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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Living the Half-life of ME/CFS

Discussion in 'Phoenix Rising Articles' started by wdb, Nov 7, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    Hanna, meandthecat, rosie26 and 4 others like this.
  2. Nielk

    Nielk

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    Thank you, Jody for a beautiful account...again, of your personal account of living with this disease. You have such an effective way of writing. I can imagine in my mind your first visit back to the library.

    Congratulations on your daughter's marriage!

    It's interesting that I'm reading this article of 'half life' today. Yesterday, I went to a chiropractor who also uses energy medicine. He worked on me with manipulations for about a half hour in silence, when he suddenly stopped and declared; 'You know why you are so sick? It's because only half of your brain is functioning!' I was taking aback, but he continued to explain that my brain can't control the function of keeping the body in a healthy state because it is only half-functioning.

    I never heard it explained that way. Is he describing neurological damage? I'm not sure but, needless to say that he continued working on manipulating my head for another 20 minutes!

    Thank you for your article.
    merylg likes this.
  3. Jody

    Jody Senior Member

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    That is interesting, Nielk. That is something I've not heard before. But I would always at least consider the impressions and feedback from people who do any type of energy work.

    I had a woman do Reiki on me a few years ago. After two sessions she told me she needed to teach me how to do it myself. This was because she considered my situation to be so extreme as to need this treatment every day.

    I can't say I'm very good at it but I try. And I think she was right in her assessment of just how depleted my energy was.

    As to what he was describing to you ... of course this is just a guess -- He might have meant neurological damage but not necessarily. I think there are likely many possibilities. could be anything from vertigo to clogged blood vessels, to inadequate neurotransmitters to low blood volume to ... well, you know, all kinds of things could be involved.

    And it's possible that he may have been trying to describe something and not been able to put it into words correctly. But from my past experience I'd suggest that you not worry too much about what the specifics might be, and just see instead if his continued attentions to the area make a difference you can notice, over time.

    I don't understand how energy work does its thing, at all. But I do know I've benefitted from reiki and acupuncture. My chiropractor does laser treatments which to me seems like a form of energy work. Five minutes with a laser almost always makes a difference for my bad knee or my bad shoulder or ... Energy treatments may well have been among the main things that have helped me to continue to recover.
    merylg, SickOfSickness and Nielk like this.
  4. slayadragon

    slayadragon Senior Member

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    That sounds to me exactly like how people who are sensitive to biotoxins react when they go to a bad place. And like schools, libraries often do not have very good maintenance budgets and thus can be really moldy.

    In general, I avoid going to libraries. If I did go to one and it gave me a bad reaction such as the one you describe, I would shower immediately after getting home and bag my clothes that I wore to the library to be washed. And then not go back.

    Because if not going to a bad library or taking a shower before getting into bed can keep me from getting sick, that sounds like a smart plan.

    Best, Lisa
    merylg likes this.
  5. Jody

    Jody Senior Member

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    Slayadragon,

    Could be a possibility. But the thing is, once I had been back in there a few times, and the place became more familiar again, my neurological reactions diminished, to the point that I could go in, pick out books and carry on a coherent conversation with the librarian, and felt fine when I walked out again. Mind you it took many visits over a period of a few months to get to that point.

    I had the same type of vertigo-ridden, vibrating reaction to any store or someone's home, the first time I went back in after getting really sick. Floor would seem to rise up in waves, walls and store shelves would move in and out and I would stagger along feeling like I was going to bump into things... couldn't remember why I was in there, could not speak a sentence nor understand things that were said to me.

    It really seemed to me like there was some kind of sensory overload, and like my nervous system was just not up to sorting itself out as I moved around. As the place became more familiar again and moving about was more "on automatic" I would become more normal in there.

    Happened everywhere I went at that time. And even while I could go into places and feel fine when they were places I frequented, if I went somewhere new or someplace I hadn't been in some time ... I was back to square one again, as my nervous system (or whatever it was) would become confused and lost again ... till the place became familiar.

    Weird.
    RosieBee and merylg like this.
  6. slayadragon

    slayadragon Senior Member

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    That is very interesting, Jody.
  7. Jody

    Jody Senior Member

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    Yeah. And weird.:)
  8. penders

    penders

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    I thought that was a brilliant account of living with ME Jody. I could relate to absolutely everything you said. I hope you go from strength to strength. I'm going to print it out (remove your name so it remains anonymous in case you would object) and sent it to members of my family who don't understand. Thank you.
    RosieBee, Firestormm and merylg like this.
  9. Jody

    Jody Senior Member

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    Thanks Penders.

    You don't need to take my name off it, they won't know me anyway.:) I hope it helps some of your family to understand the enormity of what you're dealing with.
    Firestormm likes this.
  10. Suella

    Suella

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    I too suffer from remaining upright in a stationary position. If I move it seems that that gets the blood supply moving and stops the dizziness. I don't have tachycardia or blood pressure problems standing. If I had to stand in a line (queue) I couldn't.

    My solution? A wonderful inexpensive tripod camping stood with a shoulder/carrying strap. It gives me a normal height tripod canvas seat which unfolds very quickly.

    This got me out of the house, on my own, and I sat as soon as I knew I needed to. I thought I'd be stared at but in an urban environment I was completely ignored. Little by little I walked some more steps and have improved a great deal.

    I still can't stand upright and still for long though, so take my stool which hangs down under my arm discretely.

    Do others have tools that help them increase their range and ability?
    Suella
    RosieBee, justy and rosie26 like this.
  11. Valentijn

    Valentijn Activity Level: 3

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    Actually if your blood isn't moving sufficiently, that is a blood pressure problem. It should show up as a low pulse pressure (the difference between systolic and diastolic measurements).
  12. Jody

    Jody Senior Member

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    Suella,

    That's a smart solution to a potentially limiting problem. I had the same type of problem for several years -- could not stand up for long and could not stand in place for more than a minute or two at most. I would become shaky and dizzy and need to prop myself up against something -- or better yet, sit down -- or better still, lay down.
  13. anniekim

    anniekim Senior Member

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    I've been bedridden now since last December, housebound previous to that, needed to use a wheelchair before that on short trips out and previous to that, now 8 years ago, I too used a stick that turned into a seat and would use it in queues etc. it was very helpful for my abilities then. I got a few stares but not many and they didn't bother me as the seat allowed me more independence.

    Great article Jody. You write so well
    RosieBee likes this.
  14. Jody

    Jody Senior Member

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    Thanks Anniekim.

    I'm so sorry to hear that you're bedridden for so long. That makes life so hard. I hope that some recovery is ahead of you soon.
    anniekim likes this.
  15. taniaaust1

    taniaaust1 Senior Member

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    I tend to use a lot of tools and disability aids to help me. I had a cane chair (is like a cane but then folds out into a seat) to help me when out. Im about to receive a wheelchair thou, the cane chair isnt enough.
    RosieBee likes this.
  16. Jody

    Jody Senior Member

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    Taniaaust1

    That sucks about needing a wheelchair, on the other hand, it will be a good tool to help you get around. Maybe you'll be able to get back to that cane chair again one day. It sounds like a pretty cool device.
  17. roxie60

    roxie60 Senior Member

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    I noticed today while sitting at the computer typing I started seeing stars, the kind one usually see just before fainting, all though I was sitting, I didnt feel like I was going to faint but I know something had changed in my body just not sure what it was. Wish I had a cuff on just at that moment to check pressure.
    RosieBee likes this.
  18. Jody

    Jody Senior Member

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    I get some weird visuals from time to time as well. Not sure what sets it off. For awhile I was prone to having squiggly black lines moving especially in my peripheral vision, sometimes in both eyes, sometimes just in one.

    I got hurt once by a chiropractor (quit going to him after that) leaving me with intense pain around my neck, shoulders that lasted for weeks. And I was getting this visual thing for a couple of weeks after as well.
  19. roxie60

    roxie60 Senior Member

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    I saw this in my research tonight, not sure if it applies to your sit but thought of you when I read it.

    ***************************************

    There is also something that is called "Scheerer's phenomenon" or "blue field entoptic phenomenon".

    This is basically the ability to see white blood cells traveling through in the squiggly capillaries of your retinas... especially when looking at a blue light. (like the sky)

    When a leukocyte travels through.. it makes a wiggling motion. The link below is very interesting and even has an impression of this phenomenon. "Scheerer's phenomenon"

    http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/77825

    How lyme impacts the eyes - legit sources from Marnie, 2-22-09

    http://www.pubmedcentral.nih.gov/articlerender.fcgi? artid=504579

    http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/ 76692?#000007

    Originally posted by Rebekah 6.7.09
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  20. Jody

    Jody Senior Member

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    Thanks Roxie

    Not sure I want to see white blood cells ...:) Looks interesting. I will check out your links.

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