Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Updates to Ten minutes of walking today

Discussion in 'General ME/CFS Discussion' started by Still alive and kicking, Mar 9, 2017.

  1. Still alive and kicking

    Still alive and kicking

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    I'm still new here, so I'm thinking of charting my progress good and bad. Should I use a blog post? Or is there a calendar I can add notes to like "today I did x amount of activity"? I'm not sure where I'm going with that idea, except that documentation is often important.

    So for today.... I felt OK when I woke up, but fuzzy for 20 minutes. I walked for 10 minutes on my treadmill while I still felt ok. I've spent about 2 hours talking with a health advocate and then watching a video. I managed to take my full complement of supplements today (sometimes I limit it to meds because i have trouble swallowing), and I'm using biotin sublingually today in small doses (this helps me think straight).

    I can just report that here, but I think it would be too much noise :) Or I can just update this thread maybe. I changed the title to "Updates to..." so if the thread is the solution I can just use it.

    I've only had a few weeks to absorb that i probably have ME/CFS (there's no actual diagnosis or medical code is there?) so I'm trying to decide how to deal with this.
     
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  2. Diwi9

    Diwi9 Senior Member

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    I need to keep documentation too. I started using Microsoft OneNote...but am not very disciplined about it and should be!
     
  3. Horizon

    Horizon Senior Member

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    Are you doing some sort of graded exercise program? Be careful not to induce PEM or worsen your symptoms. I am interested in learning ways to help myself not get fully deconditioned without inducing PEM.
     
  4. Dechi

    Dechi Senior Member

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    You can buy a smart watch to record your exercise, it's very efficient. As for symptoms, since there is no one single app that can get everything together, I have found that writing a journal is the best way to go. So I have been doing it for almost 2 years now on my ipad. My watch also records my sleep and number of steps, so I have a good picture.

    I also record my heart rate variability, but that's another story. And my calory intake, because doing very little is causing weight gain and I try to control that.
     
  5. Still alive and kicking

    Still alive and kicking

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    Thank you for the responses! I hope I can always do just a bit of exercise a few times a week, I think I'd go nuts if I couldn't. But I'm battening down the hatches and ordered my favorite thing in the world: math books!! Gasp! I know, I'm weird. But it's surprisingly satisfying to prove things and it will be a good way to chart any loss of mental ability. And I can plot my revenge on the sci community... I decided to order statistics of experimental analysis... hehehehehehehe!

    I love the idea of a smart watch, it's so sci fi! :cool:

    What is PEM? When I googled it I got a bunch of stuff about malnutrition. I know about the Push-crash thing if that's what you meant, though. :thumbsup:
     
    Last edited: Mar 10, 2017
  6. Murph

    Murph :)

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    I use a spreadsheet and update the group when I notice something is working. But a thread full of updates could be interesting to watch develop in real time!
     
  7. Dechi

    Dechi Senior Member

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    @Still alive and kicking PEM is post exertional malaise, or what happens after you push yourself too much.
     
  8. Still alive and kicking

    Still alive and kicking

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    Gotcha. I used to push myself to walk a mile a day. But it was counterproductive. Actually the best exercises I find for myself are either yoga or weight lifting. The treadmill is for when I notice I am feeling ok and don't want to miss the window. I'll take any excuse to have a bit of movement. I used to love biking and hiking and just about anything physical. Not hiking for long weekends in the summer is going to be awful. :(
     
  9. hellytheelephant

    hellytheelephant Senior Member

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    You say you probably have ME/CFS Have you actually had a diagnosis?

    There are a list of symptoms/conditions and some of the symptoms do cross over with many other illnesses that might require different treatment or management, so best not to self diagnose.

    If you go to the Home page of Phoenix Rising in the bar across the top-select ABOUT ME/CFS then I'm Fatigued- is it ME/CFS? Here you will find comprehensive criteria for diagnosis- but you still need to get checked out by a DR.
     
  10. slysaint

    slysaint Senior Member

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    If you have ME and are in the early stages this (however tempting) could be a bad strategy.
    As @hellytheelephant said you should try and get a diagnosis, and then you really need to read up a bit more about exercising, pacing, and PEM.
     
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  11. hellytheelephant

    hellytheelephant Senior Member

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    Not to scare you, but not hiking in the Summer, is the least of the worries of many of us on here who are bedbound or housebound. If we had rested wisely enough in the early stages then we may be considerably less affected or even well.
    As @slysaint says, if you do have it, then the best thing you can do is inform yourself about how to self manage and how to notice when your body is overtaxed. Respect how serious this illness is.

    This is not easy to learn, as it is counter-intuitive if you have been quite active previously, but could really pay off in the long term.
     
    TrixieStix, Binkie4, Mary and 7 others like this.
  12. Invisible Woman

    Invisible Woman Senior Member

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    I'm with @hellytheelephant and @slysaint on this.

    You really do need a diagnosis and to be aware of all the pros and cons before you embark on anything. We are conditioned to believe that doing something is the best option and I've had to learn the hard way that sometimes stopping and just resting (literally doing nothing) is what I need and it takes 10,000 times more willpower.

    I am about 20 years in. I was very active and had a very demanding career that I loved. Even though I was very ill in the beginning I couldn't conceive just how ill I could become. I wish that I had understood the full consequences of overdoing it in the early days. I tried to be proactive and I now understand that I over-managed myself and kept myself too close to the edge in terms of energy expenditure. I believe that this is one of the main reasons why I am so severely affected today.

    What you are doing may very well be right for you - but make sure your diagnosis is correct and that all other things that should be ruled out have been.

    Whatever you decide to do I wish you success and recovery.
     
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  13. Still alive and kicking

    Still alive and kicking

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    I was afraid of this. I mean, I was afraid that if I mentioned exercise...No matter how much I say I enjoy it and would bug out without it, you will continue to badger me because the UK decided to foist "Graded exercise therapy" on some of us, and are being particularly evil.
     
    Last edited by a moderator: Mar 10, 2017
  14. Diwi9

    Diwi9 Senior Member

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    @Still alive and kicking - If you can still exercise, that is great. You mentioned that you have not experienced PEM. If you reach that level at some point, you will understand that the advice. We are just human beings who have suffered for years...many completely unaided and house-bound/bed-bound. You may take a look at this video if you wish to better understand the depth of this illness:
     
    Last edited by a moderator: Mar 10, 2017
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  15. slysaint

    slysaint Senior Member

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    You are wrong there.
    Before I joined PR I had been out of the loop for many years and so had been completely unaware of the whole GET thing. My doctor (who diagnosed me) was very sympathetic but did not really offer anything other than to tell me to take it easy. But I had always been very active and so repeatedly 'pushed through', as I struggled to walk anywhere(very hilly where I lived then), I would make myself walk up and down the stairs, I even borrowed a neighbours exercise bike.
    No one told me to do any of it; I thought it would make me better.
    But it didn't. I got worse.
    This is where good information on pacing would have helped. I've only learnt about it the hard way.
    So now I can do some physical things that I enjoy, but nothing like as much as I would like.
    We're not saying all exercise is bad and don't do anything, but as you are early on in the illness this is when you could be causing the most harm without necessarily realising it.
     
  16. Valentijn

    Valentijn Senior Member

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    PEM is a defining symptom of ME, and the good criteria make it mandatory. If you don't have PEM, your doctor needs to keep looking for the cause of your symptoms.
     
  17. Sandman00747

    Sandman00747 Senior Member

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    I am weird too @Still alive and kicking . I like to solve calculus problems and take IQ tests to make sure my mental faculties are still relatively in tact. Actually this illness over the years has tested me far more physically than mentally. I don't know which is worse to have impaired?
     
  18. CCC

    CCC Senior Member

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    Unless you have only the M, all the time. Or you have it but don't realise.

    We went for years having PEM, but not knowing it. We thought it was just being a bit tired after activity (sometimes a day or two later) or catching something that was going around (sometimes lasting for a few weeks), not realising at all what was going on until the real crash came.
     
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  19. BruceInOz

    BruceInOz Senior Member

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    Which is worse, physical or cognitive, undoubtedly varies from person to person depending on which is more important to their sense of identity. If I only had physical impairment but could still function cognitively, maybe this illness wouldn't have ended my career in theoretical physics.
     
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