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!
California 2014: IACFS/ME Day Four: Translating Science into Clinical Care: 23 March 2014
It is Day Four and the final conference session from San Francisco. In this review we hear from Searcher about the neurosciences session, and PET and EEG analysis, then a study on cognitive functioning, followed by a debate on the revised 2014 IACFS/ME Primer, and then we wrap-up the...
Discuss the article on the Forums.

What are your goals for today?

Discussion in 'Lifestyle Management' started by CAcfs, Oct 21, 2011.

  1. CAcfs

    CAcfs Senior Member

    Messages:
    178
    Likes:
    91
    I need to start trying to get more done around the house, and perhaps just in general. I think it would make *me* feel better to get at least one thing accomplished every day (or at least most days).

    For example someone might state one of these: clean the toilet, call to make an appointment, return a sweater at the store, organize some papers, etc. I may not be the best example, but I was hoping we could draw inspiration off each other! Also, stating things out loud makes us feel more like we actually gotta DO IT! EEEK!

    So please state what you are hoping to get done at some point today, then please report back after you have done it! (or didn't!)

    On rough days, it might just be inspirational to see that others are able to get a few things done, and we can cheer each other on, even if we didn't end up setting a goal for that day. Maybe some of us will become moreso cheerleaders than do-ers? :) Hopefully we will all be a little of both.
    Sallysblooms likes this.
  2. Esther12

    Esther12 Senior Member

    Messages:
    4,876
    Likes:
    4,174
    I think it's useful to set little goals too. When feeling constantly exhausted, it's easy to let time float by (the internet can suck in time/energy too). It's the end of the day here, so I've got no plans for the rest of the evening.

    Today, I've done my pilates programme (nearly - I was too tired to do it all), and did some drawing of people walking down our street. I've got the house pretty sorted recently (I've had more energy for the last six months), and it did feel good getting that done.

    I'm planning to spend less time reading posts here, and more doing more constructive CFS reading/writing (but failed today). That can be my task for tomorrow.
  3. Dainty

    Dainty Senior Member

    Messages:
    1,334
    Likes:
    453
    Washington State
    Great thread!

    My goal for today: sleep without drugs.

    I'm thankful I have meds that can ease the suffering a bit, but I still prefer to go without them as much as possible. This time around I'm somewhat stubborn on the issue, but the greater the sleep deprivation, the greater my chances at achieving it....right? :D
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    5,345
    Likes:
    3,686
    Albuquerque
    This is a funny conundrum, Dainty. I am with you in wanting to sleep without drugs...but the more tired I get (from NOT sleeping without drugs) the more wired I get until the "on" button is just stuck and I have to knock myself out with drugs.

    But, my doc just suggested taking a large dose of tincture of catnip to turn off the sympathetic nervous system, and it has been working...to a degree. Guess I am definitely not a cat!

    Sushi
  5. Esther12

    Esther12 Senior Member

    Messages:
    4,876
    Likes:
    4,174
    No it can't - a friend of my partner is popping arround, and then we're going out to see a stand-up comedian with an abrasive reputation in the evening. That counts as a full day by my standards, so I have an excuse for putting off any 'work'.

    Good luck with the sleeping issues Dainty. Have you tried any CBT type stuff for that? I know someone who have found these approaches useful, even if I would probably suggest reading up on it oneself, rather than looking to any sort of therapist. eg: Trying to make sure that you don't use the time you spend in bed as time for thinking about things, which can then keep you up and start making sleep a worrying thing.

    [edit: They've since said that actually, they don't think it was helpful, and was really just a waste of time. Ah well.]
    Last edited: Dec 4, 2013
  6. Wonko

    Wonko Senior Member

    Messages:
    627
    Likes:
    103
    England
    Surely thats at least 3 things?

    Friend popping round
    Going out
    Watching comedian

    Busy day!

    My goal for today is I'm going to have a bath (lol)
  7. Esther12

    Esther12 Senior Member

    Messages:
    4,876
    Likes:
    4,174
    I've improved quite a bit over the last couple of years. Previously, having a bath would have taken a lot out of me - now it's something I can do and enjoy without much trouble. Good luck with your bathing. I hope it goes well.

    My partner actually got the day of the performance wrong, it's tomorrow not today, so I don't have such a busy one today - which is lucky as I've had a surprise energy dip. Having a bit more energy is a great thing, but it's still unpredictable for me.
  8. Sasha

    Sasha Fine, thank you

    Messages:
    6,999
    Likes:
    4,565
    UK
    I often start a day by making a list of tasks that need to be done (whether it's that day or another) and I tick them off as I go through them. If I get a phone call or letter during the day that I have to deal with, I add it to the list and tick it off for a sense of extra achievement!

    I'm often pleasantly surprised at the end of the day to see how many little things I've achieved - they're usually the sort of things I'd forget I'd done if I hadn't written them down.
  9. Valentijn

    Valentijn Activity Level: 3

    Messages:
    4,777
    Likes:
    5,095
    Amersfoort, Netherlands
    Probably depends on what's causing the sleep deprivation :p If it's high glutamate then it's going to be hard to convince your brain to turn off without some help, and that will keep you up, and keep you awake if you wake up during the night.
  10. ahimsa

    ahimsa Senior Member

    Messages:
    960
    Likes:
    705
    Oregon, USA
    I didn't see this yesterday message. I actually had a couple of difficult goals for the day and I completed them - hooray! My goals were to do the grocery shopping (BIG goal), to wrap a birthday present for my niece (small goal), and then send the package via UPS (medium goal). I got all three things done so it was a really good day.

    Today's goals:

    1. Eat.
    2. Rest.
    3. More rest.

    So far, I have done the first item (I ate breakfast) and the second one. And I think I'll even accomplish my third goal, too! :D
  11. ahimsa

    ahimsa Senior Member

    Messages:
    960
    Likes:
    705
    Oregon, USA
    This is something I've done, too! It's especially helpful on those really bad days when I think I haven't done anything. A phone call that I did not expect (it takes time and energy, it interrupts my train of thought, it sometimes throws me off schedule if there's a doctor appointment or some other errand that I've planned) can actually be a real accomplishment.

    Even though I already know it, I sometimes have to remind myself that I'm operating on a completely different energy level than someone who's normal and healthy. This is one of those little mental tricks that helps.
  12. Nielk

    Nielk

    Messages:
    4,826
    Likes:
    3,753
    Queens, NY
    I'm not sure that this is such a productive thread for everyone. Don't forget, we are all in very different stages of our illness. I am not sue that someone who can't get out of bed, will get all excited about someone else going out to a comedy club. Just my opinion. We need to be sensitive to these feelings. I one want to make a list of chores, they can just do it for themselves and get their own satisfaction. I don't believe that gloating it in other people's faces is a good thing. Sorry.
  13. Wonko

    Wonko Senior Member

    Messages:
    627
    Likes:
    103
    England
    I disagree, just because going to a place surrounded by lots of other people in a confined space , for entertainment, isnt something I have been able to contemplate for a very long time, doesnt mean I begrudge others both being able to do it and getting pleasure from it, this is after all a thread about goals. When I have "spare" energy I use it in ways most pwME would consider as evidence of reckless insanity, and, whilst a night at a comedy club would be close to my idea of hell ATM, I see no reason why people shouldnt use what energy they have in ways they find most fulfilling - it's all about getting the most personal bang for the buck with scarce resources after all.

    But possibly I'm not typical in that I have a severely physically disabled friend who does this sort of thing all the time and wont shut up about what a great time she had etc. so maybe i'm a bit immune, but mainly I'm just glad of any evidence she had a good time, frustration etc. simply isnt in the mix - which isnt to say I havent made the odd comparision re levels of functional disability vs percieved disability (she gets DLA/SDA etc and I dont), but I'm getting increasingly off topic.

    I didnt percieve Esther as gloating and see no reason why she or anyone else shouldnt post about what they've done or want to do.

    edit - today my goal is to finally fill in a GL24 notice of intention to appeal form (to attempt to get bumped up to support group) - this is a HUGE task which is why it's taken me over 2 weeks to get this far (to serious contemplate doing it)
  14. Esther12

    Esther12 Senior Member

    Messages:
    4,876
    Likes:
    4,174
    I certainly didn't mean to be gloating over anyone! I'm surprised that anyone would take it that way.

    Good luck with your appeal wonko. The new systems sound nightmarish.

    I recently sent off a DLA application form, in which I explained that the money could be used to help me go to comedy nights.... I'm hopeful (albeit in a deluded way).
  15. Nielk

    Nielk

    Messages:
    4,826
    Likes:
    3,753
    Queens, NY
    Just ignore what I posted last night. I was going on 2 hours of sleep in 49 hours because I ran out pf my Ambien and even though I took Two Tylenol pms twice, I could not sleep. I couldn't go or call the drugstore because it was the Sabbath for me an I'm not allowed to drive or use the phone. I was in agony like prisoners who get tortured by sleep deprivation. Finally, last night I was able to get it and sleep. I'm very happy Esther that yo are feeling better and able to get out. We are all aware that we each have our personal envelope within our severity of the illness. To see how people cope within their envelope is interesting and I retract my previous post.
  16. Esther12

    Esther12 Senior Member

    Messages:
    4,876
    Likes:
    4,174
    No probs nielk - I know how it is when feeling especially rough. I've accidentally ended up dominating this thread, so I might keep quiet for a bit. Good idea though.
  17. u&iraok

    u&iraok Senior Member

    Messages:
    151
    Likes:
    27
    U.S.
    Not dominating, just talking and answering. :)

    I've been dominating this Lifestyle Management Section with post on every thread! Lifestyle Management is a hot topic for me!

    We're all a little different, but the same.

    I can't go to any kind of events anymore, comedy clubs (even though you laugh and that helps), concerts (no way, are you kidding?!), plays, symphonies, whatever. Maybe a movie once in a great while at my poor husband's begging, if I wear ear plugs but it's still hard.

    Yet I do work 4 days a week. It's hard and sometimes it gets stressed and I get overwhelmed but I'm in a cubicle and I sit and it's quiet and I work along at my own pace and I lay down in a quiet place at lunch and take a nap for part of that.

    I find that even social things with friends and family is way more difficult than work.

    But of course on my days off I have to lay down and do nothing. My goal for those days might be to feed the birds and make dinner. Or water the plants and do a load of laundry. More than two things would be pushing it. But if I can eat, rest and more rest, all the better, I like those goals!
  18. Nielk

    Nielk

    Messages:
    4,826
    Likes:
    3,753
    Queens, NY
    I'm sure most of you heard of the spoon theory?
    In that vein, whenever people talk about staying within our envelope, (not overdoing it)I think of it this way;
    Lets imagine everyone has an envelope. Normal, healthy people get 500 chips in their envelope to spend in a day. Everything they do, they have to give away one chip till they use all their chips up and they are tired and go to sleep. I think that I get on average ten chips a day to use up. Getting dressed is one chip. Going downstairs to the first floor - another chip. Preparing a meal - one chip. So, after breakfast, I already spent 3 of my chips. Now, I have to be very smart as to how I'm going to spend the rest of it. A phone conversation - one chip. If that conversation stresses me out - 3 chips. If the conversation makes me cry -4 chips. If I want to take a bath (I should have done it before I got dressed and came down because now this is going to be very expensive. one chip to go back up. One chip to get undressed. Two chips for taking a bath an another chip to get dressed again. (even if it's just putting on pajamas. Now, I don't know if I have any chips left for more meals in the day. I have to reserve some chips for when my children call me. If they tell me about their problems - it will cost more. That's why I usually stay in bed in my pajamas.
    Oh-I left something out. You cannot conserve chips for the next day. It just doesn't work that way. Come tomorrow, you get the same ten chips.
  19. fla

    fla Senior Member

    Messages:
    234
    Likes:
    38
    Montreal, Canada
    Excellent description of our daily reality using "tickets" Nielk. These limitations can be measured scientifically in ME patients using METS. Just search for METS in this document. Cancer survivors use METS to budget their limited available energy as I mentioned in another thread but don't have the energy to find the reference now.
  20. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,756
    Likes:
    850
    US
    For many things, it's hard for me to plan and focus. Some days are hard and I have to plan it out, because other people are involved, things that depend on other things, or urgent things. But usually I only plan for the next minutes. I'll have a vague idea of what I want to get done, but there's always a good chance it won't be today. Meals define my day sometimes, eating becomes a higher priority as time goes on.

See more popular forum discussions.

Share This Page