If we aim too low physically we loose condition, muscles and bone.
So where is the happy medium?
I suspect we have a line we must not cross above, because doing so causes harm.
It's like a glass ceiling.
It's like a glass ceiling.
We can stroke this ceiling gently if we are careful, and it will wobble down for a bit as PEM - but break it and it will shatter and reform at a permanently lower level....
So how do we avoid crossing this glass ceiling during life's surprises - like when we get a virus, or an unforeseen extra activity or stressor?
I've been told to use the 60% rule, .... ie Stay 40% below the glass ceiling. The principle being to always leave a little in reserve.
Yet how do we find WHERE that glass ceiling is if we are aiming to never touch it? And crossing it risks permanent loss (as has been my case several times to date).
I get a few warning signs as I approach my glass ceiling so I can back off. They can be tiny signs at the time. Things in the past I would have ignored!
Yet I find, I MUST keep backing off as that is the only way to stay well for me.
Not backing off quickly enough after a glass ceiling incident has, in the past, meant I quickly broke the new lowered ceiling and so had a double whammy down down ..... which is scary scary!
It might look like this on a graph:
Not backing off quickly enough after a glass ceiling incident has, in the past, meant I quickly broke the new lowered ceiling and so had a double whammy down down ..... which is scary scary!
It might look like this on a graph:
Click on image to see a bigger version
Personally, I've been ill 28 months now, and only recently have I managed to achieve an 8 month period without further decline.
It has been suggested there are two types of ME patient...
- those who are most likely to over do things, and
- those who are at risk of doing too little? (Really?)
I know psychiatrists like to think we are all the second type.
I suspect however that most ME folk are the first type.
We ALL want to do MORE, so we are more likely to be at risk of "over-doing" than "under-doing".
Exercise programmes that advocate any "increase" are therefore dangerous, because early "successes" are simply using up our safety net and causing us to sail much too close to our personal glass ceilings.
Then it only takes something little, to send us hurtling into the glass and smashing it and lowering it permanently. This is why Graded Exercise Therapy is so harmful.
This is why we need to budget so carefully, CHOOSING what to spend our energies on, but not trying to force our broken metabolic systems to spend more energy than our current energy income allows.
The glass ceiling will move up only when it is good and ready, but trying to force it up is a risky business....
Does this make sense to you? What do you think?
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Related posts:
Why NOT Exercise?
Pacing for ME and Using a Fitbit
A few Notes on using a Heart Rate monitor for Pacing
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Related posts:
Why NOT Exercise?
Pacing for ME and Using a Fitbit
A few Notes on using a Heart Rate monitor for Pacing
Great post and thought provoking. I love your glass ceiling analogy and also agree it's a fine line, a very personal fine line... which makes it even harder to define! LOL
ReplyDeleteIndeed personal, and variable, and dependent on so many factors. The deck is stacked against us.... but against all the odds we still try to hold on to our lives as best we can. xx
DeleteGood analogy. I think you're right. I'm afraid I have to cut it much closer than 40%, though, because 40% below my ceiling would be bedridden. Just managing activities of daily living, such as bathing and preparing and eating meals, puts me close to the limit.
ReplyDeleteI'm not sure that loss of function that comes from breaking the ceiling is truly permanent, though. With very careful pacing and perhaps some luck, I think it's possible to very, very slowly regain at least some of what was lost. I've known of people who have been ill for more than 10 years who have made improvements in their level of functioning.
One of the problems with keeping below that ceiling (and one reason your 40% rule is sensible) is that it's not a static point. The ceiling moves, so that what wouldn't crack the ceiling one day, next week might. There are so many variables that affect our energy levels: things like weather, germs our immune system might be fighting off, sensory overload, allergies and sensitivities, etc., etc.
Yes agree! Especially with the sticking to 40% below, I too tend to operate much closer to my limits... it is easy to pass on advice I've been given, much harder to follow it for myself!!
DeleteMy own experience to date (which I know is short) is that every time I loose anything, and the loss lasts more than just a week, I have not been able to retrieve it.
I also understand that sometimes we can have recovery, but I don't think that is ever likely to come from pushing for recovery.
Thank you for sharing your thoughts. It is good to have hope for the future. I just need to be patient.....
Another complicating factor is that the 'glass ceiling' changes, and the amount of energy available one day that can be safely used without causing symptoms worsening (PENE, PEM, PEF...) is not the same the next day. We could have more, or less. So it's not only invisible, it's moving too.
ReplyDeleteAs you said, we need to learn all our indicators that we are approaching the 'glass ceiling' and rest before hand. But often that doesn't work for me. I think I've not done too much, have rested enough in between activities......... but the next day am sicker.
That why I love the heart rate monitor to help me self-monitor. HR at the present time - go lie down immediately if I go over my ceiling heart rate. Also recovery time - how quickly is my HR returning to a lower level. If taking awhile, do less. And also morning heart rate and average heartrate. If they are high, again know the 'glass ceiling' has lowered and 'do' accordingly.
I also have more in my bag of tricks. Always chunk activities into small segments and rest in between. I've relearned how to move, using much less energy. I do my anti-deconditioning exercises a few seconds at a time throughout the day and do them lying down as it takes much much less energy. I stay hydrated, sipping water or homemade electrolyte drinks throughout the day, and especially before and after any activitiy............
Great advice Leela! Nothing is simple even though we try to find ways to understand and perhaps even control our symptoms, we can still be thrown by little unexpected things.
DeleteThe advice "do less" sounds so simple, but is in reality complicated and involves compromise.
Yes, makes sense :)
ReplyDelete:D
DeleteI think that really breaking that glass ceiling does not allow remission to the level before that, thinking of some friends who have described their history with this disease. I love the graph, especially as the relationship between the red and blue lines is causal.
ReplyDeleteSome of the folks who have followed Dr Klimas idea of very mild and slow movements, watching heart rate, can very gradually increase physical function, gives me hope, and I am glad to see a few patients who described their improvements (not cure) for us all to read. Hope, but no success for me yet.
Indeed the slow movement thing is good because it doesn't push above the glass ceiling idea.
DeleteSo hopefully then some recovery might happen. I don't see this as an individual "gradually increasing" but rather as the illness releasing its hold first. No-one should I believe start with the intent to aim for increase.
Sadly unforeseen things like a virus can also do damage. I don't have an answer for that. We need answers.
Have you checked out the programs offered by
ReplyDeletehttp://www.cfidsselfhelp.org/
Some very helpful insights self-help information.
Indeed. Some nice free articles there as well as their paid programme. I found this article very useful:
Deletehttp://www.cfidsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope
Thanks for this, a very informative & understandable piece.
ReplyDeleteFor FM folk the 60% rule is good as well. Fatigue and PEM are also, for some of us, a constant juggling act and if the line or glass ceiling is crossed or broken then we can very soon find ourselves in a major flare.
My problem is finding a way to pace, I get so frustrated thinking I should be able to do things, then overdo it and end up in bed for a day or two.
It's easier to write about how to avoid flares/crashes than it is to avoid them!!
DeleteReal life is difficult to control... and FM seems to be as unforgiving of errors as ME. No easy answers for any of us yet. xx
Thank you, Sally.
ReplyDeleteI get concerned when people recommend increased exercise to others.
You have outlined the issues beautifully.
Thank you Penelope. Just need to listen more carefully to my own advice now. ;)
Deletethanks so much for starting this discussion Sally it is so relevant for me just now. Love the graph and the wisdom. At times it can be soooo frustrating to have to pace and pull back on exertion, doing less seems so counterintuitive, but necessary.
ReplyDeleteyou have generated a super thread here!!
Indeed Ana - resting when instinct says "push on anyway" is the very hardest lesson of all.
DeleteI've had this disease for 28 years and I still don't know exactly how much I can do. I had an appointment yesterday, took a cab to get there, stopped at a library and the post office, then took a bus uptown, seated all the way -- 14 blocks. Walked around, went to a jewelry store, chatted with the owner, then felt myself crashing. I thought, "Oh, no, I have to get groceries," and I rushed out to the store, rushed through it and rushed home.
ReplyDeleteI was out for exactly 3 hours and 21 minutes. Left at 1:40 p.m., felt myself crashing at 4:20 p.m. (only 2 hours and 40 minutes later) and got inside the house at 5:01 p.m. Had been on my feet more than usual. The muscle pain in my legs has been awful ever since and I couldn't go out today. So I still don't know.
And as far as exercise, it varies. Some days I can do up to 12 leg lifts. Some days, like yesterday, I could only do one. Today I could do 3. It has to do with overall stamina. It's not a straight line going up. it zigs and zags, depending on what other energy is used.
I always go back to the gas in a car analogy. We get 10 gallons a week; that's it. If it's used up, that's it. Takes rest to start up again, sometimes for 3 days, sometimes longer.
There is some work done now by Dr VanNess etc. who say that slowing up and breaking each activity into smaller chunks can allow us to do more than pushing on during one session. It's all to do with keeping Heart Rate low.
DeletePerhaps consider getting groceries delivered?
I agree that the ceiling effect is altered by what went previously. I think every time you challenge it, even mildly, it dips downwards. Yet keeping back from it - as far as life allows - means it doesn't dip down so often in those zigs and zags you mention.
The car analogy is good. Thanks for your comments.