Chronic Fatigue Syndrome Support Group

Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...

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Percentages

ladybugdreams
ladybugdreams
I don't know why but i have always talked to my Doctors using a percentage as to how I am feeling. My normal everyday percentage is about 35% of what I used to feel. A crash is usually 20-25%. Good days I say are 40 to 50%. I was thinking today about how 50% feels so well to me now & like today, I am satisfied with it. In some ways this makes me sad but in other ways I am glad I have reached this stage in my illness. I remember fighting the the feeling & saying I would never give up, never lay down & roll over. But now that I am here, I don't see it the same, I am still fighting to get better, I am still reading & looking for anything that will make me feel better. I am just at peace with it, a peace I see in allot of you, which is why I like this forum so much. Many Dr's have told me it is their goal to raise my percentages but none have, I guess that is why I have to find some peace with this illness, I can't live angry or obsessed forever. lol!

Anyway, I wanted to know what your percentages are, I kinda got off track alittle. hugs, Denise
Since1981
Since1981
I never thought of it in terms of percentages. I've been ill longer than I was well so, it's hard to remember what being well felt like, but I'll never forget being near zero.

I agree that letting go of negativity (anger, trying to control the uncontrollable, self-pity, etc.) leads to acceptance and peace. Acceptance doesn't mean giving up, but without the stress of "fighting" the disease, I feel better. When I feel better, I can think more clearly and find ways to improve my quality of life, but more importantly, see the many blessings I have rather than what I don't have.

I see I have gotten off track as well; however, I think peace of mind is such an important topic and I'm glad that you brought it up!
DarlaC
DarlaC
In percentages, I actually feel that I have lost SO much of what I was once able to as a healthy person, that I'd rate myself as a 25% on a "good day". I know what you mean by "good day" too. It's 25% of what I USED to do, but now that 25% is my new normal, so I'm ok with it! I'll take it. I too, know what zero is. I get there in crashes and believe me I find no joy in being bedbound and having palpitations and difficulty lifting myself out of the bed!!

SO, I guess I'm saying that my percentage of loss is 75% of the once healthy me. The 25% that I am still blessed to have, I am very grateful for and have learned to accept it as my new normal. Those days are far away from the zero of crash, and I've been down to zero a lot less than I was when I first became ill 8 years ago with CFS.

We never give up! Nope, no we don't!! Hang in!! xo
MaxPB
MaxPB
Found a rating scale at http://www.cfidsselfhelp.org/cfs-fibromyalgia-rating-scale

Based on this I am at about 45-50% on a good day, the average crash will take me down to 20% and I get to 10% in a bad crash.

Looking at it like this just brings home how much we have lost. However, as long as I am able to get out of bed on my own steam and do things like bathe myself and eat unassisted, I'm not complaining too much. Add the ability to work and leave home a few times per week and I'm just grateful every single day.
DarlaC
DarlaC
According tp that scale link you posted, Max. I'm between a 20 and a thirty, which is pretty much what I figured myself to be. OK, a confirmation. OK, I guess we all know what a ten is. UGH....less than that....we don't know how to explain to the general population,, or even our doctors sometimes.

Hope we all see a lot of higher numbers on our ratings scale as this year goes by. We never know, someone may just stumble across an answer for us. I just KNOW there is one. I do. I know. I'm always praying for all of us!!
ladybugdreams
ladybugdreams
Thank you Max for the rating scale. According to this I am never at 50%. I am usually between a 20 & 30% for my normal & 40% on a good day which is seldom going by the chart.. Low is 10%.

Darla, I am sorry you get to a 0, I haven't been there since I first got sick about 8 years ago. It is an awful place to be. Hugs, Denise
Nina1959
Nina1959
Yes, thanks Max! I'm printing that out to take to the doc with me. Love the info we get from this group!

I'm right about at 30% midline on average, 20 on some bad weeks, 40 on days I push it (to be followed by a guaranteed 10 the next few days).

I'm actually crying right now because I hadn't realized just how bad I was at this point. (don't worry, I'll be fine) I think you get so used to what life is like with CFIDS that "normal" is unrecognizable and you start to think of a good day as 100%. While it's shocking to re-understand how bad it's become, it's also reaffirming in a way because sometimes even I feel like I'm just being lazy. I think we are more critical of ourselves than others are, most of the time. y'know?
loveandlighttoyou
loveandlighttoyou
Thanks for starting this thread Denise. And thanks for the scale Max. I had never seen one like this.
According to this scale, I'm mostly at a 10. Dipping down to a zero quite a bit. Can go up in the 20's sometimes for self care but leaving the house is too hard. I had to buy a wheelchair for going to the Dr. but find it hard to hold myself up in one most of the time.
I use my smart phone for most things including being on DS. I often say it's my lifeline to the outside world. :)
My loss of function is certainly challenging but it's breeding lots of mental, emotional and spiritual growth. Debilitating illness continues to teach me invaluable lessons I may have otherwise never learned. I may be physically weak but my spirit keeps getting stronger.

Hugs to all...
aussiedi
aussiedi
Reading that scale freaked me out a bit.My best is a 30 percent and quite regularly dropping to a zero, where I can't move off the bed and feel like I'm dying from weakness.I still cannot cope with this level of fatigue when it happens, and I still struggle with my emotions.It is like being trapped in an almost dead body, with no control.I just can't accept it, and hate it so much.I continue to try new treatments and do a lot of praying.I don't know how I ever survived before DS.I am eternally grateful to you all.You are my rope of strength and hope.
2DanceAgain
2DanceAgain
I have to say recently I am at about a 33% during a good week using the scale at the site that MaxPB posted.
http://www.cfidsselfhelp.org/cfs-fi...
A year ago I could make 40%. It is interesting to look at the scale. I would have put myself at a higher percentage before reading it. I am still grieving the loss of 60% of my life and I have dealt with CFS for 10 years.
isabelle1954
isabelle1954
I am on a 25% stretch this week , but I know people who are 0 and it makes me so grateful!! Isabelle1954
deleted_user
deleted_user
I found that chart helpful and illuminating. I realized that about two months ago, when I that I was almost back to old self, I was really only a 40-50. Because I didn't realize my actual level (after being a 20-30) for a few years, and a 10 at one point, 40-50 felt "normal". And this is why I just can out of a 20 level relapse. I over did it, not realizing how precarious a place I was in. This thinking in percentages is very helpful for a logical mind like mine. I was wondering about wearing a hear monitor to help me guage my activity level, since I am obviously very terrible at guaging myself. Has any one used a heart monitor to better understand their personal limits? (I am only a week into my diagnosis and trying to learn a lot about how to manage this)
tiredbunni
tiredbunni
I have seen this before but I haven't reassess my percentages. On a good day it is 20% and bad day well close to 0. I struggle so hard to stay awake but I am sleeping most of the time. Therefore, I not getting enough to drink or eat as I know I'm getting weaker. I try but I'm alone so as soon as I realize, I do eat and drink water.

I'm in a wheelchair/scooter outside the house have been for years now. But thankful that I can get around in my home (own environment) without it. I try to stay on computer to stay active (awake) but it's not working. I'm grateful for DS when on it but I don't want to be focused on illness all the time. Doing my best to live in the moment but realize the stress of losing my mom is taking a toll. It will pass. Many hugs to all of you :)