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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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Your typical day

Discussion in 'Lifestyle Management' started by river, Jan 7, 2011.

  1. river

    river

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    For those of you who don't work and spend most of your time inside or at bed and never go out or just go out from time to time, what's a typical day of yours like?

    What do you do when you wake up?

    I feel like the first half of the day I'm just idle and things start to get going later in the evening and or at night. It's weird because before falling asleep I have dozens of ideas running through my head of things I want to do, read, write, plan. When after my sleep I wake up and I have forgotten everything and don't really know how to start my day.
  2. justy

    justy Senior Member

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    Hi River, because i have young kids i have to get up and get on with the day. Each day for me is pretty much the same and im getting pretty fed up (understatement) with it right now.
    I get the kids off to school, my husband helps and they get picked up by a school bus. Then i potter around doing some tidying, cleaning up etc. Then a rest and usually meditate. Then i have a verey short walk down my drive and onto the track with my dog for 10 minutes (on good days) come back and usually knackered so make a cup of tea and light the fire. Go on computer. Make lunch and eat by the fire and computer lying on sofa. Sleep in the afternoon oin bed for an hour or two.
    Pick kids up from bus - i have to drive to do thios as its a quarter mile walk. Get home and lay on sofa, interact with kids. About 5 pm fix some food or husband does it if unable. After dinner lay on sofa a bit more and maybe talk to family/watch tv. Evening read story to kids in bed, lay on sofa, read or watch t.v.

    Weekends a bit different, sometimes go out for a drive or to visit friends for an hour. Otherwise its same old thing every day. I know i am still doing too much as i still feel very ill. my pacing was better before xmas.
    I really want to do other things but the daily grind of showering and tidying and cooking is all i can manage, so not much space for creativity or fun. You may gather from my tone that i am a bit down so please ignore the miserableness of this post.
  3. river

    river

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    Well, there's something there I would never get fed up with: interacting with kids/family/partner/friends
    Even if I was totally healthy, that would be the most important thing in life to me. And as long as I can interact
    with people I love, everyday is a different day even all the other routines are the same :)
  4. Tia

    Tia Senior Member

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    Get up, make the bed, do the dishes, vacuum if needed, mop the floors if needed, brush my teeth, shower, sit by the computer and eat and then: back to sleep again.. Oh: and feed my cat, clean it's box and feed my fishes and see to it they have clean water.
  5. helen41

    helen41 Senior Member

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    Sleepy Hollow Canada
    I'm pretty regimented. I very carefully "spend" my available energy through the day. If I shower, that's my daily activity, other than my meals. If I have to buy groceries, I know what I will buy and I do it in a smaller store, then that is it for the day, and I won't schedule any activity for the next one. Doing more means I get payback from PEM and just starts things spiralling out of control.
    Luckily I don't have anyone to look after at this point in my life, and actually have a lot of support to look after me. I have cleaners that come, and buy most things online. My days are spent on the couch with the tv, telephone and laptop. I enter online contests, read forums, etc.
    So different than my premorbid activity level. What surprises me (and others who know me) is how accepting I seem to be about it. I don't know why I'm not going stir crazy, but I'm not. I wonder if the ME/CFS affected some kind of complacency centre in the brain. :confused:
  6. Esther12

    Esther12 Senior Member

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    Cooking/shopping takes up a lot of my energy. I think it's good to try to have one thing to 'achieve' a day: that can be sorting out some chore or task, it can be a fun play thing maybe with someone else, or an exercise you thinks might be useful (I've recently been putting a lot of energy in to exercises to help with some recent balance problems). Just little things, but things I've chosen to prioritise.

    When one has not got much energy it's easy to end up spending it on low energy, low satisfaction things (the internet can suck up time and energy without giving much in return... although it's also a life-saver in some ways). That's why I try to think ahead, and come up with something achievable that I particularly want to do that day.

    I know that I don't have the obligations and dependents that many others do though. It lets me be rather selfish with my time and energy.

    I've recently (last year or so) been doing a lot more medical/psychological/CFS reading. I'm not sure how useful that is. Previously I spent this part of my life/energy/mind on militant-Islam or American Conservative Evangelical type silliness, and that was rather more fun.
  7. L'engle

    L'engle moderate ME

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    Usually get up around 9am, est and try to gauge my energy. If it's a better day I go for some kind of a walk, otherwise try to conserve energy through the morning, or else do housework. Afternoon on the computer usually or reading a book, sometimes lie down again for a while. Sometimes I can get some work down in the afternoon otherwise not. Dinner (Luckily my mum does most of my grocery shopping and makes dinner, this makes life much easier for me). Sometimes I visit my boyfriend inthe afternoon/early evening, or he visits, but I can only visit til 8, Back to lying down by 8pm or so. I have to stop reading, movies games by about 8:30 in order to properly be rested. It is very regimented! But I hate having PEM, so I don't try to do much that is beyond this routine, and of course i get PEM even from this amount of activity sometimes.
  8. SOC

    SOC Moderator and Senior Member

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    Pre-Valcyte:
    Wake up about 7am, stay in bed listening to audiobooks and crocheting for an hour or so. If I got up too soon after waking, I had POTS/OI issues.

    If I had a tutoring appt, I'd get up, dress, eat an easy breakfast (yogurt, fruit), and tutor for 1-2 hours. After that I'd sit in the recliner and handle my email and other Internet business. Lunch was something else minimal prep -- one of my student's parents pays me in cold vegetarian lunches. By then I was usually shot and would take a nap for 1-5 hours depending on my state of health.

    If I didn't have a tutoring appt, my "big" activity was taking a shower and washing my hair. That would usually put me to bed for most of the rest of the day. :(

    When I woke from my nap, I usually stayed in bed for several more hours listening to audiobooks and crocheting. Sometimes, if I was doing well, I'd do very little, very light housework -- 5 mins at a time with 10-15min supine rest between.

    Most days I'd used up my energy by then, even with the nap, so all I could manage was sitting in the recliner for the evening. :( Poor hubby did most of the cooking, laundry and rudimentary housework. We paid a cleaning person to do the rest.

    Many weekends I slept whenever I felt sleepy and was in bed or recliner the rest of the day spending time with my family.

    Audiobooks and crocheting kept me from going absolutely mad with boredom during this time.

    After a year on Valcyte
    I wake up about 8a, putter around getting dressed, breakfasting (still easy), doing Internet work, and getting ready for my students. I tutor 1-2 hours most mornings.

    Because I now have afternoon activities, I go back to bed at 11:30-12:00 after a simple lunch. Even if I don't feel tired and don't fall asleep, I rest supine in bed (listening to audiobooks) for 2-3 hours.

    Three days a week now, I teach a 2hr class after school at my house for 6-10 kids. After that it's light cooking (maybe) and back to the recliner for the evening.

    On days I don't have afternoon classes, I take a shower or have doctor, dentist, hairdresser appts. I also sometimes arrange to visit with friends.

    Last fall I did 2 classes a week in the afternoon away from home, had occasional business meetings during the day, and sometimes stayed in bed only 1 hr in the afternoon. That didn't work in the long run, though. :In bed: I stopped improving on the Valcyte and started to have more symptoms.

    Now I stick to a rigid schedule with 2-3 hours bedrest midday, even when I don't feel like it and don't want to. It's what allows me to work about 15 hrs a week, which I need to do now.

    I could do more activity now without crashing, but I'd start a slow downhill slide, if last fall was any indication. I'm paying too much for Valcyte not to get the most I can out of it.
  9. Carrigon

    Carrigon Senior Member

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    I don't have regular days that can be called typical because each day is different depending on how I'm feeling. Usually, it's massive pain in the morning, so I have to sit around taking supplements and magnesium till that subsides a bit. Chores, gotta feed the cat, clean the cat box. Make food. Usually get lightheaded while cooking, so then I'm kind of dead after that. Shower when I can. Rest many times in between doing anything, which totally sux. It's like being a hundred years old. Everything is, take a step, gotta rest, take another step, gotta sit and rest. If I just feed the cat and change her box, gotta rest.

    I go to my usual net haunts online. If I'm feeling up to it, I do surveys and make alittle money. If I'm not feeling good, just surfing, maybe watch a movie.

    On better days, I go to the store, but only a few times a month. And that will kill my whole day with massive pain.

    That's really my life. I have a few people I call on the phone when I'm up to it. And that's really it. I no longer have company because I'm really not up for it. I can't be around people for very long. It flares me up. I just spend as much time with my cat as I can.

    And on bad days when I'm flaring with the light and sound sensitivity, I will put on white noise or that plus earplugs when I can tolerate them and not do much of anything at all.
  10. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    I think it is good to accept this as much as we can, don't get me wrong, I am continually trying to get better, but I just try to control what I can contol and do not let much get me upset, although I have my moments!

    GG

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