Discussion in 'Fibromyalgia Main Forum' started by lillypad2, Jan 29, 2007.

  1. lillypad2

    lillypad2 New Member

    I am working 40 hrs a week and that is all I can do. I am 41 and the fatigue is really getting me. I lay in the bed all weekend.

    Is there anyone who kept on working or how do you handle this. How do people cope with this DD. Especially when you have had it a while?

    Please reply

  2. NyroFan

    NyroFan New Member


    I guess we all know when to stop. When the pain gets to be too much, sometimes it is just better to say 'enough'.Only you and/or a doctor would know.

    I know everyone has a different story. Hopefully some will post here for you.

    Lisa, you take it easy and keep reading here. You will get some answers.

  3. fungirl2100

    fungirl2100 New Member

    Hi Lisa,

    I am 33 & have been working since I was 15. I too am tired of working & it is hard. I work f.t. as a back up OPS Manager at my office. I am tired most of the time. I go home on the weekend & I don't want to do squat. My doctor does believe that it's good for me stay active. I wish I could go p.t., but we need the money. With my husband's student loans from med school & me carrying the insurance I have no real choice.

    I try to be as positive as possible. I count down the days until I am off. I try to get good sleep & relax when I get home.

    I wish I could change things for you, but I feel your pain. I am sorry I know that's not much I can offer you, but it's how I get through it. I do it for my family.

  4. SweetT

    SweetT New Member

    I work 40 hours per week and I'm a mother. So I have to be there for my children. They can pretty much fend for themselves on the weekend, but outside of chores, I don't make them cook for themselves during the week. I want them to go on and concentrate on their studies. To add to it, I'm now taking a Chinese class on Saturday, and when that is over, I'm going to go to graduate school (well, online).

    The things inside the house don't bother me. It's what I have to do outside of the house.

    People with these DD don't understand that just showering and getting dressed and commuting takes most of your energy for the workday. Then they expect you to have energy to go to power lunches and attend afterwork social events?! I just want to take a nap on my lunchbreak, but there's nowhere in this building for that. And it's too dangerous to nap in my car in the parking lot, as my building is downtown with alot of violent vagrants, and it's a public parking lot, not the agency that I work for.

    Like now, I have to walk to another building (there's nowhere to park-----the parking lot serves both buildings) outside, for a training session. But I am beat. I did bring my cane, but I just want to fall out. I was absent when the training was in my building. I just want to cry.

    What's worse is that report cards come home tonight. While my youngest consistently gets excellent grades, my oldest daughter's grades change like the wind. One marking period she might make Honor Roll and then the next she might make barely-passing roll. It always stresses me out if she gets a D or too many C's, for she doesn't realize how she's messing her life up by getting less-than-good grades. She does have the ability to make all A's and B's. That stress is making me more exhausted.

    I never have enough time on Saturdays and Sundays to take care of shopping or anything else necessary to run a household, plus catch up on rest. I don't regret the class that I enrolled in. That gives me some "me" time. I just wish that I could get a better system for everything else.

    The only solution that I see is to keep an ongoing schedule of napping from 1pm to 3pm, every Saturday. If an event or obligation interferes with this, and it's not a doctor's appointment, then I simply cannot do it.

    Yes, it's the fatigue that bothers me the most. Like now, I'm so tired that I feel like vomiting. I'm on my lunchbreak, hoping that a burst of energy will come in the next few minutes (when it's time for me to do all of that walking, in the slush, deep snow and some ice).

    I think that the key is to schedule "me time" or social events, on weekends (or whatever your off days are) but for periods of not over 2 hours. Afterwards, go home and get in the bed.

    Also, for me, I think that I need to get in bed for the first hour or two that I'm home. Then I can get up and whip up a quick dinner. I always think that I can just hurry up and cook dinner, but when I'm fatigued, it never works out----------the time just flies------------a 20-minute dinner takes 2 hours because I'm trying to juggle som many tasks, with exhaustion.

    Lisa, whatever tips you get, please share them.
  5. wannaretire

    wannaretire New Member

    LILYPAD, I'm so sorry you are in this same sad place as I am 48, and, finding it necessary to remindmyself after much
    venting that I have a choice in how severe the ties to my job must be. I downgrade my life to a bed in a rented room, find a free clinic for basic medical care cause nothing is going to speed my recovery like sleep and simple food and fewer hours at work. I only made $17K this yr but have lived on as little as $5k & unemployment the rest of the year. Value your health and recovery then you can look forward to your life eventually returning to normal after you recover. Not the american dream,I know, but whoever said this DD is compatible with the american dream. I couldn't have a family thanks to my condition so this will not apply to those who do but...
    I dream another dream these days. One of not slaving away for cable, HSIP, mortgages,cars, family, THINGS I can no longer appreciate because I just want to sleep and not hurt anymore every second of everyday GOD sends. Sounds suicidal doesn't it but somehow I still desire to live. I just want to live a little less expensively, so that I can stop the world, get off and take a nap when I flare. Then really enjoy those rare times I feel up to snuff. You're still living, just in smaller time spans with naps.
  6. SweetT

    SweetT New Member

    Many on this board say that you work because you choose to work. But it would be alot different if I didn't have kids. I could trade a condo-style apartment, with the gas-powered fireplace (for power outtages in the winter where the electricity goes off which stops electric-driven gas furnaces from blowing, but not a gas-powered fireplace) and washer-dryer hookup (how many people with DD's can work full-time and go to the laundromat weekly, or fight with other tenants for the one or two washing machines per building?) for homelessness (and never being able to rest---------I'd have to leave the shelter by 6:30am and find somewhere to go between 7am and 6:30pm. But that would worsen my health. Or, with my girls, we could go live in some cheap, drug-filled building that takes county vouchers (while I'm waiting to get a county voucher), and go back to having to step over drug dealers and drug fiends. My girls are too big for that now. They are teens and not protected by mommy either carrying them or holding their hand. They would have to step over those same drug dealers and users everyday, by themselves.

    Yes, I could move into a luxury high-rise where there is a laundry room, three buildings over, with 25 washers and dryers, and a pool (maybe even a heated pool). But how would I manage my groceries on elevators shared by other people? And how could I lug all of that laundry two or three buildings or floors over?

    For now, I'm thinking that if I really learn to live my life according to the limitations of my DD's, I can continue working and continue living in a place with the conveniences like a laundry-room right in your unit. On the days when I stick to being out no longer than perhaps 3-4 hours on a Saturday, and then promptly take at least a 3-hour nap, I do fine.

    When my Saturday nap is skipped, it sets the tone for Monday through Friday. On Sundays, I'm always tense because a new workweek will begin the next day. I'm working on getting through that.
  7. deliarose

    deliarose New Member

    and I quit my job before I figured this out..but I got rid of the really bad fatigue in a couple of months with Vit D and lots of supps...

    Finally got on Transfer Factor. Brain fog started lifting..Been on it 5 months. Huge difference.

    May add an anti-viral. I know that Valtrex doesn't work for a lot of people... but it seemed to work for me when I tried it once,, and I may try again.

    Hope this helps. I understand where you're coming from. I miss work.
  8. lillypad2

    lillypad2 New Member

    I know I am still working because I have bills to pay. I also am on a lot of drugs to keep functioning. The best thing for my fatigue is adderall and percocet. I take all kinds of stuff from the Fibro and Fatigue Center. Hormones, cortisol, thryroid, viral drugs, antibotics, vitamins,anxiety drugs, sleeping drugs and so on.

    This really sucks!! But I got it and I really don't think there is a cure. I think it just gets worse. It seems to have with me.

    I really can't afford to quit so I guess I will go until the drugs quit keeping me going. Then I will do something. And to think people didn't believe in this disease. That really makes me very upset with out government and so highly educated Drs. I read about one girl dyeing from chronic fatigue. I just wonder how many really have.

    Sorry I got off on all this. My mom died at 49 and she had chronic fatigue and fibro also back problems. I really think she died from this disease since her heart stopped working. But they said she accidently Overdosed with her meds. Wow, I could see me doing that with all the drugs I take just to live.

    So for the weekends, I will sleep like always and catch up on my rest and hopefully be able to work thru the week.

    I hope your girls get better and I really appreciate your comments. Please let me know if anyone takes something to keep them awake during the day. I really feel like I have narcolepsy. I would sleep all the time.

    Good luck, take care and lots of hugs!!

  9. lillypad2

    lillypad2 New Member

    I took that and it makes me very edgy.

    Thank you


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