1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Science to Patients: Talking ME, Exercise and the Mitochondria - with Dr Charles Shepherd
The latest video release from the Dutch group ME/cvs Vereniging, with Dr Charles Shepherd from the UK ME Association, and announcing a live chat session to be held Thursday, April 10, 2014...
Discuss the article on the Forums.

Klimas Conference Video 3: Voices of Hope

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 11, 2013.

  1. Forebearance

    Forebearance Senior Member

    Messages:
    360
    Likes:
    99
    Great Plains, US
    Thank you for the report, Jody!

    It sounds to me like these three people had mild cases of CFS. I'm betting that those types of cases aren't well-represented in online support groups. I bet most people who post here have medium or severe CFS.

    So basically the hope that the presentation offered seemed to be that people with mild CFS who haven't been sick very long can get well. Or at least a lot better. We have always known that. I find cases like Dr. Deckoff-Jones' more hopeful. She became able to go back to work by taking anti-retroviral drugs.
  2. HowToEscape?

    HowToEscape? Senior Member

    Messages:
    197
    Likes:
    71
    "I’m also not convinced that early retirement and permanent disability are my hope for the future."

    Until this disease is properly recognized there's a vice effect. We must limit our activity and busyness levels to what the body quietly requests. But retirement/disability tends to be a downhill slide unless one is
    1. wealthy enough to truly afford it
    AND
    2. has sufficient friends, family and something useful to do that one doesn't become even more vegetative than the disease would impel

    I'm on disability myself and would rather work, but since I would not last a full day without sleeping on the job I don't have that option. Working a bit then getting fired would be a disaster! Had a part-time, project-based work at home option been available I could have avoided a ton of grief.

    The only "answer" is to shift into an amount of work that is slightly under one's sustained physical capacity, including other normal life activities. That may not work for your employer; someone who can work half a day or 2 days per week doesn't fit into a normal workflow. IF what we were dealing with were generally understood or at least known to be a Big Deal, like cancer or HIV then the world at large would be more likely to work with us.
    Right now there's no correct choice on the menu.
  3. Jody

    Jody Senior Member

    Messages:
    3,920
    Likes:
    433
    Canada
    You're welcome, Forebearance.

    Just going by my own experience, I wouldn't assume that someone started with a mild case on the basis of the fact that they have been getting better.

    I was unable to function for a number of years. I spent 16 hours a day in bed, and my actions when I was up to it were doing a bit of laundry, making dinner, spending half an hour with my family in the evening before going back to my room. I couldn't sit in a room with a tv on, my husband had to take the batteries out of a clock because its ticking drove me out of the room. I had such vertigo that walking across the room was an enormous challenge. Thinking for more than a few minutes would send me to bed.

    I had weird sensations like vibrating, numbness and small explosions of pain that would happen all day long, for over a decade. Big improvements back then were being able to walk for two minutes to the stop sign then back home and into bed, panting for air.

    I had such muscle and joint pain I couldn't hold a pen. I had to fill out my naturopath's form in 5 minute increments, over a period of a week or so. At the end of 5 minutes I was mentally blown, vibrating, and gasping for air. And off to bed.

    I could go on but who needs to hear all this?

    My improvement really began with my naturopath and "just" supplements. It took many months to see any improvement, but that's where the improvements came from.

    I was lucky to be able to work part-time online starting 4 yrs ago. Only worked maybe 4 hrs a week, and it was all I could handle. Gradually over the next 3 yrs, I took on more work as I was able to, and as of last winter, I was working online 50 hrs a week. It took everything I had but I did that for the better part of a year. Then some downsizing at work cut back my hours some but if that had not happened I would still be working 50 hrs a week.

    It's online, not like having to get dressed and go out, I don't have to stand up or count change or deal with customers. I can take breaks whenever I need to and everything is written down in an email or document so my lousy memory isn't a problem.

    People might look at me and assume I must not have been very sick. They would be way off the mark. I had no life for years. I am fortunate to have ... probably 3/4 of a life now, and reason to expect it to become more as I stay on my supplements and continue to pace myself.
    Valentijn, merylg and JAH like this.
  4. Starfive

    Starfive

    Messages:
    65
    Likes:
    36
    How great for you Jody to have a job that fits with your recovery!
    I miss working.
  5. Jody

    Jody Senior Member

    Messages:
    3,920
    Likes:
    433
    Canada
    I hear you, Starfive.

    I can totally understand that. Hang in there.

See more popular forum discussions.

Share This Page