taniaaust1
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Here are several PROMIS questions: In the past 7 days what was the level of your fatigue on most days? In the past 7 days how much mental energy did you have on average? In the past 7 days how often did you run out of energy? In the past 7 days how often did you experience extreme exhaustion?
Working out how sick someone is by such questions is so so deceptive as all it may be testing is just how well someone is able to control their symptoms by pacing.
In a seven day period, if I pace very well... I could often say I felt no fatigue at all!!. I pace in a way in which I limit activities to the point of being able to stop most of my ME/CFS symptoms from even happening. (when they do start happening, they can flare up so darn fast and severely.. so I feel safer living life in a way in which I dont have them flaring).
Im hoping that over much time, I can gain another remission like I did years ago by trying to always avoid doing things which bring on symptoms.
I dont even know how to guarge how much I have.. as once again I try to stay below my symptom flaring limit.In the past 7 days how much mental energy did you have on average?
In the past 7 days how often did you run out of energy?
I actually dont at all know. My memory isnt even good enough to remember 24 hr periods well.. let alone a 7 day period. I wouldnt be able to answer these questions unless I'd before hand kept a 7 day diary of my symptoms etc.
Without keeping a diary of my symptoms to refer too.. I'd guage my illness much better (as I like to think positively and I forget negative stuff) then what it is.
In the past 7 days how often did you experience extreme exhaustion?
Now with this question .. my answer may be very deceptive due to my past experiences of my illness and what I see as "extreme" may not be at all what another who hasnt experienced this illness so badly, may veiw as extreme.
For me.. extreme exhaustion is when Im completely bedridden to the point where I arent even drinking or eatting well as I feel too exhausted to even do life sustaining things so are in bed feeling very hungry or thirsty but too exhausted to do anything about it..
Extreme exhaustion is when Im to the point where I may piss myself rather then try to walk to a loo. So right now.. I'd say no.. I havent had extreme exhaustion in the past 7 days.
I did have a post exertional episode (the day after shopping) in the past 7 days in which I had to go to bed while I was trying to have a short visit to someone, so had to be rude as ask them if I could sleep somewhere and hence then did.. falling asleep on their couch 10mins later.
But I didnt see that episode as "exhaustion" as I was suddenly intensely sleeply tired to the point I was constantly yawning, eyes suddenly so tired I had tears running down face, 2hrs visiting, 4pm and I HAD to go to sleep.. I wasnt thou physically tired thou and for me with exhaustion means that Im physically tired too. Would you call an episode in which you arent physically tired at all.. exhaustion?
I dont even know if I was mentally tired.. all I know is I was suddenly so sleepy tired that I was falling asleep.
So questions like the above and judging people on set questions like that.. will all depend on how they PERCIEVE their symptoms.
Irronically I can appear so great with those questions when Im in reality not doing hardly anything at all (only dressing and showering twice a week, only leaving the house to shop and go to appointments as Im not well enough to visit anyone without issues occuring, unable to do my own housework sa it brings in my POTS and if doing it consistantly.. makes my ME worst, so others have to do it for me).
The above questions.. one can not tell the how life affected a person is being by their illness as it doesnt give an idea to the persons actual capability to consistantly do anything.
These questions pose a strong risk of being misunderstood to the point one could be told one is healthy.