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I Hate the Karnofsky Scale

Discussion in 'General Symptoms' started by jenbooks, Nov 28, 2010.

  1. jenbooks

    jenbooks Guest

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    In response to reading Jamie Deckoff-Jones statement elsewhere on here that she and her daughter are solidly at 80 Karnofsky points. I should note I'm thrilled they are improved in whatever ways they self evaluate that improvement, but that internet reports and especially the Karnofksy scale really irk me deeply.

    I do not really find the Karnofsky scale useful. Perhaps as some very general indicator.

    It can be found here:

    http://www.anapsid.org/cnd/diagnosis/karnofsky.html

    As far as my life goes, on a day I have a migraine, haven't slept because of toxic or bad mold exposure, asthma from hayfever (I don't take medicines), or whatever...I feel like I'm btw 60-70 so put me at 65. If I need to find a place to rest, to nap, to whatever, then my partner will do the shopping, take care of our life needs for that day. He pitches the tents, on the occasions we've gone camping, though I have tried but I'm not too good at it. His assistance benefits me greatly. This is 60: Disabled; dependent. Requires occasional assistance; cares for most needs.

    On days I've slept and am in a decent environment, I feel like a 90. This is 90: Able to work. Able to carry on normal activity; Minor symptoms. I really do vary btw 60 at my worst ("please drive me, I haven't slept, I'm exhausted, I feel like I can barely function"...although, even on 3 hours sleep the other day I drove half a day...very slowly...as we have two vehicles now so there was no choice)...versus, "I feel good, it's sunny, I slept, I'm going to run some errands, let's take a walk, etc.) Today I don't know what I'm at but PMS and maybe the fabric softener on the hotel bed has led to bladder inflammation, so I only slept about 5 hours , but I'm doing all our laundry by hand--blankets, sheets, clothes, in the bathtub, to avoid the hotel gunked up toxic washers--walking around the hotel to discreetly dry stuff out back on my truck in the sun, wringing stuff out etc. I don't know what I'm at today but I sent him into the city an hour away to get me some probiotics for this flareup and some raw foods. I *do* need that assistance. I couldn't do all this myself--the laundry *and* go get the probiotics an hour away. And that *is* because of my condition--whatever combo of mercury poisoning, fungus, lyme, and MCS, whatever version of this condition is specific to me----or I could use a normal gunked up Tide and fabric softener washer, and wouldn't need a probiotic at all. And of course if I had my own safe nontoxic house in a good place, I'd have my own washer--eventually I hope and pray life will be smooth and easy like that...

    80 is Able to work. Normal activity with effort; Some symptoms.

    Jamie says she and Ali are solidly at 80. Ali quit school as it was too stressful, and she was afraid she'd relapse. Sounded like a wise decision and she's enjoying writing--but is that 80? Jamie wants to go back to work part-time. Is that 80? I guess my interpretation of 80 would be someone with a fulltime job who has a moderately intrusive condition, like arthritis, or diabetes, something that does intrude, but doesn't prevent a normal life.

    What the heck is 80 on the Karnofsky scale in reality?

    I've been frustrated with the various scales out there ever since I first browsed them. I really dislike these scales. Perhaps they are just too bare bones and subjective. I know there are a few others that are very popular and I look at them and they don't reflect my life. And what if I'm an 80 on a certain day but the symptoms have me depressed and frustrated? These scales don't seem to really reflect a life except in the vaguest terms and what is their purpose anyway? I have written this on this board a while ago, maybe a year ago.

    Another thing that really irks me is when people post, "I'm xx% improved." What is that predicated on? I once had a CFIDS sufferer write me that he was 35% improved and on his way to wellness and would return to work. Shortly thereafter he got his SSDI...maybe that was just a good day or week????

    Don't most people vary--perhaps not as much as me, more MCS-types vary like me (Dreambirdie being a case in point--I dovetail with her ups and downs)...but anyway...

    I feel grateful in contrast when people report their actual abilities and disabilities. Can you take a 15 minute walk? An hour walk? Can you now hike mountains (like Erik Mold Warrior)? Can you travel without crashing? How is your cognitive function. Etc etc.

    I do think, for those with POTS or push-crash, as mentioned in this thread, the lessening of either symptom in that case would seem a very secure marker of improvement. I don't really have push-crash, though. Maybe if I didn't do all my therapies I'd have crash-crash
  2. floydguy

    floydguy Senior Member

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    I completely agree. As I posted on the other thread, there can be huge variation from day to day or different times of the day. To MD's consternation, I refuse to give a score. I don't find it helpful to even attempt it. I think people are often overly optimistic about their recoveries. Dr. Bell noted that if people can get beyond one or some of their worst symptoms they proclaim themselves well when in reality they are still extremely sick.

    I think it's only helpful if one knows another person's profile (symptoms, lab abnormalities, etc) during the worst part of their sickness. And then what they did and how their symptoms and labs have changed over time. Some people's improvements don't have any interest for me as their symptoms and history is so different than mine.
  3. Dreambirdie

    Dreambirdie work in progress

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    Yes, JB, the scales are overall stupid. When you have a C-H-R-O-N-I-C health condition, you will have many ups and downs, regularly, religiously, and absolutely. It's just too crazy making to give yourself a number or percentage of wellness, when you know that number is going to be in constant flux.

    My scale, in the most general reasonable terms, is more like: unbearable misery, moderately bearable misery, feeling remarkably not miserable and feeling damn fucking good. Hola!
  4. jenbooks

    jenbooks Guest

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    DFG lol, Dreambirdie. Oddly enough, DFG is the opposite of GFD which is the godforsaken desert...maybe there's some anagram-mystery-school wisdom there...

    Well I am so glad you both agree with me, because my roller coaster existence has never been reflected in any scale.
  5. Dreambirdie

    Dreambirdie work in progress

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    You know, that kinda feels significant, as I am not a fan of GFD and can feel DFG without it.
  6. justy

    justy Senior Member

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    YES! i like this.

    I always found the Bell scale quite useful until recently when i was trying to judge my % improvement (silly really and i've now given up)
    I have been so plesed with my progress, yet when i looked at it realistically i was boasting about having gone from 30 (on the Bell scale) to about 45.Now dont get me wrong, i am really grateful for all my improvemntst that last, no matter how small - but realistically i had to see that 30 up to 40/5 was not significantly recovered. Then i just felt miserable at how far i still had to go up the scale And i have never been able to work full time - but didnt really consider myself disabled when i couldnt.

    I am trying to be more guded by how i feel, that day, at that time and act accordingly.
  7. Dreambirdie

    Dreambirdie work in progress

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    Yes, me too. I haven't "worked" at a job for decades. But I have managed rentals on my property for 15 years, and taken care of other business pertaining to keeping my own house and yard in shape. I have done a lot of creative projects--painted about 300 paintings in the past 5 years, made a CD of my own music in 2000, made a documentary film by myself on the computer in 2007, and maintained several friendships and a relationship along the way. So where in the hell does THAT fit on the Bell scale? I still can't go to the grocery store by myself on most days, but at least I can write a really good song about it!

    I think being in the moment with how you feel and effectively taking care of what you need in that moment is what we should be "graded" on. I give myself a 98% on that.
  8. Angela Kennedy

    Angela Kennedy *****

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    THANK YOU EVERYONE!

    These scales are so unstable in meaning from patient to patient, are self-reports which can be affected by over-optimism (or pessimism), deference, bounded rationality when trying to deal with a highly complex condition with multiple system dysfunction and other unknowns, and rely on a snapshot when we know this is a condition subject to variation day-to-day (as are most chronic conditions!)

    I think these scales are pretty useless to be honest, because of all the confounders present.
  9. caledonia

    caledonia

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    I don't like the scales either. I would modify them to have separate physical and cognitive scales, and then use a range of numbers to represent your worst and best days.

    For example, if I used the current scale, I would be about 30%.

    If I used the modified scale, I would be 10-30% physical and 50-80% cognitive.
  10. justy

    justy Senior Member

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    Thank you so much DreamBirdie, it think you just made my day. Yes, i have also done many productive things that have made me happy, even with this disease, so long as i dont keep trying to compare myself to the so called "norm" It was trying to be "superwoman" that caused my latest crash 2 years ago, and i never want to go back to having to feel that i MUST do all these things at the expense of myself.
  11. Dreambirdie

    Dreambirdie work in progress

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    I'm glad it was so easy to make your day. :cool::cool::Retro smile:

    I too have had crashes as a result of overdoing, and as a result of not listening to my inner voice regarding treatments and supplements and other people's miraculous recovery agendas. I'm very careful at this point to check in with myself and not jump into things out of desperation.

    On the other hand, I'm also not willing to rest my life away. As long as I am alive, I want to spend the energy I do have mostly with people I love, and doing things I love--things that move me and inspire me and give me pleasure. I have gotten really good at saying "NO" to things that drain me, and also quite good at saying "YES," to the good things that make me happy. That makes my down times all the more bearable.

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