The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Article: Laura Hillenbrand On ME/CFS, Her Formerly Athletic Life and How She Gets By: the SI Intervi

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 17, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. pine108kell

    pine108kell Senior Member

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    Not only is this an example of heroism, it is an example of how we are ill in different ways. Compared to me, I'm amazed that she is so physically limited but mentally capable of producing an award winning book.

    I'm sure writing must cause her problems and is very difficult, but for me, anything that complex mentally especially on a computer will make me physically sick--very much so. I used to be a research scientist and now thinking with complexity for any length of time makes me physically ill and very aggitated. Often, I can go out and function somewhat physically, even play very light sports. At least in terms of frustration, I would say that fatigue is my second worse symptom, just behind mental functioning, which keeps me from doing almost anything I enjoy.
     
  3. Enid

    Enid Senior Member

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    Sadly great for the whole ME/CFS community.:eek:
     
  4. Cort

    Cort Phoenix Rising Founder

    I'm glad you said that PINE - I mean that I'm sorry that you can't enjoy your God-given talents and something that is clearly a source of enjoyment to you - but it helps me design this survey we're trying to get together. Hopefully it will capture those for whom mental activity is actually more problematic than physical activity.

    When I have been exposed to chemicals I sometimes experience the same type of physical agitation when I try to engage in mental activity.
     
  5. mezombie

    mezombie Senior Member

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    Me too. :(
     
  6. Wayne

    Wayne Senior Member

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    Hi Pine,

    Thanks for your post. It's a very similar situation for myself. Last Friday, I thought I would attempt to do some organizing, so that I could have various things convenient to reach on each side of my bed (where I spend about 18-20 hours/day).

    For several hours, I was sorting through boxes, trying to figure out what to keep and what to throw away. And then trying to figure out where to put various things that I should keep. (In the process, I finally came across some long lost medical records).

    In short, after this mental marathon, I was a basket case for the next 2-3 days. Severe headaches set in, which was barely touched by some Tylenol 3 (with codeine). This in turn disrupted my sleep. The ensuing lack of synaptic function in my brain gave way to serious vertigo, and eventually to major discombobulation.

    The only thing that could give me some semblence of relief was when I would venture out for a leisurely walk. It wasn't easy, but did give me a break from the utter mental and brain exhaustion I was dealing with.

    Interesting thing happened on Sunday night: I've discovered that chocolate can sometimes relieve some of my headaches when they get so bad. So I ate an entire chocolate bar, and within an hour, not only did my headache improve, but most of my mental exhaustion symptoms lifted as well.

    I had a good break on Monday; slipped back on Tuesday morning, but am at a more normal baseline at the moment. Go figure. My best guess is that it's the Lyme that his impacted my cognitive abilities and mental stamina so significantly.

    Best, Wayne
     
  7. Sing

    Sing Senior Member

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    I'm glad we're talking about this. Cognitive dysfunction, pain, chemical sensitivities, low blood pressure, intolerance for much computer time or other electro-magnetic interference--these things impact my life the most. I can still take walks, do errands, get out and about, thank God. I have some writing ability but it is best I do it the old fashioned way. Same with reading. Couldn't possibly be on a computer or Kindle or cell phone much of the day! (What will happen to the next generation of children who will be in front of a computer screen all day?)

    Back to Laura--I am her total FAN! She is my hero. Her writing and choice of subjects is superb! I am so thankful she has been successful, for her, for us, and for the conveyance of those astonishing, wonderful stories. As Mohammed Ali said about his life and career, "I feel as though God is working through me." This is the case here too. And we get to be the recipients of it, who can deeply understand the story beneath and beyond the stories she tells so well. There is a profound empowerment here.
     
  8. Misfit Toy

    Misfit Toy Senior Member

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    The book "Unbroken" was fantastic and I know why she is so good at what she does, even though it doesn't necessarily make sense. How can she be so sick?

    I am great at designing jewelry. That's not an ego. I am good at it. Why? Because I love it. Even though I am not well and cannot understand things at times due to fatigue and fibro pain, I love making jewelry so much and it's a talent. She has a talent. Kenyon is primarily a school for writing. It is known for excelled writing, so she has that bug in her and she will make it work because she loves it so much. That's where she went to school. So, the bug had been planted.

    People come over and tell me "You have such patience to do this. It's so intricate." It's my livelihood and my business. I really don't have a ton of patience. I have patience for this and that is it!
     

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