What is your CFS day like?

Discussion in 'Fibromyalgia Main Forum' started by adberens, Nov 8, 2005.

  1. adberens

    adberens New Member

    I was wondering how other CFS people function. I get up each day around 8 or 9am and by 11am I am back in bed until 2 or 3pm. I try to stay up until 8pm to be company to my husband.

    I have learned that this way I can function while I am up; even if functioning means spend most of the time on the couch. I try to take a walk. I volunteer reading at school for an hour and a half 2 days a week. I update our church's web page and do other things when I can.

    Today I missed my nap and I am a wreck. It put me over the edge emotionally and physically.

    What are your days like?

    ADBerens
  2. beth0818

    beth0818 New Member

    weekdays...
    i get up around 7:45 feeling exhausted and take my dog out to go poddy
    take a shower and get dressed for work.
    i usually start to feel better around 11am on good days....by 3:30 i am usually ready to crash but have to push through as i work until 5p. i have had a few bad days where i had to nap at lunch or go home early. i don't get much done after work so my house is a mess all the time....dirty clothes and dishes...dog toys everywhere...dust
    i go to bed between 9-10:30

    on weekends i take many long onderful naps and try to make myself go outside a little for fresh air
  3. pinkstar

    pinkstar New Member

    i dropped 2 courses due to the fatigue and pain.. i am now in only 2 night classes...

    i wake up at about 9 or 10am or so... i take pills, get breakfast and then lay down on the couch and go online... if i have enough energy i take my shower... then i law down some more... blow dry my hair... lay down some more... then i try to do some homework, grocery shopping, or something productive... then i take a short nap... then i just lay around watching tv or i go to class... that is pretty much my life.. i dont go out much.. and if i'm very active, i get the same way as you do..

    the other day my boyfriend had to go to the mall to return pants AND we had to go grocery shopping... i could hardly walk towards the end of it.. :
    i truly do hope our days get better somehow!

    -Lauryn
  4. Empower

    Empower New Member

    You sound like me!
  5. LISALOO

    LISALOO New Member

    I get up about 8-9 am. Play on the computer for an hour of two, feel a little better from 11-3. Usually sit in front of the tv or read all day, if I'm doing better. Otherwise I'm in bed. About 7:30 at night I completely wake up for hours, the best I feel all day, totally frustrating. Don't get out of the house too much.
  6. greatgran

    greatgran Member

    I never know from one day to the next what my day will be like..Most of the time I get up around 7 am get a cup of coffee,ck my e-mail etc..If I am haveing a good day I will take a shower and try to pick up around the house..Then I sit and want to really do some heavy cleaning but that is a no,no. If I have any errands to do I will try to do them before lunch..Now this is on a good day..

    By noon I usually go to bed for a couple of hours..Then get up and try to fix dinner..or think what I can order for carry out..I try to stay up with my husband but sometmes after dinner I have to go to bed..I don't sleep very well I am usually up and down 2 or 3 times a night.
    Sometimes I can't sleep get up and get on line..

    Now this is on my good days..On bad days I get up and go to the bath room when I have to and spend the day in bed..

    There are days I don't answer the phone just don't feel up to talking..

    Oh, how I dread the holidays but I have said that this year no cooking or decorating I just can't do it anymore. I tried last year and when the family came I was in bed..The food was ready but they served themselves..My husband's family comes from out of town and usually stay over but I have told him not this year and he thinks I am being mean..So they probably will stay but I am not cooking..

    Guess I am turning into a bad person but they don't have a clue how hard it is for us to function from just day to day...
    I don't see how anyone can work..
    I think we each have different degrees of the cfs..The anxiety and depression is another thing that keeps me from doing...

    Hope to hear more from others.
    greatgran
  7. pepper

    pepper New Member

    I get up sometime between 8 and 11 a.m., usually around 9 a.m. I watch TV for company while I have a cup of tea and try to wake up and get rid of the horrible pain that I have first thing in the morning.

    Then I struggle to make breakfast and eat it. Then I rest. I then have a hot epsoms salts bath and get dressed. Then I rest.

    By this time it is shortly after noon. If I am having a good day, I will do a couple of errands. If I am not, I lie on the couch and listen to music or, if I am up to it, read a bit. I have something to eat sometime in the afternoon and call that "lunch".

    I am back in bed by 4 p.m. and then try and decide on supper. If I have energy, I make it; if I don't, my husband might make it or I have a salad out of a bag.

    I start to feel a little more energetic around 9 p.m. but have to think about trying to get some sleep. I go to bed at 10 p.m. but sleep very little.

    What a boring life!
    Pepper
  8. whoachief

    whoachief New Member

    During the week I get the two 5 year olds up at 7:45. They get dressed & eat breakfast and get on the bus at 8:30. Then I get the 2 year old up and take him to "playgroup". He has to be there at 9:00. I come back home (about 9:15) and lay down until 11:15 when I go back to get him. Bring him home & spend a little time with him. Usually about 12:45 or 1:00 we take a nap. I get up at 3:30 to get the other two in from school & then they lay down until 5:00 and so do I. Kids all go to bed at 8:30pm and I usually get there around 11:30 or 12:00. That's pretty much my day. Sometimes I can cook dinner, otherwise we eat out or my husband cooks. I usually do 2-3 loads of laundry a day but someone else has to fold & put away.
  9. wangotango

    wangotango New Member

    i am up at 10AM AND GO HELP MY DAD IN HIS BUSINESS, WELDING, WORKING ON SMALL GAS ENGINES, MAKING HYDALIC HOSES AND WAITING ON CONSTUMERS. I LIVE IN A FARMING COMMUNITY AND THIS TIME OF THE YEAR IS VERY BUSY, THEN I HAVE A BAD TIME MY FAMILY HAS TERMED THEM "BILL IS DOWN" I DONT LIKE THE TERM BUT ANYWAY. IT USUALLY LASTS 2 TO 5 DAYS THEN BACK TO WORK. I HAVE A BDA HABIT OF STAYING UP LATE BECAUSE IFEEL BETTER AND I AM HOOKED ON THE XFILES. THAT'S ABOUT IT YOU ALL. NOW KEEP IN MIND I WAS DXS WITH CFS IN NOVEMBER OF 2001, BUT BACK THEN I WAS LUCK TO TAKE A SHOWER AND EAT.
    BE WELL BILL
  10. OptimusUndead

    OptimusUndead Member

    offtopic but... pinkstar... nice to see soemone else my age on these boards :) Guess i'm not the only one who has dropped classes over CFS/FM :)~ i'm from notrh jersey too and was taking Graphics LOL .. ironic....


    My days are insanely boring lately, not the worst things, but the worst at the same time. I've decided to quit my job while i try a new Chelator with DETOXAMIN.. Depending on teh week, i wake up at somewhere between 12pm and 3PM (3pm today) I always get a cup of coffe now that i'm not working, and sit in front of the computer for hours on end, while turning my head back to watch tv if anything good is on. :Lately i've been under extreme stress over trying to find money for car insurance, or if i want to start working again, or if the same cycle will start again if i do... will i ever be better enough to go back to school") I've been thinking about these things all week!..I haven't really left my house, so exercise is sparse... Then i'll try cleaning and organizing, get frustrated because i can't think straight and stop. Usually my parents are home around this time, so that usually starts seomthing, because i feel they dont understand the situation most of the time, even though my mother gives tons of support.. anyway.. i stick on the computer playing games untill maybe 3 or 4 am theni take my sleeping pills and hope to get a decent sleep (during those schedules where i sleep too late)

    i could write a book on this..
    [This Message was Edited on 11/08/2005]
  11. KelB

    KelB New Member

    Rests are absolutely vital to me.

    I have a very set daily routine, as suggested by my OT. The way she explained it, CFS has caused my body to lose track of when it's supposed to be relaxed and resting. As a result, my body is on a constant state of alert; it never rests and doesn't want to sleep meaning that I've got into a downward spiral of wakefulness and exhaustion.

    Because I've lost my "automatic" controls, I needed to set up a manual system so that my body has set times when it knows that it is expected to shut down, either to rest or to sleep. This means that rest periods, bedtime and waking up must all happen at the same time each day. On a working day (4 days a week), my routine is:

    07:00 Wake up, shower, have breakfast
    08:00 Arrive at the office
    08:00-10:00 Work
    10:00-10:30 Rest #1, taken by going to sit in the car and doing breathing exercises, meditation,, listening to quiet radio or relaxing music/sound effects.
    10:30-12:30 Work
    12:45 Arrive home
    13:00-13:30 Rest #2, taken by lying on the bed and relaxing as per Rest #1
    13:30-14:30 Lunch, work at home
    14:30-16:00 Light activities (e.g. washing up, dusting, tidying, watching TV, Internet etc), for no longer than 15 minutes at a time.
    16:00-16:30 Rest #3, same as Rest #2
    16:30-19:00 More light activities
    19:00-19:30 Rest #4, same as Rest #2
    19:30-22:30 More light activites & if feeling well, can go out for the evening to visit friends etc.
    22:30 Start bedtime routine
    23:00 Go to bed

    Heavier housework like hoovering, laundry, taking out the trash or shopping, is limited to non-work days so that I can take longer rests to recover.

    This routine might seem restricting, but it has allowed me to regain part of my former life instead of wanting to sleep all day. My success is due in no small part to my employer, who has allowed me to go part-time with no set date to go back to full time work, and who lets me take uninterrupted rests during the day.

    As my recovery continues, I'll be able to have more of my rest periods by just taking myself somewhere quieter rather than having to lie down. Eventually, I'll be able to gradually reduce the time taken up by rests, then hopefully do away with them altogether.

    At the moment, it's all about giving my body manual cues that it should relax or prepare to sleep. While I stick to the routine it's fine, but woe betide me if I miss a rest!
  12. greatgran

    greatgran Member

  13. upnorth

    upnorth New Member

    Interesting post, it's interesting to see the variety of levels people are functioning at.

    This isn't easily answered for me because I have remissions and relapses. On my Dr.'s function scale I'm anywhere between a 4 and a 7 (depending on the time of year).

    I do however, try to keep a fairly strict resting scale. Right now it's fall and for the third year in a row I'm in remission (6 and 7 out of 10). I try to rest MORE than I feel I need to - but as many of you know, this can be hard.

    8:30-9:00 - Wake
    I do my errands and busier stuff in the morning b/t 9 and 11am. This is my high energy time of day.
    I also have a morning walk
    11:30am - 1/2hr rest.
    Lunch
    reading, computer
    1:30pm rest
    Depending on energy - errand etc. or stuff around home
    4:00 rest
    walk, TV, Dinner
    6:30 Rest
    TV, phone calls, Read
    10-11pm - Bed

    I always walk 2X a day. Right now I'm 30-35min of walking total, but even if I'm very weak and quite sick I'll try to walk even just a couple minutes 2X a day. I never increase my walking by more than 5min.

    I'm taking only one class - it's one night a week. If I make it though successfully, next semester I'm going to add 2 or 3 hours of volunteering a week (and possibly another class)


  14. kbak

    kbak Member

    My day starts with with waking up feeling tired. Even when I get a good sleep, I never wake up feeling refreshed. I'm lucky, I do have enough energy to get through the day, I think due to not having to work, good diet and good supplements. I don't have enough energy to do more than my errands and minor housework.

    Everyone I know works, so I really don't have any company. I look fine, and sound fine, so people don't understand that I'm sick. Because I'm not working, people think I should be available to do all kinds of volunteer tasks. I don't mind doing something when I feel decent, but it's hard to explain why I'm not helping at a funeral dinner, when I'm having a bad day. I've had people say get a grip.

    I think it's the brain problem's that make life the hardest. I'm slow to reconize people when they wave to me. It takes an extra few seconds for it to click who they are, but by then, they've already passed. It appears I'm unfriendly. Having this illness is a no win illness.

    I do try to balance this with taking time to count my blessing. Things could always be much worse. I am greatful that I have a home we own. I have never gone hungry. I do have health ins. I don't have to work, so I can take it easy. I do try to remember to thank God for what I do have, and not complain about what I don't. ( Doesn't alway's work that way :)

  15. Theresa03

    Theresa03 New Member

    I don't know how I do it some days....

    5:15 alarm goes off-try to un-stiff my elbows
    5:30 actaully get out of bed....and take a HOT shower to loosen the muscles
    6:30 go downstairs after getting ready and taking care of cats
    6:45 drive to work
    7:15 - 3:30 work
    4:00 home or work out at gym every other day(it hleps a lot)
    5:30 think about dinner and what to cook or fiance will cook
    6:30 try to do some house cleaning, homework (full time grad student) talk about some wedding plans or I take a long nap :)
    8:00 asleep downstairs with the dog
    10:00 transfer to bed upstaris to finish sleeping for the night and hopefully won't wake up more than 3 times

    I take lots of naps and when I'm having a good day I try to take advantae of it but without over doing it :)
  16. busybusymom

    busybusymom New Member

    Right now I am too tired to even tell you all what my day is like, and I find it pathetic that I can't take the time to share my day with you all!!!

    My day sounds like many of yours - exhausted by mid-morning and/or early afternoon.

    One thing that I think is important, STAY ON A SCHEDULE!! I have gotten off mine (bedtime and wakeup time), and I have been feeling awful. Don't know if it's due to change in schedule or it's happening just because it's happening.

    Jennifer
  17. Gernmeinschatz

    Gernmeinschatz New Member

    Hi all,

    Just joined this message board. I have been suffering with CFS for 15 years; I got it when I was only 16 years old. Anyways - onto the subject matter at hand, my day is as follows:

    a) If I do not have classes, I remain in bed until about 2-3 in the afternoon (weekends). I wake up, and I have about a one-hour window during which I might be able to get something productive done with a clear mind. Then the rest of the day is spent ploughing through whatever it is I have to do, like laundry or homework. It is sheer hell. I try coffee and have tried ephedrine but that just makes my heart go all weird and doesn't work anyways.

    b) If I do have classes, I drag my sore, tired body out of bed at about 7:00a.m. If the class is absolutely not essential (i.e. lecture notes are posted online anyways), I entertain a brief thought of having a shower, decide that I'd be too exhausted after, and then roll over and wake up at about 3-4p.m., feeling guilty that I didn't go to class.
    If I have to attend (like a lab or clinical placement), I force myself out of bed, with every joint and fibre of my being protesting loudly. The only energy I have left is pretty much used up after the shower, and I try to sleep on the subway, making sure I wake up before my stop. I spend my class time trying to pretend to the world that everything is normal, because nobody gets it anyways. I try desperately to sleep 1-2 hours before the next class and am lucky if I make it to the second class. I get home with no energy left to spare, and sleep until about 11p.m., realize I have to do homework, and try to make the most out of the 1 hour of "clear-mind" I might experience. Try to fall asleep before 3a.m., wake up, do it all over again.

    I live away from my family, I have no friends, no significant other, nothing. No energy for that sort of thing.

    I just wish I could ditch my life and live in a seniors' residence. At least I'd be operating at the same pace, with much of the same capabilities. I'm serious. I really do like the elderly and think that I'd have a great time.
  18. rockgor

    rockgor Well-Known Member

    'cause generally not much happens.

    Got CFS 25 years ago. Gave up practicing law, but worked part-time. The last couple years could only work 2 hours a day.

    Now I am retired, but haven't the energy or the money to do anything. Now I'm buying pills w/o group insurance. Just paid over $400 for a bottle of Effexor. The cost of my medications is about 80-90% of my Soc. Sec. income.

    I expected to have 2 hours of energy a day, but even that is gone. Most days I go nowhere except next door to feed the neighbors' cat.

    I have become the kind of pathectic case history I used to read about.

    Well, at least I've kept my sense of humor and my stunning good looks. (Hysterical laughter.)
  19. vickiw

    vickiw Member

    It's been interesting reading about everyone's schedule. I'm on a 6 month disability leave from work. I foolishly expected that after a few weeks off, I'd be almost as good as new...ha! Not! Like others have posted, I've found that adhereing to a fairly strict schedule is very helpful.

    For now, my schedule is:

    5:30 - 6:30 AM - wake up, do breathing exercises in bed.

    7:00 AM - get up

    7 - 10:30 - eat, shower (every other day...daily is too tiring but a shower seat helps). Read the newspaper and do the daily puzzles (trying to keep the brain in gear!). I do anaerobic exercises 3 days a week. I'm up to 6 reps of 5 exercises and 2 stretches. The exercises are monitered periodically by a physiologist who has CFS and has years of experience working with PWC.

    10:30 - 10:45/50 - rest. Watching TV or reading is NOT rest for me...those activities take energy. Rest is totally quiet, lying down, and doing breathing and relaxation exercises.

    11:00 - 12:00 - make a healthy lunch. lots of vege's. Eat.

    12:00 - 2:30 PM - depends on energy. May do a little gardening or housework, but usually just watch TV/go on the computer/read.

    2:30 - lie down, rest with relaxation CD.

    3:00 - till bedtime. Watch TV, read, go online, talk on the phone, help with dinner. (more breathing exercises at 4:30). 3 short walks/week.

    8 - 9:00 PM get ready for bed, read, breathing exercises, sleep (yay!).

    The breathing exercises, which I do 4x daily, take only 30 seconds. They've really helped the shortness of breath and air hunger - I no longer suffer from those. I've cut out sugar, white flour, caffeine and processed food. My energy level, what there is of it, is much more consistant.

    I dread going back to work full time because I feel I have a handle on this right now, even though I'm far from cured. Before my leave, I felt I was one of the living dead!

    Vicki
    [This Message was Edited on 11/11/2005]
  20. Sandyz

    Sandyz New Member

    I get up at 6:30 on week days. I have to get my two boys up for school. The bus comes at 7:20. I have breakfast and coffee with hubby. I check the internet. Try to pick up a little if I feel up to it. I usually do one or two loads of clothes a day. I watch some tv inbetween. After lunch I am very tired so I usually take a nap from about 1:00-4:00. The kids get home at 4:30. We have supper. Sometimes I take a walk after supper. Feed the cats and dogs and play with them a little bit. I usually go to bed aound 11:00.