Those With CFS How Do You Spend Each Day

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Apr 23, 2006.

  1. greatgran

    greatgran Member

    I read where some of you are able to work, do housework, care for children etc..Well when I try to be "normal" I end up in bed, even with pacing..

    I would love to hear from you and how you spend your days, activites, chores, traveling etc..

    With my anxiety, mornings seem to be worse but I make myself get up and putter to get a few things done. At noon I try to rest an hour or so, then try to start dinner if I can..Shopping and traveling are just out for me..There are times I try to make it to the grocery and attend a few family things but on those days that is all I get done..After dinner I am ready for bed but try to stay up, because when I go to bed I can't sleep..That is another issue no sleep maybe 4 hrs a night..

    I feel my husband is getting so discourged with me as I have always kept things going with the house, yard, family but no can do anymore..

    Then comes the statement well so and so has fibro and she is working full time.
    I have CFS first and fibro second plus the anxiety/depression. At my age I just don't think its going to get any better and that I can't do any more..Then I wonder if its a mind thing, maybe I just think I can't..

    Hope to hear from you,

    [This Message was Edited on 04/23/2006]
  2. UnicornK

    UnicornK New Member

    I pace myself, but I still overdo it on a regular basis. I find that if I don't feel like it that day...I don't do it. I'm very lucky in that hubby will pitch in without my even asking. He helps with the dishes and laundry. Both these chores involve bending, so they can put me out for a while.

    I enjoy shopping, but again I have to be careful. I lean on the cart...and I take a cart even if I'm picking up one or two items. I walk slowly, and I'm careful how I pick something up, especially if it's on the bottom or top shelf.

    Cleaning house (yuk!) is the hardest, I think. I use boxes to carry things from one room to another. And I use a carry tray to carry all my cleaning supplies around. Most times I only do one room a day. Hubby has to do the vacuuming because our vacuum is too heavy for me.

    For me, most of these things I have learned through trial and error. I think that's how most of us learn, aside from good posts like this. Never be afraid to ask a question. It could save you some pain down the road!

    God Bless.
  3. suz9601

    suz9601 Member

    I am 28 also, I think it makes it even worse to be so young and sick. I have been sick since I was 18 years old and only get worse. How can a person keep from being depressed when like this? I hate lying on this couch all day while all my friends have the life I should be having. It sure is hard to deal w/living this way being so young. It does help me to know that I am not the only one my age being affected by this DD...I hope someday we can find a way out. Take care,Suz
  4. sherri_baby

    sherri_baby New Member

    I try to save my energy on the weekends because I am still trying to work throughout the week but I am laying down every day right after work and on Saturday I sleep all day throughout the night and when I wake up on Sunday I may try to do several chores but I have to lay down every twenty mins. or so. It is very frustrating because my life is passing by and I am missing so many activities with my family and friends. :(

    Best wishes, Sherri
  5. Fibrolady37

    Fibrolady37 New Member

    Im so tired when i wake up everyday 24/7 i hate the way the tiredness makes me feel.
    My carer comes in 1st thing she gives me my meds makes my brekkie & puts my lunch time meds ready in my pot.
    I go back to bed as much as i can.
    I told my doc how tired i am he said go for a sleep in the afternoon.
    If i go shopping i hire a scooter & whiz around town for a few hours.
    I go to bed when i get home.
    I cant do cleaning i have a cleaner i cant do shoping so my friend takes my daughter to shop.
    Hope this helps you take care ok?
    May god bless you & yours.
  6. Adl123

    Adl123 New Member

    Dear Greatgran,
    I have both diseases, also. I really have to pace myself. For me, mornings are the best, If I have a Dr's, appointment, or have to go food shoping, that is all I can do for that day. Actually, I give myself a rest day before and after any activity. You should see my daily planner. I have written REST in large letters all through the month! There is no way I could work.

    On the days that I'm resting, I just do the minimum. I cook little, and clean less. I watch TV and do some reading. I take a 2-3 hour nap in the afternooon, and spend about 2 hours on the conputer every day - some at this website, and some playing games or searching out interesting topics. I meditate as much as I can . That is my life.I'm older than you are, I think . I'm amost 69.

    I'ts not in your mind. If you can't do it, you just can't. I worked for over 15 years with CFIDS, until I crashed. Now, since 1993,I just get worse and worse, and can do nothing.

    Constantly trying to do more,and then getting sick, is one of the symptoms of CFS. When I start feeling bad about the little I can do, I remind myself that, that feeling is a sympton.

    Good luck, and a big hug,
  7. Kim

    Kim New Member

    I have chronic fatigue and also Meniere's. I'm dizzy 24/7 and very off balance. I'm still teaching at a local's full time but I only work 25 hours a week. Most of my classes are online so I manage. I can work when I have the energy.

    I hire someone to clean. We live in a small condo, no kids, just two cats. I grocery shop a few times a week but do most of the cooking on Friday. My husband will eat anything and never complains.

    My life is nothing like it used to be but I'm thankful for my blessings and have hope in the Lord.
  8. elastigirl

    elastigirl New Member

    I haven't had a really bad day in nearly a month (knock on wood,) but here is how a bad day goes:

    Wake up. Pain, exhaustion. Take a pain reliever, have a little coffee, then eat breakfast, feed son (cereal).

    Housework is prioritized -- literally -- by what stinks the most. I light a candle first as it not only helps with the odor, it calms me a bit.

    Dishes in the sink? Load them into dishwasher. Garbage full? Empty it. Forgot laundry in the washer, and now the load is stale? Re-start it. Litter needs scooping? Scoop it. That's it -- on a bad day, I only attend to the criticals. (This may sound gross, but my nose is very sensitive. I have a hard time resting if I'm being distracted by a smell from the kitchen, etc.)

    Struggle to make it lunch. Prepare lunch for self and son. (When I'm exhausted, this may be a sandwich and a piece of fruit.) If I didn't have the energy to give son bath prior night, wash him thoroughly. Get him out of pajamas into school clothes. (This can exhaust me for the rest of the day.)

    Get son to bus-stop. If there is cold air or whipping wind outside, I'm done for the day by the time I get back to the house.

    Flop onto bed. Drift off. Phone rings. Answer phone. Repeat from "flop" two more times. Now a headache/migraine has started from stops/starts. Take pain reliever.

    Nap for a 1/2 hour. Someone knocks on door. Attend to that.

    Cell phone alarm goes off. Get son from bus stop. Give him a snack.

    Fall asleep for an hour or two while he plays video games right beside me. Wake up, fix dinner (soup & toast on a bad day.) Play with son (non-physical activity) for a little while, get him ready for bed, start dishwasher, collapse.

    That's a bad day :). On a good day, I might get out. Or I might enjoy a book.

    Having more good days lately. I cook more & better on good days.
    [This Message was Edited on 04/23/2006]
    [This Message was Edited on 04/23/2006]
  9. Michelle_NZ

    Michelle_NZ New Member

    I was in remission from CFS until June 05. My health started deteriorating, spiraling out of control until December. I took a month off work, hoping to "recover" and start the new year fresh, but when I went back to work in January, I was even worse, and by the end of Feb 06 I could only work about 15 hours per week and the rest of the time was bedridden or housebound, with full blown CFS symptoms.

    I decided to take 3 months off work to try and pull myself out of this pit, and am due to return to work in June (it's looking unlikely at this stage... sigh).

    Since I stopped work nearly 2 months ago my life has changed considerably. The effects have been devastating to say the least.

    Like others, I have to schedule outings in the mornings, and no more than one per day, or else I pay for it later with post exertional malaise for at 2 or 3 days - awful!

    I can't plan anything at night. I usually feel a bit better in the mornings, but by lunchitme or mid afternoon the migraine is beginning, and the exhaustion and fatigue starts to set in for the day. By 5pm I am usally a "write off" and I spend the next few hours not moving on the couch, waiting until a decent time to go to bed and try and get some sleep.

    During the day, I typically spend time reading, on the PC (researching CFS, on this board and others like it, emails etc), watching TV.

    I managed to complete a half day meditation workshop about a month ago, but I have been really slack and not even done one session since - so I need to make a committment to myself to start doing it - even just 10 minutes a day would be a good start.

    I have found having CFS to be the most lonely and isolating experience of my life.
  10. ilovepink4

    ilovepink4 Member

    bad day- get up, get breakfast for 2 sons, set out their clothes, pack their bags, nag them to brush teeth, nag them to hurry hurry hurry....daddy's ready to leave!!!kiss 16 year old, check out her outfit:O)...kiss boys and they go...pick up junk on floor in front of door, clean up breakfast mess, talk to daughter's personal care attendant, go back to bed until 1:00...per. care attendant leaves so i rest and get up to get what ever my daughter needs, take her to the potty, feed her a snack, get dropped off by dh...if i am lucky , he will be done from work and watch the boys...he makes supper and cleans up...i help boys with homework...dh does there baths..and gets them to go to bed..i do laundry in between resting...also, watch tv, do computerwhile in bed, read,sleep,take the dog out, feed the pets,
    i hate talking on the phone now which is good because my friends have forgotten me...i really hate answering the door...i stay in my pj's most of the time...bad habit i am thinking of breaking....bath for me is at night...i stay up really late, like 1:00 or 2:00 am...then sleep umtil 6;30 AM...I GET up a million times during that turn my dd or get her a drink...or go to the bathroom, or take my chihuahua out, or break up a scuffle betwwen the cats and my dog...sometimes the boys need me at night for whatever...

    on a good day, i run my ass off...doing errands, mostly, getting my hair done, nails done, then i pay for it for a week or two...

    so, my life is just spent trying to lay in bed with constant interruptions ...i would do nothing if i could because i am miserable every minute i spend out of my bed...the people that can drag themselves to work baffle me...i can barely drive when i get really bad so i could not function at a job...i would just sit and cry at my desk!!!thank god i have a husband that supports me! i have been a stay at home mom for 19 years...good thing that we are used to living on one income! ok, i'll shut up...
  11. caroleye

    caroleye New Member

    Waking up & knowing my limitations is my worst "mindset", so try not thinking!! Stumble to the bathroom & put my clothes on; groaning as I go....... to the kitchen, make my coffee & feed my dog.

    Then to the & puter....that distracts me for an hour or so (try not to overdo).

    Takes me about two hours for my brain to kick in; then it's a few errand phone calls. Talking is a no-no for me, so limit that.

    Training myself just to do what presents itself each minute. Housework, cooking, shopping are long gone. Luckily have help with that. HUGE help.

    Husband is spending more time at home with me as this last year I've deteriorated. So I will take a ride with him occasionally; knowing my back will be out when I get back.

    Moved 4x in the last 2 years, so there's little things I can putter to do, and now that our gardner put some flowers, etc., I occasionally get out there & mingle with the birds, bees, deer & plants. Heard this feeds our "calming" GABA chemistry, and nature has always been my best friend in addition to animals.

    Grab simple lunch; have a 2nd bath & by 2PM it's T.V. Have a caretaker come in at 4, so have help & an upbeat, young one around til bed.

    I do have a few good days when I can get in my old truck & drive a few blocks to see the horses. Last year I could actually still ride, but we've been rained out this year.

    Sometimes I just "pace"; wondering what the H is this all about.........but after 20+ years of it, still no good answer.

    Just glad I'm as old as I am; feel incredibly sorry for the younger ones who have their life in front of them. Just not fair!!


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