Sunday, July 8, 2012


I know I do this often, but when I find a post I really like, linking it seems insufficient.  I have yet to use a heart rate monitor, but I have been saying no to more things hoping it leads to a world of yes's in the future...Its also the most often heard comment I get from those that think they understand this illness but have absolutely no clue..."I always feel better when I exercise or get out when I'm not feeling well..." I can't tell you how many times when I have turned down invites, said I couldn't wash the dishes, that I have heard that "advice" and how many times I politely smile and try to educate that this is the hallmark difference with Chronic Fatigue...and the most frustrating part about here is the post...and the link to Jennie Spotila's blog...Occupy CFS

Can’t Drive 95

Almost as soon as I had decided to raise the limit on my heart rate monitor to 105 beats per minute, my physical therapy team smacked that idea down. They told me that one week with the monitor was not enough to really get the hang of pacing, and suggested that I was raising the limit so the monitor would not go off as frequently rather than because of any real improvement in my energy management. On their advice, I set the alarm back down to 95 beats per minute.
They were right.
One week was not enough. Neither is one month. My activity sets off the alarm multiple times a day. Climbing stairs, carrying objects, making the bed, moving anywhere too quickly – it all sets off the alarm. I tracked my activity, position and heart rate carefully for several weeks. And I tried – I really really tried – to make different choices and limit my activity.
It worked, sort of. After recovering from a family event, I went three weeks without a crash. My pain levels have decreased. I haven’t ended each day crawling into bed at 6:30 pm, shaking and exhausted. But this came with a price. I did not leave the house for those three weeks. I was much less productive than normal – just more inactive overall.
And I was miserable. I worried about the long-term effect of being even less active than before. I was bored, so terribly bored. I realized that pushing hard to exhaustion actually prevents me from feeling bored. If I’m completely wiped out, my brain can’t care about the fact that I’m spacing out to a baseball game. It doesn’t bother me when I’m too tired to care. But now I’m aware/awake enough to notice that I’m doing nothing, thinking nothing, and that I’m bored.
I feel the bars of this prison more acutely. It’s like standing outside a bakery and looking at the goodies in the window. I can see the things I want to do, but I can’t touch them without setting off the monitor. So I stand at the glass and stare. I want to fuss in the garden, tidy up, bake bread, cook dinner, write more blog posts, read read read the stack of articles in my queue, take photos, visit with friends – and I can’t. Not without hearing the boo-doop chime of the alarm. These are all things I did before, and I accepted the consequential pain and exhaustion. Now I am not doing them, and struggling to accept the consequential boredom, loneliness, and despair.
It’s a trade off, either way. But which is the right choice? When is it better to be bored? When is it better to be in pain? Living with CFS is always about moving targets, shifting limits, and hard choices. Wearing the heart rate monitor is designed to help me stop before I get to pain and post-exertional relapse. When I obey the alarm, it works; I experience much less pain and relapse.
But is it worth it?
What kind of life is it to stop halfway up 13 steps to rest? To not be able to cook and then also do the dishes? To not kick the ball around the yard with the dog for a few minutes? To say no, no, and no again to invitations and fun plans? To shrink my world so that I’m not free to move within my own home without a chime sounding? To sit and sit and sit and sit and sit and all the time knowing that I am sitting while opportunities slip by?
There are people with CFS who are bedridden. I am fortunate to have only suffered that way for short periods of time. But when I have been that ill, I have been so hazy and weak that I didn’t really notice. It’s like the first few days after acute gastroenteritis, where you’re not throwing up (which is good) but you can’t do anything else (and you don’t care).
Living with this heart rate limit is not like that. This feels like a cruel experiment. There’s a plate of cookies on the table in front of me, and I want a cookie. But every time I reach for the cookie, I get a powerful electric shock. So I sit, looking at the cookies, acutely aware that I can’t have one. I’ve made these adjustments before. When I gave up my job. When I gave up driving. When I gave up cooking dinner for friends. When I gave up walking more than 50 yards and submitted to using a wheelchair. I’ve been there, done that. And each time, it did not feel optional. I gave those things up because to continue doing them meant unbearable pain and exhaustion. But these day to day life things that set off the heart monitor are not like that. No single thing – carrying a few books up stairs, kicking the ball for the dog – puts me down. But cumulatively, or done for too long, these things do knock me out, and the heart monitor can prevent that.
What I’ve learned since strapping on the heart rate monitor is that the glass box of my limitations is too small. If I obey the monitor, if I focus on setting it off as little as possible, I will lose my mind. I will sink into deep depression, isolated and unsatisfied. I will resent the healthies in my life. I will surrender more of myself to this greedy illness, and I will live each day focused on what I cannot do rather than on what I can. The longer I wear this monitor, the more clear it becomes to me that I cannot abide the speed limit of 95 beats per minute.
Edited to add: My friend Wilhelmina Jenkins posted a comment on Facebook that I’ve posted with her permission below, but one sentence really captures how I feel: “How long can you stare at the cookies in the window without feeling that you are starving to death?”

just thinking about it

I decided today, after having that glaring headline in O Magazine that I was slowly killing myself by being sedentary trying little things - arm stretches, head rolls, reaching to the sky, moving my ankles up down up honestly feels absolutely ridiculous - but no one is watching - so why do i care.  Sometimes its just so much easier to not move and wait out the day - but today I thought I would try this little experiment, just a little momentum - move slowly.  Then I saw this link on Sue Jackson's Blog - on exercise intolerance, I became intolerant just looking at all the information...I'll let you know how it goes, and if I have enough energy will read more on how to not be so tired...except right now reading all about it is making me exhausted:)

I realize this messed up all of the margins...but can't figure out how to fix it...oh well...the mixed up nature of it mirrors how i feel right now quite fitting

Post-Exertional Malaise: Resources for You

Post-exertional malaise or relapse is a hallmark symptom of CFS. Here’s how one person with CFS described it:
“Muscle wilting meltdown, air gulping short of oxygen feeling, brain blood vessels flayed on a laundry line in the wind, metal rods in the back of head . . . someone crushing your ribcage, limbs giving out, mesh bag constricting head, ‘pingers’: those first small headaches that warn of bigger headaches, ‘back of head clamp’ headache, increased gravity feeling, being pushed backward into bed, temple-to-temple headache, weak arms as if bound down by stretchy ropes, eyes and brain blanking with a kind of pulse through the head . . . Harm and damage often come from these collapses, though on the outside they may look like ‘malaise.’”
Over the years we have developed and published many articles and resources about PEM. We collect several of them here for the benefit of those new to the subject and ready reference for others.
Overview articles About PEM:
  • The Hallmark of CFS
    By Suzanne Vernon, Ph.D.  |  Originally published Feb. 3, 2010 in CFIDSLink
    This article describes PEM and research results from the Pacific Fatigue Lab.
  • Unraveling Post-Exertional Malaise
    By Jennifer M. Spotila, J.D.  |  Originally published June 2010 in CFIDSLinkPart 1 of 4: This article examines the definition of PEM and how CFS patients experience it.
  • Post-Exertional Malaise: Perception and RealityBy Jennifer M. Spotila, J.D.  |  Originally published August 2010 in CFIDSLinkPart 2 of 4: This article examines objective evidence of PEM and how it differs from fatigue in other illnesses.
  • Post-Exertional Malaise: Cause and Effect
    By Jennifer M. Spotila, J.D.  |  Originally published August 2010 in CFIDSLinkPart 3 of 4: This article examines the topic of kinesiophobia and what mechanisms may cause PEM.
  • Post-Exertional Malaise: Power to the PeopleBy Jennifer M. Spotila, J.D.  |  Originally published September 2010 in CFIDSLinkPart 4 of 4: This article examines what patients can do to cope with and avoid this incapacitating symptom.
  • Click here to download Jennie Spotila’s four-part PEM series in PDF format.
Articles About Balancing Activity and Rest:
  • When Working Out Doesn’t Work Out
    By Christopher J. Snell, Ph.D., Mark Van Ness, Ph.D., and Staci Stevens
    Originally published summer 2004 in theCFIDS ChronicleThis article examines exercise and ways people with CFS can balance activity and deconditioning.
  • Doc to Doc: The “Skinny” on Exercise and CFS
    Q&A with Drs. Lucinda Bateman, Nancy Klimas and Susan Levine
    Originally published summer 2006 in the CFS Research Review This interview with three expert physicians explores recommendations to avoid PEM and deconditioning.
  • Alternative (t0) Exercise
    By Sabine Miller  |  Originally published winter 2008 in the CFIDS Chronicle
    This article presents one woman’s approach to nontraditional forms of exercise to combat PEM.
  • Managing Your Energy Envelope
    By Bruce J. Campbell, Ph.D.  |  Originally published winter 2009 in the CFIDS Chronicle
    Dr. Campbell presents nine strategies to help manage energy and use it to its maximium effect.
  • The “E” Word
    By Jennifer M. Spotila, J.D.  |  Originally published Oct. 2010 in the CFIDSLinkAs a follow-up to her four-part series (above), Jennie looks at ways that people with CFS can be active without triggering PEM
Articles About PEM-Related Research Issues:
  • To PEM or Not to PEM: That is the question for case definition
    By Leonard Jason, Ph.D., and Meredyth Evans  |  Originally published Apr. 27, 2012 on
    This article looks at the way that PEM is described in various case definitions.
  • From Discovery to Application
    By Dane Cook, Ph.D.  |  Originally published Apr. 16, 2012 on
    Dr. Cook refers to two recent biomarker studies and connections between them.
  • Breaking Ground
    By Kim McCleary  |  Originally published Feb. 23, 2012 on
    One of the research projects announced as part of the Research Institute Without Walls will examine patients’ cognitive performance and blood and brain markers after modest physicial exercise challenge.
  • Toward Consistency
    By Kim McCleary  |  Originally published Feb. 8, 2012 on
    This article summaries a publication from members of the CFS Advisory Committee about ways to better standardize research data in the study of CFS, including standard measures for PEM.
  • PFL Testing for Post-Exertional Malaise & Disability
    By Staci Stevens and Christopher J. Snell, Ph.D.  |  Originally published Nov. 18, 2011 on
    The Pacific Fatigue Lab has become the premier center for test-retest exercise testing to document PEM.
  • Exercise Challenges Reveals Potential Biomarkers
    By Kim McCleary  |  Originally published June 2, 2011 on
    Research results published by Kathleen Light’s University of Utah team following modest exercise promise blood markers for CFS and PEM.
Webinar Videos:
Other Topics That Intersect with PEM:
Kyle Kenney is the CFIDS Association of America’s summer science communications intern. Kyle is a sophomore industrial engineering major at the Georgia Institute of Technology and a native of Charlotte, North Carolina. He has family members with CFS.

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