How Many no Longer Work due to this DD and Feel Lost ?

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Nov 13, 2005.

  1. greatgran

    greatgran Member

    Just wondering how many of you are no longer able to work because of this DD or some other health problem and feel empty on the inside?

    I haven't been able to work for five years and have plently to do around the house if I am having a good day but I find housework and cooking etc..very boring..

    Most of my use to be friends still work and even though I have a husband, children, gran
    and greats but I feel so lost and empty..I am tried of pretending to be happy when I feel so unhappy..I can't find a passion in my life anymore..Like I am so empty on the inside..

    Even my family gets on my nerves I just prefer to be my myself..They use to be my everything, but I can't do the things with them I use to its just to much.. What is happening to me?

    The things I would like to do I can't seem to because of this DD and I know I have to find something besides the house, laundary and cooking..I think one reason I don't enjoy the house chores is because I can't do them like I use to. I even dread my husband coming home in the evening because he wants a meal I can't seem to cook anymore.

    Believe me I am thankful for what I can do and know I have a lot to be thankful for but still I have such a void or something in my life..I dread everything and look forward to nothing because most of the time when I plan or get excited about something it falls thru because of my condition..Maybe its depression I just am so tried of feeling this way..Can anyone relate?

  2. aquabugs

    aquabugs New Member


    I can pretty much relate. I had put myself through school to earn two biology degrees while raising 2 boys alone and working nights as a waitress. I went to work six years ago doing work I loved - environmental monitoring of streams, lakes and rivers.

    I was diagnosed with Sjogren's Syndrome (a supposedly milder cousin of lupus) about 4 years ago. I was also having odd muscle pain and stiffness and suspected fibro, (which was confirmed just this year when it really started to rear its ugly head).

    I kept working but it got increasingly difficult over the last couple of years. Severe fatigue started about 2.5 yrs ago and I tried my best to beat it. I'd work in the field and then drag to work for days trying to get everything else done.

    I managed to go like that for a year. I asked for and got an alternate schedule at work (4-10 hr days rather than 5-8 hr days). I was commuting 45 miles to work and then doing a couple hundred miles worth of driving a day at work. At the beginning of this year I had to give up the environmental work and instead was assigned to inspect public drinking water facilities. Important work and for the same pay, but much less strenuous and VERY boring to me. I did that until this past summer when the fatigue REALLY hit. Since June, I was only able to work about 2/3 of my work hours. I could not beat the fatigue. The last inspection I did in June involved 2.5 outdoors looking at the facility and about 2 hours sitting in an office looking at records. I got back to my office at 1:45 and by 2:15, I was so weak I had to leave and go home to bed. That little bit of work kept me home in total exhaustion for 10 days. The doc I had at that time said I also had CFIDS.

    I went like that through the summer and finally in late August, begged the doctor to give me some time off. He told me, "Keep doing what you are doing. If you stop working, you will never go back. Just keep going just like you are." I left his office in tears, wondering how I was supposed to keep up like I was. I'd been doing it for several years and was just getting worse.

    I fired that doc and found a great one in Houston. He put me off on temporary disability in early September. I was supposed to go back to work on Nov 1, but, of course, that didn't happen. I am now off at least until Feb 1. Unfortunately, I was terminated from my job on Nov 4 due to not being able to perform the duties of my position. My boss fought long and hard for me. she's been so great to me and cried when she found out that I was being let go. That decision came from headquarters in Austin. The good news is that when/if I recover, I am eligible for rehire. At least I can look forward to maybe going back there if these DDs release me enough to let me function normally. (hey, I can dream at least!)

    So, here I am, newly unemployed and disabled. Never thinking I would be one to be in this position. Do any of us ever think that? I went to school for a lot of years and worked hard to get my Master's degree and now here I sit at home. It breaks my heart.

    I know what you mean about family. I remarried and have a wonderful understanding husband who does everything he can to help me and makes me rest. One of my sons who was staying with us got to see how this affects me and does help and is very understanding. My youngest son lived apart and would make sarcastic comments like, "Yeah, I know, you're too tired. You're always tired." That really hurt. However; he has been staying with us for about three weeks now and he has seen first hand how I feel on a day to day basis. He's had a real change of attitude finally. It does help to have a supportive family. Hubby is retired and is home all the time.

    One thing I miss is what my husband calls "self-time." I have none of that. I used to get a little on my long commute. I could turn up the radio and listen to what I want. Now if I get in the car to even go to the store, hubby is RIGHT THERE. I never get a moment to have a thought without someone there. If I go upstairs to rest, he follows me. I love him dearly, but some days it drives me insane!! I miss getting to interact with people at work. I didn't have a lot of close friends there, but had some good "buddies."

    I feel for you though. I do at least have a "passion." One good thing being unemployed has given me is time to pursue my art. Hubby taught me how to work with stained glass when we got together six years ago. I got a kiln last year and have since branched off into fused glass. If I take it easy and don't overdo, I can get in a couple hours a day in my studio. Yesterday I had my two yr old granddaughter overnight. We had lots of fun and after her mom picked her up around noon yesterday, I crashed on the couch for the rest of the afternoon. I woke about 530 feeling really crummy. Gradually I woke up and around 8:00 I was feeling great. I went out to the studio at 9:00 (hubby) was asleep) and spent 3 hours working at my bench totally was GREAT!!

    Greatgran, we can't control these diseases, but I suppose we can adapt and try to find the good things about it. For me, its things like spending more quality time with family, actually having the leisure to sit on my patio and listen to the water fall into my fish pool and watch the birds I feed in the yard. I am getting to spend more time making art and will hopefully get to maybe make a bit of money from glass jewelry. Who knows, perhaps I'll find a new niche?

    Good luck to you and gentle ((hugs)).

    [This Message was Edited on 11/14/2005]
  3. greatgran

    greatgran Member

    Thanks for replying..It does help to have someone that understands or whatever..
    I too belive even though I can't do like I once did I still have a purpose in life but whatever mine is I would like to know.. I have prayed about this and know there is an answer but wish I would soon know what it is..

    Maybe this feeling is part of depression.
    As I do have anxiety/depression and agoraphobia..Mainly I think its because I never feel good, there are days that are better than others but get so tired of pushing and doing when I feel so fatigued..

    Keep in touch and I will say a prayer for you..
  4. kgangel

    kgangel New Member

    You guys all did so much. I feel so bad about not working too. I was a teacher aid or Special Ed and Alternative kids, High school and middle school age. It was such a joy to bring them hope and hug the ones that never get hugs at home and to just be there for them.

    I really miss it and I do feel empty wtih out it, but I only did that for 4 years. Before that , I worked as a health care provider. That is where I injured my spine and had to have surgery. I was ok enough to work about 4 years after that, but now myspine is a mess and I also have FM so I am in way too much pain to go back.

    I can barely get the house work done now and I am afraid to go out by myself, always asking my husband to go with me, I feel guilty enough he is working for both of us and I ask him for that too, so I am trying to do more on my own and get some of mylife and enjoyment back.

    You sound amazing though greatgran, I wonder if I will ever get to the point that I have grand kids, long well great grand kids, I can't even keep up with you now, long well then, lol

    I would have to say it sounds like you are doing well, please tell me how you get through it like that , with all the pain you are in and everything.


    PS: I should be doing more then I am , but I am trying to get back to it.
  5. caroleye

    caroleye New Member

    Gran............Think we've talked about this one before (I'm the 62 yr one). I've struggled since the 80's to "recreate" a lifestyle that would fill the vacuum.

    I did a pretty good job until a few years ago when I was thrown from a horse (lst time ever!!), and forced us to sell our ranch & let my horses go. Since then that "emptiness" has increased to be almost unbearable.

    My prior "transitions" just seemed to "come" to me; showing me my next enjoyable step as I follow my yellow brick road. But this time, it seems to be taking forever.

    Fortunately I've been in therapy forever, so she helps guide me through these times. Recently I once again talked of the "empty" feeling, and we came to realize that my "workerbee" was learning the other side of the coin. How to "allow" whatever is presented to me on a daily basis. But before I can do that I have to "fully release" the "old" & the grieving of what used to be. Not easy!!

    But it's been a week now of my asking for the old to move on and the 'new' to come in. And I never know what that's going to be. But each day, "something" has entered my life for me to involve myself in. Sometimes it's something that lasts for an hour or days. I have to be careful not to "judge" what it is, but just to be grateful it's appeared.

    Whewwwwwwww whatta lesson. And "no" family/hubby/friends don't "fill me up".

    I just have to remember to read my "intention list" daily.
    And put my "guardian angels" to work for me!

  6. greatgran

    greatgran Member

    I don't think any of us ever expected to have to give up our jobs and just when I was getting ready to retire..I too tried to work, would take a leave then try again
    with shorter hours but no longer ..

    I am so glad you have a passion..Sure know what you mean about alone time..My family does not get it and my husband does nothing around the house and that is one thing that makes me so angry..They expect me to do everything for them as I have always done.. I just want them to get it !! but as long as I can drag out of bed they think I can do and I am ok...

    An example I have told them I can not have guest and Thanksgiving this year ..well now its about 23 family members coming and some for overnight..mostly my husbands family..I told him he would have to help I could not do this..His reply is what can I do whats to do..Oh I am so angry I think I will run away Thanksgiving , get me a motel room with room service...

    Guess this is pity party time for me today..
  7. greatgran

    greatgran Member

    Thank you, I am so glad to hear you say that the family just doesn't feel the void. I was feeling so guilty because they don't..Oh, I love them but I need to find out whats going on inside of me..

    Gotta let go of the past I know and try to find a new passion or something for me then maybe I can be better for my family..

    I am sure the age issue is not in our favor..

  8. greatgran

    greatgran Member

    Know what you mean about the guilt..I think we have to accept the fact there are things we can do and things we can't..Look who's talking..haha..

    I get so darn mad there are time I need help but won't ask for it..Guess we need them to volunteer without us having to ask..

    Heck, all I feel like doing is nothing..

    Prayers for you,

  9. greatgran

    greatgran Member

    All I can say is AMEN to every thing you said..I am sorry you suffer but misery loves company..It seems so good to have someone to understand..

    God BLess,
  10. rockgor

    rockgor Well-Known Member

    AND DEPRESSED ALMOST all the time.

    Study; work hard; plan for the future; save your money; etc.

    So I did all that. But I had to give up my law practice and friends drifted away and relatives don't understand. Now I'm once of those pathetic cases you read about. People who can't afford their medication (which is $9 to $10,000 a year.)

    I feel like my only purpose in life anymore is to provide income to the medical/drug establishment.


    So I'm a crabby camper most of the time. And I would not even attempt to fix Thanksgiving dinner for 2 dozen guests!!! HOW DARE THEY?!
  11. greatgran

    greatgran Member

    Thank you, thank you, what you said is exactly how I feel..Yes, I am angry..I am so angry that I have no money, no friends and the family, I hate to be angry at my family but today I can't stand my husband because he just doesn't get it...

    Loved your post,
  12. Jeanie101156

    Jeanie101156 New Member

    I have felt bad about not working and lost for 4 years now. Jeanie
  13. chopindog

    chopindog New Member

    I hate this illness, I hate what it has done to me. I feel like it has robed me of everything, but mostly of myself! I worked so hard to put myself through college, and really thought I had been blessed by god, because I found a career I truly loved and was truly good at.(Nursing) Then BAM, at 27 years old it was all taken away.
    My future seems dim and pointless. It is so hard to wake up everyday to the empty hole I have become! I try to keep a chipper attitude, but in reality most the time it is just an act. And the longer I am sick the less I feel like acting. I HATE THIS DD!!!!!!!! Joy

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