1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
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Do you work / have career?

Discussion in 'General ME/CFS Discussion' started by RedLineBoy, Jul 26, 2013.

  1. RedLineBoy

    RedLineBoy

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    I agree about pushing your self too much will cause relapse. But, you have to do something in life to achieve greater good. How can we go on with our lives this way?
  2. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    No work, no career. :D

    My "CFS" started when I was 18 (although there was a background of cognitive/neurological/coordination problems already) and I tried several careers (three to be exact) until now that I am 22. As some people have pointed out I declined in this time and every year the symptoms were worse, but the one that really blocked any possibility of pursuing normal studies was social phobia. It wasnt until recently that I started noticing how much empathy I feel with people here, which slowly convinced me of having something very similar to them.

    The other thing that really blocked studies for me was the systematic "un-interestingness" or intellectual and the spiritual abulia effect that University Degrees have on me. That and sleeping like shit.

    So at this point I 100% focused in healing myself. I let in the past my parents push me into crashing, going to school with a couple hours of sleep to be extremely stressed out for hours. I have some solid resentment towards them and everyone else for telling me for years it was all in my head and that I needed to go on with normal life. These years with way more energy/motivation/focus/well being were crucial and starting right away with resting and researching a cure would have made a big difference, or even I would be cured right now already.

    My plan is getting better, then start doing something while I get even better until I eventually heal. I want to write books, for example and research health/science and cure people and design a better quality of life. But there will be nothing in the horizon if I dont get at least 25% better than what I am right now.

    I think everyone should focus on healing and only in healing. If for healing you need money, look for a way to get it that doesnt push you into being worse. In the longterm is the best.
  3. taniaaust1

    taniaaust1 Senior Member

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    But if it causes a relapse, one can end up doing far less then if one hadnt pushed in the first place. By not crashing, one actually ends up being able to get more done not less.

    eg the other day I pushed myself too much, so crashed and ended up in bed for two days. So it caused 2 days where I couldnt do a thing. Even if a person doesnt end up in bed, they are far less efficient at things when they are crashing.
    peggy-sue and Valentijn like this.
  4. RedLineBoy

    RedLineBoy

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    In an ideal situation I would agree not to push yourself hard enough so that it will cause relapse. However, observation through myself I concluded that if your financially okay then take it easy, if not then you have to work or at least have a career to support your family.

    What "beyond" explains is what I would do if I had someone to take care of me. My family looks up to me to provide support and comfort they require. How can I explain that walking, talking, laughing individual is indeed sick enough not work. I push my self everyday thinking I could do better, but at the end I just can't push enough with all the fatigue and cognitive disorder.

    If I was given a choice to cure fatigue or cognitive I would choose cognitive. If you are mentally stable enough then you can push through your fatigue.

    Like I said previously, everyone's level of fatigue is different. I just hope one day scientist are able to find a cure for this horrific disease.
  5. Valentijn

    Valentijn Activity Level: 3

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    No, you can't. Your experience of PEM and other physical ME problems seems to be minimal or non-existent, hence you really don't have a basis to be generalizing about how much better it is than cognitive dysfunction for everyone.

    My cognitive dysfunction was largely due to orthostatic intolerance. I can think pretty clearly now that it's treated, and it makes no difference at all regarding physical symptoms.

    I also think "mentally stable" is an extremely poor choice of words.
  6. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    It would be interesting to hear what you had to say after you had been sick 22 years, although I hope it doesn't come to that. You are fortunate to have been diagnosed so early. It greatly increases your chance of recovery.
    Keep in mind that your experience is atypical for this board.
  7. Thomas

    Thomas

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    Thanks Little Bluestem. I am not certain why an early diagnosis increases my chances of recovery? Treatment thus far has been less than effective and had I done nothing treatment wise I am not sure I would be worse off at this point, but I appreciate your response nonetheless
  8. roxie60

    roxie60 Senior Member

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    Guess I find out tomorrow if I still have a career and a job :(
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    There seems to be a domino effect of escalating damage over time. If you can get the right treatment early, there is less to treat. But yes, it has to be the right treatment.

    Sushi
    Thomas, Little Bluestem and roxie60 like this.
  10. RedLineBoy

    RedLineBoy

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    What do you mean?
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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  12. taniaaust1

    taniaaust1 Senior Member

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    Early diagnoses could be said to increase change of recovery if the person is then warned not to overdo things and pace. Many get worst from not knowing what they have, so not knowing that they should slow down and rest when needed.
  13. RedLineBoy

    RedLineBoy

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    Life sucks. I went on to linkedin today and was browsing connection profile where I saw some of my old friends that I have lost touch with. Some of them are directors at large firms, few of them are patent lawyers and doctors. This got me thinking where did I go wrong? How come I'm still working at a restaurant while other progress, we all went to college together. Where did I go wrong? Ohhh...CFS..I'm really depressed. Every time I read or hear about my friends successI feel depress. I know this is wrong and I should not feel unhappy about it but why not me?
  14. Thinktank

    Thinktank Senior Member

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    Just out of interest, how did you overcome your OI and how do you know for sure your cognitive dysfunction was related to it?
    I've been to a cardiologist today and he said i might have OI, i do have a lot of the same symptoms so testing needs to be done.
    My main goal is to treat my rapidly declining cognitive function.
  15. Valentijn

    Valentijn Activity Level: 3

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    My blood platelet norepinephrine tested low, and someone else mentioned that Strattera, an NRI, had helped them with blood pressure problems similar to their own. I still have limits, but it's more due to a brain-PEM threshold. If I don't push myself by trying to do complicated things for extended periods, I'm usually doing fine.

    As far as the relationship with cognitive dysfunction - prior to starting Strattera I would have weeks where I couldn't sit up at all. While this was extremely annoying, I also noticed that my brain was staying functional all day if I was lying down all day. I could read books, etc, which I certainly couldn't when sitting up as much as I could.

    And really it's a matter of basic physiology. If your have OI because your blood is not circulating as quickly as it should, this will result in reduced oxygen transportation, etc. And as your head is at the highest point of your body when upright, it's going to be suffering the worst effects.
  16. peggy-sue

    peggy-sue

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    I did see on tv just last week, an image of somebody wearing special glasses with prisms in, designed so that the wearer can lie flat on their backs, but still read a book held up in front of them.

    That might be a very useful item for a PWME!
  17. Antares in NYC

    Antares in NYC Senior Member

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    I totally sympathise with you, RedLineBoy. It's difficult not to feel that way.

    Checking LinkedIn is one extremely depressing experience. Every time I check that site I see former work or school colleagues rising up and up. Even more depressing is the fact that many people that worked for me and I mentored a few years ago are now directors and VP's at firms everywhere. Even those who didn't seem that exceptional.

    I'm the one that's not moving forward in my career. You can see a steady progression until 2006... and I've been stuck at that mid-level ever since, unable to move any further, and always feeling at the edge of being dismissed by employers. Coworkers notice my cognitive CFS symptoms, and are often unkind in return. I once had a supervisor call me to her office, and she conveyed that people in my team were complaining about me. "You seem out of it. One junior level asked me 'what is wrong with him?' Tell me, what's happening? Can you handle the workload?"
    That was in 2010, when I was still convinced my problems were due to some sort of mild sleep apnea... or allergies... or some weird anemia.... or migraines... or whatever.

    In the last few years, as my cognitive issues have steadily worsened, I have noticed a steady pattern occurring, from employer to employer: I'm always one of the first ones to go in the event of layoffs. In the last three years I have been laid off twice, most recently this past July. Finding new work is getting more and more difficult. Not only I'm getting older, having to compete with younger and more energetic than me (at lower salaries), but employers notice how I've been stuck at the same level, unable to get a promotion. I can't even begin to describe the levels of stress that this situation brings, which makes my ME/CFS symptoms worse.

    I feel like I'm living inside a Kafka novel.
  18. peggy-sue

    peggy-sue

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    The secret of being happy in life is to want what you already have.

    I have absolutely no respect or admiration for those who climb career ladders in the pursuit of vast amounts of cash, stepping on others as they go, or who measure themselves by how much money they have.

    I do respect and admire those who make the best of what they have, and know how to enjoy it.
  19. Antares in NYC

    Antares in NYC Senior Member

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    One more thing I wanted to add:

    The worst of this situation, the part that breaks me to the core of my soul, is that ME/CFS killed most of my creativity. I used to be sharp, very smart, and extremely creative (both in my line of work, and in my personal endeavours). Now I'm a shadow of what I once was. I can handle repetitive, drone-like tasks, but my creativity has been severely curtailed. Creativity was my bread and butter. It feels like it's gone now.

    Retirement or disability are not options for me either, unfortunately so I have to work through this mess. These days, to make a living, I manage creative people. I basically book/schedule their time (for ad agencies and high-tech firms). Some of these creative folks are brilliant; some others are terrible, yet they make a steady living in creative fields.

    To me, this is one of the cruelest jokes that life has played on me. Just 15 years ago I was on my way to success. ME/CFS took away the tools I had, leaving me a speech-slurring, no-memory, no-attention span idiot that can only perform drone-like administrative tasks, and not even all that well.:thumbdown:

    As an analogy, I feel like someone that can't swim, but in charge of the management and schedule times of a swimming pool, watching from the sidelines while the rest of the people have fun in the water, under the sun.

    Ok, i need to stop. I don't want to get fully depressed today. :(


    PS: I got a small part-time freelance gig, which is good since I was having a very tough time finding work after the layoff in early July. Things got so bad this summer that I had to dip into my (already meager) 401(k), despite. Not that i had a lot of money in it, to begin with. I know I won't be able to retire. Vicious cycle. FML.
    Beyond likes this.
  20. peggy-sue

    peggy-sue

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