther ahead than we are. I guess if anyone is going to make the world understand our existence (Such as it is) it will be one of us.