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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How do you explain to others more activity is bad?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Uk125250, Jul 12, 2016.

  1. Uk125250

    Uk125250

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    It is demoralizing to try to explain to someone that getting up and doing more is not helpful. It is incredibly detrimental and counterproductive for me. I was in very good shape before becoming ill. I have tried on many occasions to try to do more to appease everyone. Every single time it has corkscrewed me into the ground further. It's like telling someone to hit your thumb with a hammer. You do and it hurts. They tell you to do it again to make it feel better. You do, it hurts worse. You continue to do this, even though you know the outcome. I wouldn't be laying in bed if I didn't feel like my body was shutting down. You don't all of a sudden become lazy and unmotivated one day. People forget who you were before being sick quickly. What I feel doesn't seem logical to most, so therefore, must not be.
     
  2. ebethc

    ebethc Senior Member

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    @Uk125250
    Yes, ppl like to tell CFS sufferers that they are lazy and/or depressed, and the solution is exercise. I find that ppl either get it or they don't fairly quickly, so I try to explain it 2-3 times, and if they don't get it after that, I'm done.

    You can say that it's like having the flu... "If I came over to your house when you had the flu and told you that you needed to exercise or that you were actually depressed, then you would think that I'm nuts.. Well, that's what it's like for me when you say I need to exercise.." The flu analogy works for me b/c there's no cure for the flu, either.. It's just rest, liquids, vitamin c and zinc... Similarly, I go through crashes where - even though I do medical / pharma / supplement interventions - lots of rest is #1 on the list...

    This might be helpful for most ppl, but some will still not get it.. Also, it depends how sick you are, and which complications that you have... I have moderate CFS; it's a major hit to quality of life, career & finances, but I've never been in a wheelchair...
     
  3. Deltrus

    Deltrus Senior Member

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    Say it is like you have a constant hangover mixed with a light flu, but 24/7. This helps them relate.

    Mention that there has been recent metabolomics research that shows errors with energy metabolism, meaning that a person can actually run out of energy, and this can cause severe side effects because ATP is used in many body processes rather than just moving around.

    If a person with Alzheimer's has memory problems, it would be really stressful to get them to constantly try to memorize things. We know that the amyloid plaques physically interrupt memory. We know that they can't train their way to a better memory.

    Clearly a sick person CANNOT fight their symptoms head-on using common sense or brute force. Therapies have to align with what is actually physically going on.

    The body may seem simple but there are unintuitive physical mechanisms behind every process, thought and action that goes on in the human body. You cannot say exactly what it happening, but you can be confident in what you are able to do. You can be confident in what your body is telling you.
     
    Last edited: Jul 12, 2016
  4. Mary

    Mary Senior Member

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    @Uk125250 - I like what ebethc said, that people either get it or don't, fairly quickly, and there are some, no matter what you do or say, who won't get it, and for those I just don't waste my energy. I have had a few people tell me they thought it wasn't serious, maybe even not real, until they had been around me enough, actually seen me crashed and how my ability to function would fluctuate so wildly, and they finally began to "believe" it was real. It feels absurd, like we're asking someone to "believe" in the tooth fairy. However, when I talk to my kids on the phone, they can tell just from my voice (it gets weak when I'm crashed) how I'm doing.

    And I like what Deltrus said about recent metabolomics research showing errors with energy metabolism. That might be enough to make some people think twice.

    No, we definitely don't all of a sudden become lazy and unmotivated! :bang-head:
     
    Jennifer J, ebethc and Deltrus like this.
  5. Deltrus

    Deltrus Senior Member

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    Yeah just like Mary said. One time I went on a river tubing trip with my parents, I was fine and energetic the whole way, then afterwards I was so braindead and tired that I couldn't sit up on a chair or keep my head up straight. I looked like I had brain damage. Sometimes people only "get" it when they can see extreme visible physical symptoms.
     
  6. Effi

    Effi Senior Member

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    Excellent analogy, @Uk125250 ! Sometimes people get it when they have a bad flu themselves and can hardly make it to the bathroom. 'Wow, is that how you feel every day?' But after the flu is gone they totally forget how it felt and go back to not understanding. With some people I just give up explaining.
     
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  7. Deltrus

    Deltrus Senior Member

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    I feel like there's something comedic about post flu amnesia. Not only do they forget what the Flu feels like, they forget they forgot.

    I guess the sensations that a sick body can produce are utterly incomprehensible. If a Chinese person shouts at a person, they wont be able to remember or understand what they hear. Incomprehensible.

    Like, how can a person explain "It feels like oxidative stress is messing with 15 essential processes, my vision is turning grey and my brain can't process what I see very well, my emotions and desires are being manipulated". When the complicated background machinery breaks, a person can only vaguely say they are feeling like SHIT and things are going WRONG. The human body isn't designed to be able to sense and explain dysfunction using the upper levels of the mind.

    It is something profound that can be felt and understood but not explained.
     
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  8. Effi

    Effi Senior Member

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    @Deltrus I agree, they forget, and then they forget that they forgot - which is probably how it's supposed to be. It's only because we are stuck in this unbearable state for so long that we learn how to describe it. And we can't forget, cause it's always right there.
     
    Deltrus likes this.
  9. Uk125250

    Uk125250

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    Thanks for the replies. I have been telling Drs I think my Krebs cycle is messed up. It feels like what you would assume it would feel to not be making energy properly. I have trouble figuring out what specialists are experts on energy metabolism and mitochondrial dysfunction.
    People forget what you used to be like. I was in way better shape than anybody that tells me I need to get up and move around. I was in great aerobic and anaerobic condition by almost any standard. When something doesn't fit logically, people become incredulous.
     
    ebethc and Effi like this.
  10. Strawberry

    Strawberry Senior Member

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    @Uk125250 All the above suggestions are really good. I use the flu/hangover analogy all the time. I also use an analogy about completely overdoing it at the gym and getting rubber legs and weak and needing rest, but rest doesn't make it better like normal people. And if someone is stubborn still, I throw it back at them. "YOU remember how active I was before this hit. Do you REALLY think I no longer desire that life and enjoy sitting here doing little to nothing? Do you REALLY think I like being sick 24/7/360? You know me better than that, and I am still that person on the inside, craving to be active again. And if you can't believe I am sick, shame on you. I haven't changed, but apparently you have."

    I hope you don't have to resort to that one.... I haven't used it yet myself, but there are a few people that are borderline at getting it used on them. I have it prepared in my head just in case.
     
  11. TiredSam

    TiredSam The wise nematode hibernates

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    I tell people that doing a little more, building up slowly, pushing a bit etc is an excellent idea for most illnesses, and that it's of course what I tried for the first 6-9 months of my illness. Unfortunately it doesn't work for ME, as I repeatedly found to my cost, and as any other ME patient who has tried it has found to their cost too. It just makes us more ill.

    It took me 9 months to learn and accept that, so I suppose someone who doesn't suffer from ME can be excused for finding it hard to grasp and forgetting/overlooking/not quite getting that fact a few times. However, if they refuse to accept it and become annoying then I tend to simplify things by removing them from my life. No time for that shit, I've got an illness to manage.
     
  12. wastwater

    wastwater Senior Member

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    People find PEM very hard to believe or accept suppose you have to go there to know there.
     
  13. slysaint

    slysaint Senior Member

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    This is where I and I imagine a lot of people go wrong. When my doctor said to 'take it easy', my interpretation at the time was based on what I was used to doing; ie getting up at 6.30,travelling for at least an hour to get to work, working 8 hours as an analyst/programmer an hour to get home again, for 5 days a week sometimes also going out in the evening. Then at the week end doing all the housework, washing ironing, shopping etc plus anything else I had to do. I even worked the odd evening at my sisters restaurant. Doing everything at full speed.

    So MY idea of taking it easy (particularly as I'd already been off sick from work for several weeks with pneumonia) was still way too much. Then the weeks turned to months and everytime I felt a bit better I'd be doing as much as I could but way more than I should've. I was virtually housebound for 5 years. After a lot of initial sympathy, people('friends'and family) dissappeared. Only a few(I can count them on one hand) stuck by me.

    But over the last 10 years I have managed to increase what I can do. Management being the key. I'm not saying I haven't crashed because I have, big time, many times. The thing is the timing. Most illnesses people expect to recover in days, weeks maybe months. So the idea of building up slowly is based on that perception. But what I have found with ME is that you cannot set any where near such a strict timetable and any 'targets' are more like wish lists. You learn when and what you can do, and for how long; how long you need to rest in between and most importantly, when to stop. The latter is the hardest because sometimes the adrenalin kicks in and you think you can keep going (sometimes I do and pay the price). So the increments in activity are bearly notable.

    I'm not saying I'm on the road to recovery because I don't think I will now. My main goal is not to get worse.
     
    Jennifer J, Keela Too, Mel9 and 6 others like this.
  14. Uk125250

    Uk125250

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    I'm getting really frustrated with everyone telling me to do GET. I've told family and Drs it is very bad for me. They just do not believe me. They think you don't want to felt better or are just afraid if getting "tired". I was in great shape before all this. I don't understand why they won't believe me.
     
    Jennifer J, *GG* and ebethc like this.
  15. Keela Too

    Keela Too Sally Burch

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    The ME Association survey is VERY useful for countering this.

    First the graphs. There is one nice one that shows 74% of people who tried GET said it made their symptoms worse. Also check out the patient comments near the end of this very long document:
    http://www.meassociation.org.uk/wp-...No-decisions-about-me-without-me-30.05.15.pdf

    They have a summary here http://www.meassociation.org.uk/2015/05/23959/ - but the best comments are in the document itself.

    I also did a blog post / slide share on the topic of "Graded Exercise: No Thank You!" which you might find useful:
    http://sallyjustme.blogspot.co.uk/2015/09/graded-exercise-therapy-no-thank-you.html
     
    Jennifer J, mango, Hutan and 3 others like this.
  16. PennyIA

    PennyIA Senior Member

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    I've been slowly trying to educate my fiancé on the 'situation' when he hasn't seen me go through a bad crash yet. Given that there is a LOT we don't really know scientifically... and I technically don't have a diagnosis (regardless of the fact that I meet all criteria for ME, CFS, whatever name you want to apply, I haven't found a set of criteria that doesn't match).

    I've tried to discussing things a little bit here and a little bit there. He absorbs better that way... and I try to give concrete examples.

    I've explained how some people can over-exert themselves and take it easy for a day, MAYBE two and that they recover. This he can easily relate to - then... I've explained how it almost feels like I have the flue which can start within a day of over-exerting myself - but instead of a day or two of feeling run down and horrid, I can be like that for weeks or months.

    Later I took some time to explain anaerobic vs aerobic exercise and how long-distance runners can find themselves in anaerobic space - they push through it and get lactic acid build up, etc. This he can easily relate to - then... I've explained how *some* studies have shown some links that show simply standing up and walking to the bathroom for people with this condition can push them into anaerobic exercise threshold - that somehow the aerobic energy isn't an option for us... and how sometimes, I can spend the entire bed trying to relax and still feel like I've ran a marathon that day.

    Another time, I discussed the 2-day exercise test and how people with other conditions, including depression, do at least as well as they did on day 1, if not better... and how people with our condition have shown in *some* studies that we really do not do better, we degrade over time.

    Then at a different time, I bring up how *some* studies show we have a build up of lactic acid after exercise...

    Then at a different time, I bring up the promising leads for studies related to mitochondria dysfunction and that I was looking up what they do... and apparently part of their job is to transport oxygen to the muscles which *seems* to fit into the picture that aerobic energy production seems to not be working properly ... and that if we have an issue pushing oxygen to our muscles, then exertion would mean that we have to use anaerobic energy - which is what causes us longer-term health issues.

    I've got some future topics for him, like when I feel 'flu-like' which is PEM - what it truly feels like... we'll get there.
     

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