Poll Is the Planning Ahead "Muscle" Broken with Chronic Fatigue Syndrome / Fibromyalgia

Discussion in 'Symptoms' started by Cort, May 6, 2016.

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After ME/CFS and/or FM How Good Are You at Planning Ahead

  1. I can plan ahead as well after ME/CFS/FM as before

    2 vote(s)
    7.1%
  2. I'm a bit more muddled at it

    4 vote(s)
    14.3%
  3. My planning ahead abilities got moderately worse.

    7 vote(s)
    25.0%
  4. Planning ahead.....people actually do that?

    15 vote(s)
    53.6%
  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Planning.jpg
    Some years ago I had a temporary breakthrough using transfer factor; it was like my brain was released. I immediately started planning for the future. I thought I would do "X" first, then I would do "Y" then in a couple of months I would do "Z". It was a completely natural process and as the treatment faded it all went dark again.

    I have a terrible time with planning or thinking ahead. I have a hard time even thinking of planning. I'm not talking about a week in advance, I'm talking about the day ahead of me. I think it's partly the idea of "ahead". I'm usually so overwhelmed by the here and now that I have trouble thinking of "ahead".

    This really struck me today because I knew I had a lot of things to do but I just couldn't think of them. It was like a black hole.

    When I make plans - phone calls, things to do, people to meet - I have to be real careful not to forget them. I forget dates to do things all the time.

    I do know of people with ME/CFS who do fine at planning ahead but not me. It's like that muscle was lost.

    This must have to do with problems with executive functioning....

    What are your experiences?
     
    Mary Hamilton, zzz, Rosie26 and 3 others like this.
  2. weyland

    weyland Well-Known Member

    I think we learn very quickly once the disease turns chronic that there is little point in planning ahead, even for the next day, because once the time comes to execute those plans we will likely be too sick to do so.
     
    Mary Hamilton, San Diego, zzz and 2 others like this.
  3. lisaadele

    lisaadele Active Member

    ..am definitely someone who lost this muscle too. I find it very hard to plan and execute plans.

    I feel like I've been hit with a stun gun when it comes to getting organized and laying out plans, whether for the day and especially out in the future. An immobilization sets in. I agree with the being overwhelmed by the hear and now which makes it hard to plan.

    In the past I was very organized and was very much someone who made future plans easily.
     
    Mary Hamilton, Rosie26 and katvil like this.
  4. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    That could be part of it!
     
    Tina likes this.
  5. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I'm glad to hear that you were very organized before (although I'm sorry you lost that); it just means that even good planners (I was not) can get hit hard.
     
    lisaadele likes this.
  6. Lissa

    Lissa Well-Known Member

    I used to have phenomenal planning skills. Now it comes and goes for me. Mostly difficult, but sometimes I have days where everything just seems to come together properly.

    I often find myself unable to do things for days on end (like paying bills or going through piles on my desk) just because it's all too overwhelming. I know my brain can't even begin to handle it.

    Then randomly I'll wake up one day and the bandwidth is temporarily back --- complete with the mad planning skills. Of course I dive in to get stuff done and then wind up toasted! Sure feels good to have a brain for a little while...
     
  7. Seven

    Seven Well-Known Member

    I think if I don't plan I feel like no direction, like I am just going through live because I am not achieving what I want.
    I still plan but I do not put a due date. Like I say ok I will learn to play an instrument. I start classes and take my sweet time and do a little everyday towards my goal. The moving forward gives me happiness. I have to feel I grow.

    In the day to day I do goals like lets say I have to clean my closet. I do a bit when I can, if I cant I don't get upset or worked up about it. I always think of my live as if I am in a time capsule. It does not form part of my equation.

    When there is other people involve is trickier, I do not plan a lot of social events and if I do I plan like generic so I can adjust depending how I feel that day.
    like I say ok you can come for dinner, I will cook if I feel good if not I ordered out. I sleep most of the day before they get here but this is very rare I haven't entertain in a looong time, but I try at least once or twice a year. I have make it a thing to go and meet new places! I am creative on how to keep a social life while not getting dead tired in the process.

    If I am going to travel, I a week before start oral IV and make sure to be up to date with meds and might take mximum doses to be ok for event.
     
    Cort and lisaadele like this.
  8. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I think planning is actually very important because it does give direction and you get a boost when you accomplish something...that can be really helpful.
     
    Last edited: May 7, 2016
    Lissa likes this.
  9. CathK

    CathK Member

    I have a very hard time being realistic in my planning. Like, I'll have 2 activities planned for a week, and then something comes up that I *need* to do, so I schedule it the same week, thinking, oh sure, I can do this. Well..... not really. And this happens over, and over, and over. It's like I don't learn (sigh).
     
  10. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I'm with you....life gets in the way constantly!
     
    katvil likes this.
  11. Diana Maus

    Diana Maus Member

    It's been over for me for a long time. I can't remember anything. I have to make lists, multiple lists and then I have trouble comprehending the list order, what's more important. My memory is so bad that I can't remember a phone number long enough to dial it. I can't believe what I used to do at work! I was starting to slip by the time I retired early. I couldn't do what I was doing any more. This is the hard part for me. I was never athletic, but I valued my brain power. I have no brain power now. I just have to keep reminding myself of things and making these lists that I have to take with me if I go anywhere. I have to use the alarm on my phone if I have anything to do at a certain time or I will forget.

    My fibro aches and pains have grown worse, well, they are different. And I wonder if that why my memory is gone too. I wish they'd find help for cognitive issues. Just writing this feels like eating soup with a fork today. Some days I can write easier. Today, not so much.
     
    Lissa, Rosie26 and katvil like this.
  12. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    You know what it could be - I recently learned that the more the brain processes pain signals and the more attention it pays to pain, the less room there is for it do anything else - the less you are able to concentrate, to remember things, etc. - those resources used to feed those parts of the brain have been taken over by pain processing.

    The good news is that if this is a resource problem it might be able to be fixed.
     
    katvil likes this.
  13. h3ro

    h3ro Active Member

    Why plan ahead when I don't know how I will be feeling in a few hours let alone a few days or weeks?
     
    katvil and weyland like this.
  14. EILEEN

    EILEEN New Member

    I am surprised and sorry that you have this problem, Cort. I've always admired how much you seem to accomplish! But I recognized your situation the minute I started reading your words. Before I was a sick, my husband used to tease me that I had "the soul of a librarian" because I was so highly organized. Also, I was a litigator who managed deadlines happily, while raising my children. However, when I became suddenly ill with ME 25 years ago, all of that changed. My experience began to match your description exactly. It's not merely brain fog or hopelessness about being able to, e.g., keep an appointment, or even simple exhaustion, although those factors each play an important part. Rather, the biggest factor is being unable to prioritize (your graphic is exactly the way I feel most of the time) and then, even if I have managed to write a list of "to dos" the night before, my day goes by with that black hole feeling you describe so well and it's nighttime again with a dawning, sickening awareness that I have accomplished nothing. Even on my better days, I don't seem to prioritize properly and get the most urgent thing done. Helplessly watching my lists get longer, but somehow having so little ability to execute efficiently is probably the most dispiriting aspect of my illness. It's true that I only have a few good hours per week to accomplish anything, but it's equally true that my brain doesn't take hold of my life the way it used to. Some quite important things, e.g., signing up for free disabled transportation to my drs. appts., will remain on my list week after week for over a year.......and I have no concrete explanation for that! The one silver lining is that rarely I will have a couple of hours with my old brain.........so I know that I am still in there......and I'm hoping hard that all of us are still in there when the cure comes.
     
    Last edited: May 7, 2016
    Lissa and katvil like this.
  15. EILEEN

    EILEEN New Member

    This is a new idea to me, Cort. Do you remember (joke! joke! joke!) where you read about it? I'm very interested. Thanks!
     
    Last edited: May 7, 2016
  16. EILEEN

    EILEEN New Member

    One more thought on the inability to plan. I have from time to time hired an organizer to help me with projects that would otherwise overwhelm me (and definitely make me sicker.) She provides the executive function and the muscle and guides me through decisions, one at a time. It is pricey, but it is definitely a necessary health expense for me and I keep an eye on the outlay. Also, not every project requires a professional. A much less expensive, highly organized, trustworthy and congenial non-professional......even a teenager......could be enormously helpful. And I never forget to borrow the brains of friends and family! My health situation is complicated by some conditions in addition to ME, so I have a number of drs. Each thinks she is the most important and all are adamant about seeing me every three months, which is completely impossible for me. One of my drs., who understands my difficulty prioritizing, helps me choose whom to see next and whom to relegate to once a year. I couldn't get along even as poorly as I do without "borrowed brains."
    I have one more suggestion that has helped me a little. It's a bit counterintuitive. I decided to try just giving up prioritizing when I do not have the help described above. I got a mind-mapping app. called MindNode. There are lots of others, too. It's a visual way to free-associate.......very little effort required. These apps are typically very flexible and highly customizable. Lots of ways to use them. What I do is start with a very broad category, e.g., health or family or research, and throw every idea that occurs to me onto the screen. One can prioritize at any moment, by moving nodes, creating sub-nodes, etc., or not at all. I don't do much prioritizing. I just let the ideas marinate, sometimes for weeks. I start to see links that my brain is too tired to make on its own or that are just very unusual. I also start to see places where I'm duplicating my efforts or I see matters that I thought were necessary but, when looked at visually in the full context of my life, don't really matter much. I'm replacing brain function that I no longer have available to myself. After a while, a little organizing of the nodes and planning a bit are much easier for me. The old healthy me would have thought that blue-skying was great for creativity, but a silly way to go about organizing anything. But now, it does help me plan and, especially, be more efficient with my energy. I'm not suggesting it's a godsend or a good fit for all of us, but it does help me, it's beautiful and it's fun, too. The app I chose is very simple and immediately intuitive, but there are many other options, too, if you're interested.
     
    Sue Stevenson likes this.
  17. katvil

    katvil Member

    QUOTE="Cort, post: 18068, member: 2"]Some years ago I had a temporary breakthrough using transfer factor; it was like my brain was released. I immediately started planning for the future. I thought I would do "X" first, then I would do "Y" then in a couple of months I would do "Z". It was a completely natural process and as the treatment faded it all went dark again.

    I have a terrible time with planning or thinking ahead. I have a hard time even thinking of planning. I'm not talking about a week in advance, I'm talking about the day ahead of me. I think it's partly the idea of "ahead". I'm usually so overwhelmed by the here and now that I have trouble thinking of "ahead".

    This really struck me today because I knew I had a lot of things to do but I just couldn't think of them. It was like a black hole.

    When I make plans - phone calls, things to do, people to meet - I have to be real careful not to forget them. I forget dates to do things all the time.

    I do know of people with ME/CFS who do fine at planning ahead but not me. It's like that muscle was lost.

    This must have to do with problems with executive functioning....

    What are your experiences?[/QUOTE]
    I'm the same though worsening. I used to be able to plan a day ahead. Now, I am so exhausted, it takes me 3 days to store up or conserve energy to prepare to do one thing (go to a medical appointment, for example. If I need to go to the pharmacy on the same day, I cannot do it physically or mentally so it will not get done).

    As for the day, I used to have a "routine" of what I'd do after "bathing", which I barely do anymore due to energy conservation, and I have forgotten that. Thus, I often have no moisturizer or deodorant on or my hair combed or engage in other forms of "normal" hygiene like healthy people. I just forget and am too "dead" to do so.
     
    Rosie26 likes this.
  18. katvil

    katvil Member

    Me too.
     
    lisaadele likes this.
  19. Snow Leopard

    Snow Leopard Active Member

    My ability to plan is not the issue. The problem is my limited physical health and uncertainty.
     
    madie and weyland like this.
  20. Robert Christ

    Robert Christ Member

    I'm pretty good at making a list. But that's usually about as far as I get for all but the most important things. I don't hear this mentioned much but taking care of things that produce stress, like for me paying bills or doing a tax return. The feeling is extremely uncomfortable and makes focusing and concentrating almost impossible. Now if I help someone else with their tax return amazingly the stress component isn't there and I amazingly function almost like a normal person.

    So there does seem to be a gigantic stress component here.

    So if I react poorly to stress does that mean my problem is all in my head? I say no! The same thing probably could be said for an ex boxer or football player with traumatic brain injuries. And nobody would even think of suggesting that about them.

    I used to have a lot of apprehension about making appointments. Cause I never knew what the day it would fall upon would be like for me. Which is weird cause now I seem to be able to follow through with them because I do seem to know what to expect and can push myself when I need to. But I think my illness definitely has trended downward substantially over the last 20 years. So not sure how to explain why this is.

    I do have days where I can do light work but if I do the next one is almost guaranteed not to be good at all, maybe even an all dayer in bed and in pain with post exertional malaise. Some times I have had this so bad I couldn't sit up in bed without feeling extremely nauseous dizzy and week.

    If people think it's just fatigue ask them if they ever had the flu, or if they were so sea sick they couldn't get out of bed. Or they drank too much and when they lay down in there bed the room doesn't stop spinning. When it comes to how this limits you, or how debilitating it is, that's more like what ME/CFS is.
     
    Rosie26 likes this.
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