Posts Tagged ‘pacing’

Striving for Boredom

Sunday, September 2nd, 2012

Fake Google Search Result

(Just kidding. …Sort of.  …Most of the time.)

I swear, I absolutely cannot wait until I have the mental stamina to actually do things while I’m stuck here.  Not that I don’t still do things sometimes, but not for long, and not without cost these days.  I’m beginning to think that I could live with being trapped on the couch, if only I could write something, or learn a language, or watch a pile of terrible TV, even.  What good is enforced isolation if you don’t come out of fluent in German and familiar with the cast of Gossip Girl?

I’m currently trying to be even more hardcore about respecting my limits and actually backing off of things that are too much of a stretch.  It’s super hard, though.  Much harder than I ever would have guessed it would be.  I was already trying to be better about respecting my limits before.  ;)   And a year and a half of limitations is starting to wear on my patience just as tad.  But I’m slowly coming to terms with the fact that “but I waaaaaaaant to” probably doesn’t hold up as a legitimate medical excuse, no matter how rarely it’s used or how trivial what I’m using it on may seem.  So, renewed commitment to less overdoing it, which hopefully means less backslides/crashes, and faster recovery.

Not that I’ve been going hog wild or anything up until now.   l learned quickly that doing too much produced some awful results (and there’s a cap on what’s possible anyway before my body shuts down), and I don’t think my recent activity levels have been holding me back at all, really.  I’ve been pretty careful overall, and most of the time the rare bit of “overactivity” we’re talking about here is stuff like “watched a whole hour of TV” or “read some stuff on the internet” or “took a phone call”  or “rode in the car to a medical appointment” or  “had a brief visit from someone close who’s moving out of the country in the next week.”  And really, this whole thing is kind of a balance between not taxing myself too much physically while still keeping from going completely mind-numbingly insane.

I’ve still been thinking of it like those crashes set back my progress slightly, but once in a while something comes along that’s important enough to make a small delay and some temporary physical misery worth the trade.

But I recently came across the patient guide for ME/CFS that the folks at Stanford University put together, and while I really did know that at heart, seeing some of their words in print like that is still a bit of a kick in the pants in putting some much-needed fear into me.

While in recovery, please do NOT overexert yourself.

  • A lot of our patients report that their level of functioning feels like a rollercoaster.  This description shows that the patient is overdoing it, and we believe that this behavior may seriously jeopardize the patient’s potential for a full recovery.  As soon as patients start to feel better, it is natural to want to increase their activity level; however, this is not advisable during the initial recovery process because it will likely lead to a crash.
  • We hypothesize that these crashes, or episodes of heightened fatigue, may have a cumulative effect on a patient’s health, and may compromise the patient’s potential for a full recovery.
  • Imagine that every time you crash, your immune system overreacts as a response (as CFS may be an autoimmune disorder).  As a result, the immune system attacks your body’s own cells in the Central Nervous System (CNS). Once these cells are damaged they may never recover.  Even in the best-case scenario, when the viruses have been successfully treated and kept at bay, the damage that has already been done to the CNS may never be repaired.  This may prevent the patient from fully regaining his or her cognitive and physical capacities.  Theoretically this is how overdoing it and the subsequent crashing which results may have a long-term negative effect on health.
  • Each patient is unique and should develop a routine level of physical and cognitive functioning that is appropriate for him or her.  Patients should feel like their functioning level is constant from day to day, so that they are not experiencing any crashes.  We feel that only once patients have learned to function under their threshold for crashing have they optimized their treatment plan and their chances for a full recovery.

I dislike phrases like “may never recover.”  Except in very specific circumstances.  Like, say, “The Jonas Brothers’ careers may never recover.”  But outside of that, it’s pretty much never good news.

Anyway, it’s still just a hypothesis, but they’re not the first group to make those observations.  And if there is a permanently limiting component to this illness, I can’t help the damage that’s already been done while my doctors were still misguidedly pushing me towards more physical activity.  But if I can help it, I’ll very much try not to make things worse.  …Even if that means temporarily giving up some of what little life I have.

The best laid plans

Thursday, September 8th, 2011

Every now and then I try to take on too much (“too much” in this scenario meaning, like, make a phone call, or attend a doctor’s appointment in a reclining wheelchair, or have a quick visit with a friend who has to let themselves into my house because I’m stuck lying on the couch), and after the resulting crash, I tell myself that clearly I need to pace a little better, and take a little more rest time, and not agree to even little things too close together.

And I rest. And I feel a little better. And then I start to think that maybe my condition is improving. And that maybe now I could surely handle a quick visit with a friend.

I am an idiot.