Looking Ahead to Change: Little by Little
I don't make New Year's Resolutions. I don't think I ever really did, but the last decade or two would have been enough to stifle that impulse. I've just been too aware that I don't have that much control over what happens in my life.
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Are there skills from your education or career that have helped you as an ME/CFS patient?

Discussion in 'General ME/CFS Discussion' started by Jesse2233, May 1, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    I'm curious to learn more about how people's experience in their home life, education, or career helped them navigate the unique set of challenges presented by this disease.

    I imagine there's quite a range.

    For myself, I'd say being an entrepreneur taught me how to quickly assimilate information, plan strategically, and stay open to less conventional solutions. Of course this background did little to prepare me in terms of medical, scientific, or nutritional knowledge
     
    Last edited: May 1, 2017
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  2. Alvin2

    Alvin2 Senior Member

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    Interesting question
    My ability to research, understand and strategically plan plus my medical knowledge has helped a great deal, but losing ones mental faculties is a very scary thing to have happen. I hope a treatment is found soon because i'm physically and mentally in bad shape, from memory to logic things are looking bad.
     
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  3. Jesse2233

    Jesse2233 Senior Member

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    What was your career?
     
  4. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Interesting question.X2

    I`m a law student, but I`m not too sure it has played any defining role in itself. Maybe I was able to find the relevant information faster than some, but that also has it`s backside, cause u realize there`s not too many avenues to explore at any given time. Unless you`re willing to try almost everything, which I`m not.

    My personal experience, when I`m not overexerting, is that the burden is mainly mental. I can live with these symptoms, but it is the groundhog day scenario that makes it hard. The isolation, the nostalgia and the experience of time flying by. All you wished you could do, but you cant. All u can do, but it does not feel good. Constantly aware of the disease. You gotta be pretty friggin stubborn with this disease. I would say that is my best weapon, that, and the deep wish for justice for our patient group. Those traits are just part of my personality, and was why i chose to study law in the first place. In periods where i lose motivation, those bring my focus back again. That, and my love for music, culture and life in general.

    Sorry if I drifted a bit here
     
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  5. Alvin2

    Alvin2 Senior Member

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    Never got that far, had this all my life (though nowhere as bad till recent years). Everyone thought i would end up as a scientist or medical researcher, its not easy to talk about
     
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  6. Jesse2233

    Jesse2233 Senior Member

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    I can relate to a lot of that, interesting perspective
     
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  7. Jesse2233

    Jesse2233 Senior Member

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    Sorry to hear that man
     
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  8. Groggy Doggy

    Groggy Doggy Who let the dogs out?!! Woof! Woof!

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    Persistence. Don't follow the herd. Think "out of the box". Listen to your "gut" and trust your intuition. Ignore negative people who try to discourage you. Research, research, research... be an informed risk taker. Celebrate each victory!!
     
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  9. Matthew Jones

    Matthew Jones Senior Member

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    I was 21 and at Uni when I got ill so never had a career and consider my education to have been a big waste, unless I recover and get to put it to good use.

    I suppose basic education in terms of learning how to distinguish good science from quackery has helped me understand how doomed we are (sorry that's just how I feel about the current state of research) and to not waste money on unproven treatments. I can't just naively believe that CBT and GET will work as I know more or less how to filter quality studies from crap ones. And sadly the conclusion is that we have a long way to go find a cure. Unless Rituximab works! That's my one hope. I'm pinning everything on it.

    Ok I can be a bit more positive than that. One of the things that helps me keep going is my 'vision' you could say for the future of humanity. I believe we can one day reach a transhumanist utopia, where all diseases, ageing and war have ended. I want to contribute to that future and I suppose my education has a part to play in my understanding of human potential. So I remain inspired about humanity partially as a result of my education.
     
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  10. JaimeS

    JaimeS Senior Member

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    With almost surgical precision. ;)

    My mom had CFS in the 1990s, and I could see that allopathy could do nothing for her. That's how I ended up in the only MS program in the US for alternative medicine. For all their woo (and yes... there was intense woo) there were enough hard-science minds teaching there that I learned how to dissect and judge scientific articles, and it was there that I learned my first real laboratory skills. Also how the shape of chemicals relates to their function in the body. 10+ years teaching science made me more confident in the basics.

    But I think that would've all been a load of poo if it hadn't been for a sea-change in my behavior. At first, I was thinking that I ought to simply wait to see what a physician would say. I refused to take anything, even OTC, because I was worried it would shift my symptoms in a way that made me tougher to diagnose. I don't remember what the tripping point was, exactly, but there was a :ill::confused:o_O:(:mad: moment, followed by lots of :nerd:. I tested meds empirically, going off and on them multiple times to ensure to the best of my ability that they were actually doing what I thought they were. Since different stages of the disease are different, I occasionally repeated the process and was able to eliminate something that used to help out, but no longer did. I kept meticulous symptom diaries. Made some dramatic changes in diet and kept diarying on.

    [​IMG]

    I'm not cured, but me at onset versus me now is no comparison. I'm working full-time in person in a lab. I work from home some days when all I have to do is write, to husband my energy -- but beyond that, I'm almost living the life of a well person.

    I don't know where I would be if I didn't have science background. It would not have been pretty.

    As I always say when I talk about how much I'm improved, know that I'm aware that there are those of you out there who have done everything "right" and still aren't any better. I'm sorry -- I don't know what separates us. I wish I did.

    -J
     
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  11. Alvin2

    Alvin2 Senior Member

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    What treatments did you find helpful?
     
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  12. JaimeS

    JaimeS Senior Member

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  13. Alvin2

    Alvin2 Senior Member

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    Very interesting, i have tried some of the things your taking to little effect, though a few i would be interested in trying if i have the money someday.
    I find the Quercetin mentions interesting, i know a great deal about it, though its bioavailability is low, though there is a high bioavailability version available
     
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  14. JaimeS

    JaimeS Senior Member

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    If and only if! You can end up spending a lot trying things out. With how busy I've been lately, I've forgotten to order new supplements in time once or twice. The results are disastrous and often shockingly swift. So I'm not "better" I've just found which fingers to stick in the dam.
     
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  15. Alvin2

    Alvin2 Senior Member

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    I've tried many in my time, though your correct things do change which is frustrating.
    I have a few to replenish and a few more to try on tap, hopefully someday is someday soon, if something is going to work it will be a big improvement that i really need
     
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  16. Basilico

    Basilico Florida

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    I was a special ed (math) teacher. The math part has helped me to approach new supplements/protocols in a systematic way that tries to reduce the number of variables I'm working with.

    The special ed part helps in coming up with modifications/adaptations and thinking in terms of goals/objectives (a major aspect of special ed)...so if I'm struggling to reach a goal, I'm very good at breaking down the objectives necessary to reach that goal and tackle those objectives step by step. I find that by focusing on the individual steps necessary to reach an overarching goal, I can prevent myself from getting too overwhelmed and giving up.

    Also, as a classroom teacher, I have a lot of experience anticipating likely problems to prevent them from happening (basic classroom management). I've found this to be a useful skill in my personal life now with chronic illness; for example, I recently went on a short (but ambitious) roadtrip with my husband for his birthday. We spent A LOT of time preparing for all the things that could possibly go wrong and came up with ways to both prevent problems and fall-back plans if the problems happened anyway. As a teacher, you always need a fallback plan, especially if you are depending on any kind of technology for the lesson. We shocked ourselves with how well the trip went...it reminded us that we may need to overplan, but we are still capable of doing things that we really want to, even with chronic illness.
     
    Last edited: May 3, 2017
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  17. MikeJackmin

    MikeJackmin Senior Member

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    I used to be a computer programmer, and there was a common joke in our world that the best programmers were fundamentally lazy people; give them a difficult task, and rather then just go ahead and do it, they would sit back and find an easier way. Solving problems in the unexpected easy way is a good habit to have in that line of work.
     
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  18. Crux

    Crux Senior Member

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    Having an art background , I tend to be an experimental risk taker, though less so now. This has helped me to trial drugs and supplements that might have negative side effects.

    Critiques could be brutal, even personal, so I developed a thicker skin, to an extent. People can be cruel to the ill.

    I have learned from this disease, though, that conservation of energy is a critical part of my routine. Less waste.
    Since memory is weaker, I test it in small ways.
     
  19. belize44

    belize44 Senior Member

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    Before becoming ill, I was an Occupational Therapist. This enables me to be well versed in energy conservation, keeping myself sane with finding things to occupy my mind and time, and also how to adapt things in my environment to my limitations. I sometimes amaze myself when I can still come up with creative solutions to making meal prep, showering and housework easier!
     
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  20. Alvin2

    Alvin2 Senior Member

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    Can you share these with us, especially food i am having big problems
     
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