The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Poll: What can you do on a regular basis?

Discussion in 'General ME/CFS Discussion' started by Jesse2233, Dec 16, 2017.

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What can you do on a regular basis?

  1. Get out of bed

    62 vote(s)
    93.9%
  2. Tolerate normal light and sound

    47 vote(s)
    71.2%
  3. Watch movies / television shows

    53 vote(s)
    80.3%
  4. Read short articles (<200 words in a sitting)

    60 vote(s)
    90.9%
  5. Read long articles / books (>200 words in a sitting)

    35 vote(s)
    53.0%
  6. Walk around the house

    58 vote(s)
    87.9%
  7. Stand in the shower (5-20 min)

    39 vote(s)
    59.1%
  8. Drive a car short distances (<20 min)

    28 vote(s)
    42.4%
  9. Drive a car long distances (>20 min)

    15 vote(s)
    22.7%
  10. Prepare meals (3-4 a day)

    36 vote(s)
    54.5%
  11. Shop for groceries at a supermarket (Including carrying of bags / transportation)

    24 vote(s)
    36.4%
  12. Walk up steps (at least a half flight)

    42 vote(s)
    63.6%
  13. Socialize for short periods of time (<20 min)

    41 vote(s)
    62.1%
  14. Socialize for long periods of time (>20 min)

    16 vote(s)
    24.2%
  15. Perform mathematical calculations (on paper or in your head)

    31 vote(s)
    47.0%
  16. Anaerobic exercise (e.g. lifting weights)

    13 vote(s)
    19.7%
  17. Stretching exercise (e.g. yoga / pilates)

    20 vote(s)
    30.3%
  18. Aerobic / cardiovascular exercise (e.g. jogging / swimming)

    3 vote(s)
    4.5%
  19. Work part time (<40 hours a week)

    12 vote(s)
    18.2%
  20. Work full time (>40 hours a week)

    2 vote(s)
    3.0%
Multiple votes are allowed.
  1. Jesse2233

    Jesse2233 Senior Member

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    I thought it would be interesting to see a more qualitative measure of the differing levels of severity represented here.

    By regular basis I mean do consistently without significantly worsening your condition

    Answer below and provide any qualifying details in comments
     
    Joh, BadBadBear, JD_Lucas and 4 others like this.
  2. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Not driving is not about the effort. Its about safety. I can drive, but I can also crash. Its much better if I do not.

    I also cannot shower right now, but its not an ME thing, or at least mostly its not. I have some leg ulcers as a complication of meds, physical problems, and probably OI and ME. I need to keep them dry. So sometimes something might or might not be possible due to non-ME things.

    My capacity for math is absurdly poor. I used to tutor university level math. I even taught a class once. Now I struggle to do simple arithmetic, and can only do it for seconds. I suspect this is dyscalculia.

    Something else that might be good on the list is about executing plans. I can plan the heck out of things, then when I have to do them ... how can I even do step one? I rarely get to step two.

    I can usually walk up a half flight of steps, but in deep PEM I cannot handle even a single step.

    For clarity I am mostly housebound, I consider myself at the severe end of moderate.
     
  3. Jesse2233

    Jesse2233 Senior Member

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    Thanks @alex3619 excellent points as usual

    I should note that I'm not able to change the poll questions now that some have been answered but people are welcome to comment with additional restrictions / qualifiers / abilities below.
     
    Joh, AnnaDove and alex3619 like this.
  4. JeanneD

    JeanneD Senior Member

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    I voted somewhat optimistically. I can walk up a single flight of stairs most of the time if I take it slow and only do it once a day or so. I can lift weights -- light ones for a few minutes at a time. I can work part-time, self-employed on my own schedule <10 hrs a week.

    Still, better than bedbound, and unable to read or watch TV like I was years ago. So I'm celebrating every little thing I can do, even if it's just a very few reps of light weights. :)
     
  5. Diwi9

    Diwi9 Senior Member

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    USA
    Great poll @Jesse2233.

    Socializing for long or short periods is less of an issue than the number of people. I can handle conversations with one person, especially if they come to my house. But when there are multiple people and any sort of cross talk, I'm lost. I also get lost if I'm talking to one person and they start going into too much narrative. These experiences can be a trigger for me.

    I'm with @alex3619 with driving. I'm able to do it sometimes, but only try to do so on good days and short trips. I found that when I stack outing tasks, my drive home is quite scary with loss of concentration and spatial problems. I cannot night drive because lights really destroy my vision. What a mess!
     
    mattie, JeanneD and Jesse2233 like this.
  6. Learner1

    Learner1 Forum Support Assistant

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    Pacific Northwest
    I like @alex3619 's executing plans.

    Making a plan can be overwhelming, and executing one is yet another challenge.
     
    Jesse2233 likes this.
  7. Murph

    Murph :)

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    AS it stands going to the supermarket is as difficult as lifting weights!

    This really resonates with me. I'm really very mild and can achieve plenty in the average week but going to the supermarket turns me in to a quivering wreck!


    edit to show example shopping trip:

    2 minutes: get shoes, car keys, green bags.
    10 minutes, drive, park, walk into shops.
    20 minutes: walk up and down aisles, read list, compare, choose, hunt for the one thing you can't find.
    5 minutes: check out
    10 minutes: go to car, put groceries in, put trolley away, drive home
    12 minutes, unpack groceries from car to shelves.

    That's 59 minutes of complex physical and mental activity with no real chance to rest. I think that's why it's so exhausting. Maybe some people can do some parts more quickly but I find it takes even longer. I get groceries delivered 90% of the time now.
     
    Last edited: Dec 17, 2017
  8. Mel9

    Mel9 Senior Member

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    NSW Australia
    Me too!
     
    Mary, Murph and Jesse2233 like this.
  9. *GG*

    *GG* senior member

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    Concord, NH
    All of it, except for the work thing.

    GG
     
  10. Jesse2233

    Jesse2233 Senior Member

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    Southern California
    Cardio?
     
  11. *GG*

    *GG* senior member

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    Concord, NH
    Sure thing, I do things with one guy 20 years younger than me, and he cannot keep up with me Mtn biking. Been doing cardio all my life, I don't feel the Runners high like when I was healthy, actually end up feeling worse. But no major crash in years!

    GG
     
    Timaca, ChrisD and Jesse2233 like this.
  12. Jesse2233

    Jesse2233 Senior Member

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    Southern California
    that's great! what are your current major symptoms?
     
    Timaca likes this.
  13. *GG*

    *GG* senior member

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    Concord, NH
    Pain, fatigue, headaches, sleep (initiation/continuance) issues, OSA and brain fog (cognitive dysfunction).

    I was in the study attached below, wonder how I might skew the results?!

    GG

    PS Good night, almost 2 am here on the East Coast :) Sleep meds are kicking in.
     

    Attached Files:

    Jesse2233 likes this.
  14. Gingergrrl

    Gingergrrl Senior Member

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    USA
    This is a very good point and I think many of the responses will also depend on if someone has POTS or not. I can do a million times more now than I could in 2015 but I don't believe I will ever reach the point of taking a shower without using a shower chair b/c it would not be safe with POTS (even if I could do it in theory). Vs. reading a book, watching TV, socializing with friends have never been impacted by my illness. I know it's too late to add but I'm also wondering how many people are affected on a regular basis by allergic reactions?

    And I am sorry to hear about your leg ulcers @alex3619 and hoping they improve soon.
     
    Mel9 and Jesse2233 like this.
  15. Dabam

    Dabam

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    A lot of the things I can't do on the list are more down to the anxiety and panic attacks than actual CFS like shopping,working, socialising etc.Although I am working to rectify this.

    Recently began a small weight training routine with pitiful weights in my home gym but I don't think I will be competing in the Olympia anytime soon.

    As for cardio I couldn't do it when I was well so no chance now!!
     
    Mel9 and Jesse2233 like this.
  16. Timaca

    Timaca Senior Member

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    I was very fit and did many athletic things (strenuous hikes and backpacking trips) prior to getting CFS 14 years ago.

    I can do everything on the list now except for strenuous aerobics and working full time (on my good days, which are most of the time). I can do mild aerobics (short hikes that aren't too difficult and walking downhill --and thus uphill--in my neighborhood.) This is the first year I've been able to add those activities on a regular basis.

    I have improved a great deal since getting ill. For sure, pathogens are part of my CFS problem. And those seem to have set off multiple food intolerance issues in me. I continue to take Valtrex and avoid the foods that are problematic for me....and hope I can continue to figure out things that will help me improve more.

    Wishing everyone a more healthy 2018.
     
  17. TenuousGrip

    TenuousGrip Senior Member

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    Forgive the voice of paranoia but ....

    Those of you who are either collecting or applying for any sort of disability benefits should be very careful when posting information on a thread like this (all due respect to Jesse2233 for an excellent question and poll).

    I don't think this was posted in a members-only forum. You never know who's watching.

    Just ... be careful.
     
  18. Ravn

    Ravn Senior Member

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    Good point. Answers would definitely vary depending on PEM status.

    Another issue the poll doesn't capture is the 'OR' factor. For example, on a good day I can make my own meals or I can briefly socialise or I can read a longer article - but not all on the same day.

    But this is not a criticism @Jesse2233 , just a reflection. It would be impossible to capture such nuances in a simple poll.
     
    BadBadBear, Mel9, Jesse2233 and 2 others like this.
  19. Mary

    Mary Forum Support Assistant

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    Southern California
    @Jesse2233 - I can do many of those things, but not all on the same day. e.g., I can take a shower, but not if I'm going grocery shopping. Grocery shopping leaves no energy for anything else and sometimes (but not always) causes me to crash. So I'm not sure how to answer your poll. I could answer yes to many of the items, but I'm afraid it will look I can do more than I actually can.

    And of course if I have PEM, I can't do any of them.
     
  20. Jesse2233

    Jesse2233 Senior Member

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    Answers are anonymous in the poll meaning I can’t see who answered what. But of course it’s possible someone with access to the backend could see, so if you don’t feel comfortable don’t answer
     
    Gingergrrl likes this.

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