1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Leptin
Andrew Gladman reflects upon the recent IACFS/ME conference and the buzz surrounding a small molecule, leptin.
Discuss the article on the Forums.

Has anyone managed to set up a fairly consistent routine?

Discussion in 'Lifestyle Management' started by November Girl, Aug 16, 2012.

  1. November Girl

    November Girl Senior Member

    Messages:
    285
    Likes:
    112
    Texas
    I'm curious because I would like to manage it. My symptoms tend to fluctuate a lot. When one calms down, another pops up. Right now it's 9am, and I'm ready to go back to bed - and maybe get some sleep this time.
  2. SOC

    SOC Back to work (easy, part-time work)

    Messages:
    4,405
    Likes:
    4,288
    USA
    I have, with good sleep meds. POTS treatment has helped, too. The big trick for me, though, was scheduled resting/napping. If I wait until I know I'm tired, then I end up resting at different times and messing up my schedule and sleeping weird hours at night.​
    I finally admitted that many afternoons are worthless to me -- I don't function well if I stay up and I wind up sleeping in the early evening which screws up everything else. I bit the bullet and told everyone (including myself) that afternoons are my downtime so I schedule nothing, don't answer the phone or door, etc, etc. Assume I'm sleeping.​
    When I was feeling more poorly than I do now, I went to bed for a supine rest at 1:00 or 1:30. That means completely supine, no reading, internet, tv -- just eyes closed rest. If my body needed sleep, I fell asleep within that hour and slept as long as my body needed. Sometimes it was a hour, sometimes it was 5 hours. If I didn't fall asleep within that hour, then I would rest doing something easy and quiet -- read, crochet, maybe internet if I was feeling particularly good.​
    That gave me a good morning (I could eat 2 meals and tutor for about 3 hours) and a decent evening to spend with my family when they got home from school/work. ​
    As I got to feeling better, I've slipped my supine rest time to 2:00 or 3:00 because I don't fall asleep as much or sleep as long when I do. Still, my official rest time is "the afternoon" and I very rarely schedule anything then.​
    This fall I've actually scheduled to work away from home :aghhh: from 10:00 - 1:00. That gives me plenty of time in the morning to wake up on my own, get all my pills and electrolytes and minuscule exercises in and starting to work. If I try to get out earlier, my meds and fluids and electrolytes haven't done their thing yet and I'm not sufficiently functional, IMO, to drive or teach well. We'll see how this works. ;)
    taniaaust1, BEG, justy and 1 other person like this.
  3. hurtingallthetimet

    hurtingallthetimet Senior Member

    Messages:
    612
    Likes:
    112
    im tired all the time..always pain and exhaustion sometimes worse than others...looking back to year ago i cant do as much..

    its hard for me to have any routine...because these illness are so crazy..i have kids...its very busy in summer with kids taking to appointments etc...so that exhaust me more...

    its good to set routines i think...if you can...i use to love nature, jogging, walking etc...occasinaly i will take walk with family only cause of pain medications and anxisty meds but still it gets me out occasanily...feel guilty i cant do more..
    but try to do a little housework so kdis hubby dont get more piled on them and i lay down in between...try to chekc on boards daily even if cant always post...it helps to have a connections...

    light bothers me alot...headaches migranes...but sometimse ill look out window watch for stray cat that comes around...and squirells...down side is neighbourhood houses crammed packed together so when in bedrooom and i want to see if animals birds out look at sky etc...

    great post though...i think its great if someone can set routine...espically if they were like i use to be...i liked routine...not changes
  4. alex3619

    alex3619 Senior Member

    Messages:
    5,969
    Likes:
    7,837
    Logan, Queensland, Australia
    Does consistently stuffed routine count? ;)
    taniaaust1 and November Girl like this.
  5. November Girl

    November Girl Senior Member

    Messages:
    285
    Likes:
    112
    Texas
    SOC, that's great news!

    hurtingallthetime, I'm sorry you have to go through all this. i understand about the guilt all too well, but it is really undeserved. Most of us with this illness do more than we should, even though it's far less than what we want to do, or what we think we should do. People with broken legs don't try to run even a short jog. People with broken mitochondria shouldn't either. You're doing the best you can with the body you have! You can't ask more of yourself than that. :thumbsup:

    Alex, a stuffed routine is about right! And the comment matches your photo perfectly!:)
  6. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,123
    Likes:
    1,362
    London
    I manage pretty well for a while, then whallop an infection or virus strikes, then it goes haywire.

    What helps me is to find the best times of the day and night to sleep and be active then try to stick with that, regardless of what the rest of the world is doing. I get more success in a continuous routine that way.

    So for me, sleeping between roughly midnight and midday. Then my productive time roughly from 5pm until 11pm.

    I've had a sinus infection over the past few days and that has gone to pot. In a few days hopefully this will be over and I can get back to normal.

    Spent years trying to fit into a 9-5 but my health just got worse. Even being at home and trying to fit into an early rise made my health, much worse.
  7. alex3619

    alex3619 Senior Member

    Messages:
    5,969
    Likes:
    7,837
    Logan, Queensland, Australia
    I put myself into a 9 to 5 routine for most of three years when I went back to university for my biochemistry degree. A lot of that time was spent with my head on a desk in the library between lectures (not asleep, just resting), but even so I never had enough rest, because I never compensated by sleeping more at night. Not in three years. At times when I was more exhausted the incidence of syncope from my NMH went to crazy levels. I just kept passing out on stairs. The problem was that the University of Queensland has stairs everywhere - its an old classic design. One semester I found I had only one lecture on Tuesdays. I was often so exhausted that I never went to that lecture - it was too much effort for one lecture. The travel to and from university alone was more than two hours. The only reason I even considered university again was due to the boost I had from Immunocal, but I had to stop taking it at the end of my second year due to intense side effects.

    Bye, Alex
  8. taniaaust1

    taniaaust1 Senior Member

    Messages:
    6,754
    Likes:
    3,331
    Sth Australia
    If you dont have sleep in "some kind" of routine be it even if its getting to sleep at 5am and then waking 8 hrs or so after that every day, I dont think you can have any hope of getting things into any kind of routine due to lack of any kind of symptom consistanty. So I think treating symptoms comes first when it comes to trying to get routine and having the right activity balance for you is also very important.

    My sleep routine is currently going to sleep between 1am-3am as that is when my body can do so with only taking melatonin alone (otherwise I need to take strong drugs and forcing my body into a routine it doesnt like to do). Im out of bed by 12 noon (things have improved so lately Im usually out of bed by 11am)

    My routine is like currently like 2 days on then 1 or 2 days off break, then 2 days on again etc (I used to only manage 1 day straight of doing things without getting post exertional malaise but now I can manage two without causing myself to get worst :)

    Mondays .. my boyfriend visits from 11am to about 4pm and I'll go to a medical appointments, library, sitting down having hot drink, chatting with him etc The rest of day/night is rest time.

    Tuesdays.. Home support comes and I spend 2.5hrs doing things (shopping etc not all standing activities).. I actually do 3.5hrs worth of getting things done on Tuesdays (I actually time and wont allow myself to go over that in activities as otherwise I go downhill) . 3.5hrs is my new limit up from 2.5 hrs per day..

    Wednesday.. complete rest day to get over monday and tuesday activities

    Thursday (same as Mondays).. activities/boyfriend comes
    Friday (same as Tuesdays).. home support worker (3.5hrs worth of doing things)
    Sat .. complete rest day to get over thursday and Friday activities

    Sun... one spare day which I use as rest. I see this as like my
    healing day".. I arent resting to get over anything (which then is like catch up rest time) but just resting.. to have myself as well rested and as good as I can be. So Im at my best and feeling great when Monday comes to be doing things.

    (On my complete rest days.. I do get out of bed but I dont get dressed, dont do hair, dont shower, dont do any housework... I do thou cook if Im feeling good to be doing that.. otherwise I eat the prepared meals my carer made or helped me to make on tuesdays and thursdays). This routine stops me from getting post exertional symptoms coming in the next day, as it keeps me within my current limits. Its good to have fairly severe ME but be able to stay within limits to not trigger postexertional stuff and give my body a chance to improve more with time.

    With good management and better treatment. in only the past 2 weeks Ive gone from having a maximum physical activity level in 24 hr period of 2.5 hrs to 3.5 hrs and also now at times are sometimes even waking up at 8.30am!! (I didnt wake up until 10-10.30am at the earliest only a month ago.
    A couple of months before that .. my activity level in 24 hrs at the most was only 1 to 1.5hrs (2 if I was very lucky) in a 24 hr period. Its a slow process but really looking after my needs Im working in the right direction and improving (before I was like stuck at a certain level, thou stable it wasnt moving forwards)
  9. November Girl

    November Girl Senior Member

    Messages:
    285
    Likes:
    112
    Texas
    tania - thank you for sharing in such detail. I really like the 2 day aspect of your planing. It's given me a lot of food for thought. I've tried to set up a routine several times in the past, but always based it on a scaled-down version of what I would like to do. Right now I'm paying a lot more attention to my ups and downs, and getting better about listening to my body's quiet signals - as opposed to waiting until it's screaming at me.

    I hope to have a trial routine to try for next week. Luckily my husband and I both seem to have stabilized on a bedtime of 3am or so. He's a night owl, but also has a non-24 hour sleep cycle, so periodically his sleep pattern goes utterly crazy for a month or so, until he cycles back to a norm of some sort.
  10. taniaaust1

    taniaaust1 Senior Member

    Messages:
    6,754
    Likes:
    3,331
    Sth Australia
    I tried in the past week to add just one hour of on feet activity into each of my rest days which come between my activity days, seeing I was doing so great with my routine and feeling like I certainly had the energy to do so. Logically I thought that would of been okay.. after all it was only doing just"one hour" on a rest day when I manage up to 3.5hrs currently on other days.

    It ws fine on the first and second rest days doing that.. also seemed fine on my third rest day of adding 1 hr of on feet activity (more housework)... but then that night (by this time it was a week without a full rest day).. well it hit.. I got an old symptom back and was up all night with strange leg/spine symptoms and hence couldnt then sleep due to discomfort till 4.30am.

    This has shown me that I still do need at least one full rest day per week (possibly two) or my post exertional symptoms start kicking in again. (they really can creep up on you!!!). Its also interesting to me how the body can need such long rest breaks during the week to maintain my current activity levels well for the rest of the week. I seem to need full 24 hr periods of rest at times to stop any post excertional symptoms from coming in..

    Next time I experiment with increasing my activity for the week. I'll only add an extra one hour activity in on just one day for the week.
  11. November Girl

    November Girl Senior Member

    Messages:
    285
    Likes:
    112
    Texas
    I established a guideline for a routine, and have been paying attention to my activity & symptoms. It appears I can do even less than I thought! Good thing I almost never have to do anything at a specific time. My starting point was Tania's routine, though mine is not as specific as hers.

    My scheduled Rest Days are Monday & Thursday. I do get up, but don't shower or dress, and do very little. I spend part of the day in bed. In the evening I take a bath. If I'm too tired to take a bath or shower, then I need to rest the next day as well. Last evening my heart rate was above my targeted max, so I went right to bed, and rested again today (12 hours of good sleep, yay!)

    Tuesday & Wednesday - activity days, getting dressed & being more physical.

    Friday, Sat & Sun - sort of play it by ear, with at least one Rest Day.

    I have more specific guidelines for amount of bedrest and activity, but just realized I haven't been following them. That could be why I needed this extra rest day on top of a few others. :eek:

    ~ I'll try to be more attentive this week, and stick closer to my plans. I guess I'll need to actually look at my printout often.

    It is a relief to have planned days to not have to dress, and it's also nice to get dressed & feel presentable on my activity days. I have hopes of this routine thing working out! Of course symptoms always wax and wane somewhat for many reasons out of my control. I do plan to respect those flares, but would really like to have some idea of how I'm going to do.

    The last time I tried to plan a routine, I tried for more or less the same activity level each day, with one day of rest. That didn't work at all for me.
    taniaaust1 likes this.
  12. taniaaust1

    taniaaust1 Senior Member

    Messages:
    6,754
    Likes:
    3,331
    Sth Australia
    Looking forward to hearing how you go with your new plan.

See more popular forum discussions.

Share This Page