Can't do the lifestyle

Discussion in 'Fibromyalgia Main Forum' started by sat556, Sep 10, 2005.

  1. sat556

    sat556 New Member

    Hi all.

    I am having real trouble changing my lifestyle to fit in with my FMS and I am wondering if I am alone. Having read many posts on here most seem to be 'fitting in' with their problems.
    I work full time, normally about 12 hours a day, although I do four days a week. On the day off, I work part time for myself but this usually means admin and sitting at one computer or the other so it isn't too strenuous.
    When I finish work I am shattered, I often find myself falling asleep driving home and can't be bothered to eat or do any house work when I get in but I just refuse to fall into bed as I feel I have been cheated out of my evening! Of course the upshot of this is that I seem to be caught in a vicious circle, feeling ill yet carrying on which makes me feel worse. I then attempt to sort the entire mess out at the weekend. By mess I mean my lack of sleep, the messy house, the bad eating etc.
    I suppose I just need to get a grip. I have been depressed for years, and battle with it every day to one degree or another, so that feel that I don't care how bad I feel, how much of a mess I am living in, etc.
    I have a friend who is extremely supportive, but she just says the same as everybody else, which is that I should go to bed early, eat better, do a bit of exercise, and mostly... chill out!
    I know I need to help myself, but I feel so cheated, as I'm sure we all do, that I just refuse to stop even though I know I should. The main issue is sleep. I am permanently tired and fall asleep frequently, especially driving or at work.

    Look at that! That's one ALMIGHTY whinge! Sorry ;)

    [This Message was Edited on 09/11/2005]
  2. rileyearl

    rileyearl New Member

    I can relate to what you're talking about so well. I was only diagnosed with FMS in June of this year, but after reading about it, I'm pretty sure I've had it since I was a teenager (I'm 52 now.) I have always been a hard worker, pushing myself to the outside edge of my limit. The last job I had was a real pressure cooker. I was working long hours and some weekends at home. I was so tired I had to roll down the windows and crank the music all the way up to make it home. The worst thing was that I usually had my baby in the car with me. Talk about crazy. Finally in June of 2004, I just quit. I couldn't do it anymore. I didn't think I was sick or anything--I just thought corporate America was trying to kill me! But, when I think back, it's been 20+ years since I've had enough energy to do more than work in one day.

    I started an internet retail business at home, which is working out pretty well because I can nap when I need to and spend my insomniac hours working. Whether the business is profitable or not is another story. The thing is, I could have kept pushing myself and I probably would have ended up in this current extremely painful flare up a lot sooner than now. Being tired all the time is awful, but when you don't listen to your body, it will rachet the FMS up another notch until you do listen. These days, between my fogged-in brain and the pain, I'm sure I couldn't work at a regular job.

    I'm sorry you're having such a hard time. It's a terrible thing to find out you're going to deal with this DD for a long time. I don't know how well I've accepted it either. I still feel like a real slacker most of the time. There are quite a few on this message board who are working--maybe they'll be able to share how they do it.

    Wishing you good sleep!

  3. Smiffy

    Smiffy Member

    One of the main symptoms of our illness is extreme fatigue, that is not relieved by sleep. You already know deep down that you need to rest more, & that if you keep working these hours your health will eventually completely crash (mine did 18 years ago, & has left me severely disabled, & housebound ever since).

    Don't listen to people who know nothing about FMS/CFS. Exercise, unless it's simple stretching, may make you worse. You need to rest much much more!!!!!!!! You already know that junk food won't help you recover. Can you cut down the hours you work? Can you afford some cleaning & laundry help in the house? Can you claim any form of disability allowance? Can you increase the salad, vegetable, fruit & protein part of your diet?

    What is your doctor doing to help you? Have you told her/him that you are so severely fatigued that you fall asleep whilst driving, putting your life & other road users at risk? Have you told her/him that you cannot function properly at work? If s/he isn't helpful, do consider changing to someone more enlightened.

    There, you've whinged & I've nagged. If you don't take enough rest now, eventually your body & brain will do it for you. lol x
  4. BxGirl

    BxGirl New Member

    I could have written your post. I also REFUSE to let this stop me!!!!

    I am working full-time now - 7:00 a.m. to 4:00 p.m. I go to Curves 3 days a week and am a busy volunteer with two organizations. My 84-year-old mother lives here and I help her too.

    I have a sleep disorder - I don't know what it is yet - the doctor has to call me with my sleep study results. I fall asleep at my desk at work and at home, in the movies, watching TV.

    I go to bed too late as I also don't want to give up things. This weekend was particularly bad. One of the organizations I belong to had a conference and I spent all Friday night and all day Saturday participating. By the time I got home last night I was totally wrung out. I felt as if my body were oozing out of me. My hips hurt too, my feet hurt, my neck and shoulders hurt.

    I also feel "driven" to do things. Yesterday I was afraid I was going to eventually CRASH! It's awful! I don't want to stop working and doing things.

    I am seeing a new doctor now. He is a psychiatrist and a pain doctor. He wants to treat my fibromyalgia. I'm hoping that he'll be able to help me.

    [This Message was Edited on 09/11/2005]
  5. hairdresser51

    hairdresser51 New Member

    There is nothing to hard and nothing to small that God cant work out, if you put your trust in him and let him have you can adjust to your new life style. As they say lot go and let God.
  6. Rose_Red

    Rose_Red New Member

    I'll apologize upfront for being so blunt. I just don't have it in me to be anything else today.

    If you don't find a wa to change your lifestyle this illness will quite literally kick your butt and frce you to.

    You're much better off trying to change things now to help keep it in check instead of continually overdoing it. Take time for you. Incorporate rest into your schedule. you're entitled to breaks and lunch at work - try finding a quiet place to lay down - even if it's in your car. Is there any chance of changing your hours?

    the way you're going you will burnout and then you'll know how dreadful this disease can become. And nobody wants to see that happen to you.

    Falling asleep while driving is just plain dangerous. you have to be responsible in your actions. The consequences of this activity in particular are deadly.

  7. smiffy79

    smiffy79 New Member

    i am so sorry to say but rose red and nature baby are right.

    if you cant plan and pace for yourself then fm will force you into it and it will be a damnsite worse.

    i fought against it harbouring after what i once was and what i once did. i was very active i was on arugby team i competed in karate and cross country running and then the sports i didnt compete in i went horse riding every sunday and bare foot running (to toughen my feet up for karate) swimming biking footie i never sat down! :)

    i used to think about those things and look at my trophys and certificates and cry,once i got all upety and said (aloud!) f '' this and i got up and tried to do my karate excercise routine (i did it every night and then right before training at the dojo) stretches were fine sit ups all so,i still do them now but only 30-40 at a time.
    anyway i got to the SQAUT THRUSTS! ouch! i ended up in a crying snotty mess on the floor who could not only not get up but was rendered unable to move at all!

    i had to wait until i was no longer crying/yukky and call for help!

    that was the turn around for me. i only do my voluntry work in dog rescue and go to dog training,dog walking. potter with my house work take care of my ids and get them to school by learning to pace.

    i used to look at myself as a shadow of my former self but you just cant do that it so demeaning as we can still be so much.

    hey i hope you read this lot!got type happy sorry.

    if you really must drive home and its really un avoidable do try to grab half an hours kip before you drive home and you will find you wil not be robbed of your evening.

    take care of your self and think pacing pacing pacing,hey and stuff the house work! :)
  8. elsa

    elsa New Member

    You've gotten some good advice. I understand the frustration and guilt. I refused to give in too. However, I do say "I'm taking time right now to research, treat and heal so I can get into remission and continue on with life".

    I haven't given up any of the things I love. I just cut way back on the hours devoted to them, i.e. work, horses. I also plan for "healing" days afterwards. I
    might pay for a service that I used to take care of myself.

    In my heart, I don't believe this is a permanant situation. I'm getting stronger and stronger. The illness will not go away, but remission is possible. If I hadn't cut back and allowed some type of healing to occur I believe I would have lost the ability to do any of them.

    Whether we like it or not, our bodies are going to stop us in our tracks if we don't make the time to rest and heal. I made it my decision and on my time frame ... my choice ... not my body's ultimate choice. I gave myself some control over this illness.

  9. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    is dangerous. It's what I did, only I didn't know. The end result was the same. Rose Red said it well.

    Also, if you know you are prone to falling asleep driving, that is as bad as drinking and driving. I will not drive when I know I'm prone to severe episodes that impare me as much as drugs or alchohol would. You are an accident looking for a place to happen. I don't mean to sound harsh, but I feel strongly about this.

    I wonder if you aren't punishing yourselves. I've seen alot of mention of guilt here. You do have a right to do whatever you want to your own body, though I wish you would cherish it above all else. But to put someone else in regular jeopardy is not fair.

  10. Juloo

    Juloo Member

    I think we all do. It's very hard to give ourselves permission to let go of our 'lifestyle' even when we know it is the right thing to do. But let me put it in a metaphor so that you can see the sense in doing so...

    A friend comes to see you. She's just been informed by her supervisor at work that her hours (and thus, her paycheck) has been cut to half time. She *knows* she should give up the extra shopping trips, that really nice vacation she has planned but hasn't yet taken, maybe *not* buy that new car just yet, eat in instead of out, etc., etc.

    What would your advice to her be? Shouldn't she be hunkering down, tightening her belt and making plans for the long haul until things turn around?

    But instead of taking your advice, she goes right ahead living on a full-time salary, charging the part over-and-above her half-time pay. Sooner or later, she's going to be paying the piper.

    Another poster said it -- continuing your 'old' lifestyle when you have the diagnosis you do is a recipe for disaster. One way or the other, your body is going to get you to rest. You can go and go until you keel over, or you can take some control over the situation and make some strategic cuts so that your energy holds out.

    Up to you.
  11. afeni

    afeni New Member

    I can relate to your story and those of many others, and so many people are giving good advice...

    But my question is this..
    How much do you truly love yourself?

    We can all come up with more reasons than we could ever post to push and push until we are bed-ridden and unable to enjoy anything ever, because of the pain. Its unbelievably easy to do.

    I had to cry alittle before I could answer this post, because Of my own situation. Because i am doing the very things I should avoid. But my responsibilities to my kids, one of which suffers from this dd, hold me hostage. Because they have no one but me who can care for them.
    And my delima is simply, my kids, or me. I have to say that if it was just me, I could live better with no problem for the quest of better tomorrows. To pace myself, and take are of me, well I'd love it actually. But I've discovered that if I take care of me, I can't take care of my kids. And vice-versa. I've tried.
    But there is no such this as this life style. Its about choice. A choice to love and honor yourself or a job, or other peoples expectations. There is only one you, and if you aren't willing to love yourself, who will???

    To listen to your body, and respect its limitations, and try your best to give it what it needs is hard, because we are a bunch of driven people, but shouldn't it be the easy part? Do you want to feel your best? Live with the best quality of life you can offer yourself, for as long as you're on this earth? Or do you just want what is now?
    And then suffer terribly and be pretty much NOT able to do anything else?

    What is most important to you????
    LOL and much peace
    [This Message was Edited on 09/11/2005]
  12. Kat_in_Texas

    Kat_in_Texas New Member

    I can also relate to exactly what you're going through. I was dx'ed with FM last fall, but have probably had it for decades. I put up a pretty good front most of the time, working full-time, going about the usual details of my life ... and sometimes even have days on end where I feel relatively decent. But it never fails that this DD catches up with me and knocks me on my butt.

    I went on a lovely vacation for 6 days last week ... walked more than I have in years, was up early and stayed up late at night, did the whole "tourist" thing and was able to keep up with my hubby the whole week. But this week - BAM. I'm laid out and hurt like I haven't hurt in a year. I don't know why I was able to get through last week so well and am having to pay the price this week. It's so damn frustrating.

    Because I appeared 100% healthy and full of energy last week, my husband thinks I'm totally faking it this week. I could barely drag myself out of bed this morning, after 12 hours of sleep I still felt awful. I can barely move today, my back/arms/shoulders hurt so bad.

    Sometimes I wonder if my husband is right, that this is all in my head?

    I feel like I'm going crazy .....

    Good luck ... I hope you find a way to slow down a bit and make time to incorporate some healthy habits into your daily routine ... and if you do, let me know HOW because I need to do the same!!

    Big hugs.


    [This Message was Edited on 09/11/2005]
  13. bpmwriter

    bpmwriter New Member

    if i've learned one thing from about ilnesss - you cannot and will not get better if you charge it like a bull. i've learned a lot from studying taoist books which teach a way of life in stark contrast to the typical western way of living. the main concept here is, be like the water that flows around the rock. can you give up your part-time work on friday so you have another whole day to yourself? on a subconscious level, i believe the depression for a lot of us comes from a kind of self-loathing that we know we need to slow down and we don't! this creates a terrible disconnect between mind and body. please, take a moment when you have a clear head, look at your schedule and find some time to rest and pamper yourself.

    be well,
  14. I don't want fibro to fit anywhere in my lifestyle either, but it has taken over my body and d@$n if it won't let go. Lord I wish it would. I have fought it and fought it and it doesn't do any good, I am just now waiting for one of those rare but "good" days. I don't know anyone could work with this dd. Maybe your lucky and the entirety of it hasn't hit you yet full force.
  15. Adl123

    Adl123 New Member

    Dear Sat.
    I was just like you,until I had a spontaneous anaphalactic reaction and found myself in the emergency room. Please be careful. Falling asleep while driving could kill you and others.
    I got over my guilt when I became so tired that I was supremely grateful just for a chance to do nothing. I will admit, though, that I still feel guilty sometimes. When that happens, I remind myself that some people live doing nothing wheir whole lives and are fine about it. I remind myself that I have worked very hard since highschool and there is nothing wrong with taking care of my body now. So, I try to do what I need to do, and that is... rest.
    About feeling cheated - well, I guess we all feel that. However, things could be worse, and that is what I try to remind myself, when I feel sad about what I cannot do.
    Good luck to you, and I hope you find happness in all this. There are other things besides work. There are other ways to be happy and to contribute.
    Big hugs,
  16. abbylee

    abbylee New Member

    If you have the sleep disorder that so many fms patients have - alpha wave intrusion - then you aren't getting proper rest. With a schedule as fast paced as yours, you need to get adequate delta (slow wave, restorative) sleep.

    Please have a sleep study to make sure you're getting proper sleep or you will burn yourself out within the next few years. That's what happened to me.

    abbylee PS I finally had a sleep study, found out that I have the condition, and am being medicated for it now. I have much less pain, and I don't fall asleep during the day anymore.
  17. JLH

    JLH New Member

    First of all, WELCOME to our board/support group!! I see that you are new. As you can already see from the many responses, you have come to the right place!!

    Let me introduce myself. I am 54, married with 3 adult children and 2 grandchildren. I am retired now, after working 30 years in corporate America--and know too well about the life at fast pace, high stress, detail oriented, deadline driven, pull-your-hair-out, and work-your-heart-out jobs!

    I, too, worked anywhere from 10-12 hrs/day for 8 hrs pay, plus took work home and worked on weekends just to get the job done. My job wasn't like that the first 10 years of my career, but was the last 20 years of it.

    I had a drive of 1 hr 15 min to get to work (and to get home). I know all to well about your problem of being so fatigued that it is hard to keep your eyes open for the entire drive to and from work! I had the same exact problem. At times, I would have to stop half way into my drive at get a cafeeinated drink just to wake me up. I would drive in the winter months with no heat on, a window cracked, and the radio up loud to stay awake.

    When the kids were young, I didn't get to bed until 11 or 11:30 and had to get up at 4:30. My quality of sleep was not good. I wish I had know about sleep disorders then! If I knew then what I know now, I would have had a better quality of life while working!

    I have had fibro/cfs and lupus since I was around 10 yrs old but the doctors thought I had MS, growing pains, or plain did not know why I was sick all the time, so fatigued all the time, had migraines, etc.

    Those years of working while my children were babies and growing up are now just a blur. I really don't know how I did it and still live to talk about it!! LOL

    I have a multitude of health problems (see my bio) and finally could no longer work, without fear of having a heart attack at any moment, and retired at age 48. My company was having a reduction-in-force campaign and offering ways to retire early, as well as incentives to retire early -- so I took them up on it!

    ABOUT THE FIBRO LIFESTYLE ..... I had to change my Type A personality a lot afer I had the third child and continued to work.

    First of all, YOU DO HAVE TO LEARN TO CHILL!!!!!!!!!! LOL Your friend is absolutely correct!! I never did housework when I came home!!! Never, ever. What I did not get done on the weekend, just waited until the next weekend! I fixed the easiest, quickest supper that I could think of. My husband always worked his day job and was out on the farm working all evening, so I NEVER had any help from him.

    I didn't care what the house looked like during the week because nobody ever visited us during the week because they knew we both worked, and with all the kids, we way too busy to do anything during the week, and my hubby and kids went to bed early. So .... did not worry about anyone seeing how we lived during the week -- and if someone did stop by, I had the "who cares" attitude!

    I learned to simplify everything that I could. I ran what errands I had to run on the way home and after I got home, I NEVER, EVER, WENT OUT OF THE HOUSE.

    On weekends, the children all had chores to help me get stuff done at home so we could take off to get our grocery shopping done, etc.

    You say you are depressed. Then you have to do something about it. Talk with your doctor. Find the right anti-depressant for you, and TAKE IT!! I, personnally, like Cymbalta--I just started on it 6-8 months ago.

    If you do don't think you sleep is quality sleep, then do something about it! Have a sleep study performed. I did and I sleep with a CPAP machine with oxygen. I have obstructive sleep apnea. I wish I had done this when I worked. I also found the right muscle relaxer to take before bedtime (Zanaflex) which helps me relax and sleep like a baby.

    EVERY PROBLEM THAT YOU HAVE -- DO SOMETHING ABOUT IT! If you don't take action to fix your problems, you will never get any better.

    While working, I stopped after work in a town half which was at about the half-way point on my drive home, and took an arthritis warm-water aerobic class. Exercising in the water is the ONLY WAY for ME!! The water takes the stress off your joints. This helped me even more since I am overweight and made it easier for me to exercise. And .. a bonus benefit was that the water was soooooo relaxing that it helped me sleep better at night!!

    I do feel cheated out of a life that I so loved. But I feel cheated from my health in general, not just the fibro/cfs. Because of my health problems, I had to quit a job that I loved, even though it was high stress, I loved it! I thrived on the stress. I had an important job that really helped my self esteem. I was involved with everything, even though when I came home, I was about as washed up as a dishrag!!! But I ate it up! Now .... I have nothing. No job, no socializing with friends, no talking with the outside public, no interaction with anything! I am almost a hermit in my home because I am no longer physically able to do anything!

    I still continually dream about being at work, running here and there, going on business trips, being in the corporate office conference room, etc. Then I wake up and realize that I am retired and can't do it anymore. I can't cut it. I LOVED to work. I WANT to work. I can't understand about people who are lazy and ENJOY collecting welfare and unemployment checks. But now, I am collecting a disability check. I HATE IT!!

    So many of us here are in the same boat. We older ones who are retired and do not have the same problems as the younger ones who are still working and raising children do, but we have been there in your spot, and we survived, somehow. You just have to figure out a plan of action and try it. Try different meds until you find out what are the right ones for you.

    The right meds, quality sleep, exercise, friends to offer support, the "I don't care" attitude about your house, all help in "the" lifestyle!

    Think about yourself first!! Take care of yourself,

    You say you are working 4 - 12 hr days, then working at home on your own. Can you financially afford to quit or cut down on your at-home job?

  18. bioman85

    bioman85 New Member

    Hey smiff, I was looking at your old posts and wondering how you are doing on the guai protocol?? Any progress?

  19. sat556

    sat556 New Member

    I have been working at the weekend so I have only just got to check if I got any replies. Thanks to you all for all your advice.
    With regard to the people that told me off for driving... I am of course aware how dangerous it is. If I am on my way home I can stop in a lay by and have a nap. The issue is when I am on my way to work. If I get in late as a result of this, they will use this against me when it comes to the annual pay review. This I have complained about and the personnel department say that they are aware that I have a 'condition' and that it will be taken into account, yet the main manager of my department will not do the same. If they did refuse a rise to me alone of course I would take them to court.
    To answer other points: I can't afford to quit work, the fact that I do all my hours in 4 days instead of 5 has helped a bit, but they feel like very long days!
    How much do I love myself? I don't. I am bottom of my priority list.
    Can I get help with cleaning etc? Well actually I do. My mother lives just over the road from me and she comes over quite a bit and helps me out while I am at work. The trouble with this is, that even though she is a tremendous help to me, she is also always going on about how much of a state my place is! Lol. Bless her she just doesn't get it.
    With regards to my depression, I was on various tablets for years. I am now off them, self removal. I was assessed by some guy from the local mental health team who completely missed the point of what I was saying, made some very offensive comments then left saying I should go to anxiety management. I did this just to show willing and was told by the person running it that I need not have been there. I have since been back to my doctor who has written to them again, only to recieve no response, and he has since told me that I should call them myself. I will not do this in case I get that offensive man again, and I do wonder if I am being ignored because he is being obstructive. He came to see me with a set of opinions that he refused to budge on even after having listend to me (allegedly listened anyway).
    I have just had a set of blood tests with regard to my narcoloptic tendencies and I get the results this Friday coming. I don't know if I need to nake an appointment until I call to get the results but I am not entirely sure what he is looking for anyway.

    Thanks to all that responded, I wasn't sure if anybody would.

  20. MKlady

    MKlady New Member

    I finally had to cry "uncle". I feel guilty I can't do more. I've always prided myself on being productive, keeping it all together - job, family, bad marriages, house, hobbies, church responsibilities, and on and on.

    I had to give up a very visible promotion because I can't do what's required. It sucks!! Bigtime!! I bring in the bulk of the family income and I'm scared I won't be able to do it - and what that will mean to our lifestyle.

    BUT, I finally had to admit I can't do it all anymore. And I decided to go for broke. I have "checked out" of my life for the next 3-6 months to see if the Fibro and Fatigue Centers can help me. I'm told I may be able to get back to almost normal with time and treatment. That's a ray of hope I didn't have before.

    I wish now I had listened more to my body when I was falling asleep on the road, in so much pain I couldn't function, and overwhelmingly worn out at the end of every day. If I had listened then, and taken action then, it might not be as bad now.

    Take care of yourself - you're the only you that you've got!

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