1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
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Do you work / have career?

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

  1. Olena

    Olena

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    Hello everyone! I have a lot of work before the onset of illness (getting up at 6 am and went to bed at 12 at night), very strong, I love to work, I walk a lot - more than 10 miles a day.

    I got the VEB and zoster virus, but continued to work. I had a lot of damage: breathing (could not breathe), numbness hands, shaking legs, I wanted to sleep all the time.

    I benefit from treatment, but a lot of nerve damage from the varicella zoster.
  2. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Hi Olena, are you able to work now?
  3. Olena

    Olena

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    Yes, now I'm working as usual, but it's hard.

    I benefit from treatment with human immunoglobulin against Epstein-Barr virus and Monolaurin.

    I like the load on the muscles, I feel that this is necessary for my :)
  4. RedLineBoy

    RedLineBoy

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    How is that Dr. Jacob Talibeth or whatever his name is is able to work / promote his product from fatigue to fantastic if he has CFS.

    He claims he has CFS, but then how did he end up finishing med school?
  5. SickOfSickness

    SickOfSickness Senior Member

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    I don't know about him.

    But many people can "push through" for 1-10 years. Because many of us are "type A" personalities, or even if we're not, we enjoy doing a lot. Some of us were workaholics and if we felt ill, we'd ignore it, and continue working. Push ourselves harder and harder.

    We SHOULD stop and rest, but before there were internet ME/CFS groups, we were less likely to know this. Often we were misdiagnosed so we have no clue we're seriously ill. Anyway, after months or years, we crash harder, and probably are forced to stop working full time (or part time).
    Olena and rosie26 like this.
  6. Lou

    Lou Senior Member

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    Just my opinion, but I'd be careful listening to Teitelbaum's advice.
  7. SickOfSickness

    SickOfSickness Senior Member

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    Also, maybe he was feeling rundown and bad, and "cured" himself with the supplements he recommends.

    I think many people attribute their cure to something wrongly. For example they take some expensive new herbal treatment, and think that cured them, but actually they got cured because they moved to a house without mold.

    (I don't think lack of mold would cure someone with ME/CFS, or very few, but I can't think of an example, and someone might think they had ME/CFS but they were suffering from mold poisoning.)

    Or their improvement/cure was not for any specific reason but their immune system finally got better.

    There are so many types of people with ME/CFS too, and sometimes they have good cognitive abilities, just bad physical. Or the other way around. So someone could work at home or do some types of work, if they had a job that fit their remaining abilities.
  8. Antares in NYC

    Antares in NYC Senior Member

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    Hi everyone! I just wanted to drop by and say hi. I'm still standing, but frankly I don't know how I do it.
    I haven't posted in these boards since I got a new job, a very demanding gig that's putting me closer to a major crash, but helping with the bills. Things were getting pretty dire at the end of the summer, so I had to bite the bullet. Since September every day has followed the same routine:
    • Wake up early, go to the office...
    • Work, work, work, then work some more, while hiding my obvious signs of ME/CFS
    • Head back home, barely crawling my way up the stairs, crash in the couch, with extreme exhaustion, absolute zero energy.
    That's been every day since then. Over the weekends I basically lay in bed on in the couch, with zero energy, recovering from the work week, preparing for the dreaded Monday.

    It's good to have an income, since I was drowning in medical bills, but I actually fear I will collapse one of these days, badly. Like really, really bad, which is starting to scare me, sincerely.
    I still fantasize of an exit strategy. I'll try to save as much as possible (which is difficult in a city as expensive as NYC) until I can no longer work, and then probably move out. My girlfriend and I have been discussing the idea of actually moving away, far away, somewhere with mountains and clear air, lay low for a couple of years. It sounds nice, but the reality is that I can't afford not to work. Still hoping for a miracle.

    I've also been dealing with awful and terrifying secondary ME/CFS problems, including bleeding Crohn's and even scarier results from a CT-Scan. One of my doctors requested more tests, but I've been battling my horrible insurance since they decided not to pay for the last ones. Bastards! Just another headache, on top of dealing with the medical nightmares. What a miserable existence it has turned out to be. Sorry, just venting, not trying to be negative.

    Anyway, just wanted to say hi. I miss chatting with the gang here, but I'm too tired at the end of the day to even post. I'll try to keep up here and there. Best regards, everyone.
    Last edited: Oct 31, 2013
    Sushi and Firestormm like this.
  9. Marlène

    Marlène Senior Member

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    Edegem, Belgium
    hello Antares

    Hi again, so sad to read you are still in this dreadful situation. If you have Crohn, did you stop eating gluten already? Have you ever heard about low dose naltrexone? Don't you have any medicine at all for your adrenals?
    Antares in NYC likes this.
  10. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I am glad that you checked in, even though your news is not cheerful.

    Could you get a job similar to the one you have now in an other part of the country where the cost of living would be a smaller percent of your salary, even if your salary were smaller? That would allow you to save more money, if you could survive the move.
    Antares in NYC likes this.
  11. Antares in NYC

    Antares in NYC Senior Member

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    As expected, I crashed. Major ME/CFS relapse last night. Slept 18 hours straight and I'm basically a zombie, a total mess today, bed-bound, completely depleted of energy, fever, painful and enlarged lymph nodes, extreme fatigue.
    I'm heading back to bed. I don't know how long I'll be able to pull this full-time work thing...
  12. Antares in NYC

    Antares in NYC Senior Member

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    Hi Marlene,
    My gastro doctor performed a number of tests and assessed that I seem to be developing Crohn's, and I'm currently scheduled for more tests in the coming days and weeks. I have not been given a special diet or any restrictions yet. Same for medication. My adrenals look ok.

    It seems like my ME/CFS symptoms stayed more or less stable for a few years, but since 2011 my health took a nosedive, and I have experienced all sorts of systemic issues popping up all over (immune issues, recurrent pneumonia, severe stomach issues, worsening brain fog, etc). Among those many issues, I got sudden food intolerances, and episodes of bleeding that appear to be an indication of mild Crohn's, but they are testing me for even scarier stuff. I have a capsule endoscopy in a few days, which we hope will shed light on some of these issues.
    Last edited: Nov 4, 2013
  13. Antares in NYC

    Antares in NYC Senior Member

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    That could be an option, but before I get there, I need to save enough money, and also reduce some of my debt. It's difficult to get ahead in NYC, on account of the cost of living.

    Ideally, I would take a couple of years off and move to the countryside, away from the toxic and stressful environment of this city. I feel my current path is not conducive to any healing or improvement if my ME/CFS issues. As I explained, I feel that my current situation will only make things worse. I'm worried. This weekend I had a major crash, and spent the weekend in bed, exhausted, messed up, as a consequence of the awful workload and stress. I'm not sure how long I'll be able to do this, frankly.
  14. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Could you reduce your debt faster if you lived somewhere where the cost of living is less? (I am no more a financial adviser that a medical adviser.)
  15. SickOfSickness

    SickOfSickness Senior Member

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    You have warning bells going off like mad. It's expected to feel like you cannot change things yet. It's difficult psychologically and practically but it can be done.

    Everyone is different but for every week that you push yourself, you may spend another week or month ill, when you do crash. (And perhaps more than a month.)

    A typical healthy person will be bored and unhappy and pitying themselves after one week of a flu. Imagine months of it, with no end in sight. Knowing that you could have prevented months of it.

    People are bad at weighing choices when the consequence is months or years away, but most of us on this forum can look back with deep regret.
    Little Bluestem and Valentijn like this.

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