Activity baseline vs activity ceiling, why concepts and language matter

[lunarainbows]

Dear @lunarainbows, I'm sorry that I was so terse, and very sorry that I upset you. I've been following your threads with interest, but not really been up to commenting - family holiday!

The trouble with how physiotherapists in NHS ME centres and also some of the private ones is that, as @rvallee says, there isn't any consistency as to which GE version they use. Not that it matters anyway - any form of Graded Exercise is likely to cause harm, even to "mild" patients. To someone like yourself I don't believe it will be helpful, despite what med professionals may tell you.

I really feel for you in the bind you find yourself in. Try enjoy what you are able to do, and don't force yourself to push for more. On bad days I get a lot of fun from watching the birds on our feeders and splashing in the bird bath.

I am lucky in that I don't have to lie in a darkened room, I am aware that some people who are severely affected are not able to enjoy watching the outside the way I can.

Am all typed out for now, but just want to let you know that I'll be thinking of you, and send you some more hugs.

Oh no please don’t worry! I was not upset because of you. I got upset that I had been somehow once again caught up in Graded exercise - even though that’s what made me so ill when I did it a few years ago. I just didn’t realise this was graded exercise because it seemed so slow and “at my pace”.

In a way I wonder if it’s my fault because when the physio came, I was saying how desperate I was to sit up and walk; because everyone else can do it. Maybe if I didn’t say that, she might not have told me to do it that way? But then again having read everyone’s replies it seems that the baseline + increasing seems to be a general GET ideology so it does worry me that I was told to do this.

Maybe, I am not sure, they do not think of it as GET because she was still telling me to rest a lot (even though it is). It is not a NHS centre that I went to, it’s a charity, who are involved very much with helping the M.E community, and are well known by quite a famous person with M.E, which is what is making me feel very confused about it.

Aaw thank you for being so kind and for the hugs I struggle a lot with light so I can only use my phone with dark glasses + dimmest setting and have the curtains down. I used to love birdsong at the place I used to live, but nowadays if I open the windows all I hear is cars revving past so cannot even open windows (I’m on a main A-road )

Thank you for being so lovely xxx

 

[lunarainbows]

I truly feel for you, but ME is different from all other illnesses. We are told that we have to fight, do this, do that, but ME only gets better when you STOP. This is the rest of your life to sort and it will not be a quick process but it is possible to improve. Forget about baselines and increasing exercise, just do what you feel you can at any moment - sort of mindfulness

Dr Speight has said he had good results with his teenage patients when he managed to get them out of the system so no one pushed them anymore. (Our problem is we push ourselves!) When you feel a bit better you will do more, you won't have to work at it.

The Workwell Institute may not have all the answers but their advice is helpful. Check out youtube for Mark Van Ness. They talk about keeping below your anaerobic threshold, where you move into the body's emergency energy state. It is only designed to be used for a short period of time but we end up using it to live. Staying gently below this point keeps us from payback.

Unfortunately, this AT varies so it is not the complete answer, but it helps. That is one reason why a heart rate monitor can be a useful aid.

If you feel bad or your heart rate goes up when you get into bed, say, do it in small steps - lie on the bed, wait a few minutes, pull over covers, wait get settled. Don't struggle to finish a job stop and rest at once then go back to it.. if you think you won't manage something listen to your body and don't do it. Sleep when you must, rest when you must. If you want to do something and feel you can, go for it.

ME is so variable that no doctor can lay down a schedule, following your body at the time is the thing.

I can't say I've cracked it even after 50 years but this is what improved my life a bit. It started with doing a few steps every day, not a walk, just to the kitchen with a cup once a day, then after months I was able to reach a garden seat by the back door which was wonderful.

Sadly there is no way to know who will improve and who will not but I have never heard of anyone get worse by resting too much. We all want to have some life so forgive yourself if you do too much and feel bad the next day. Like they say about a healthy diet, it is a way of life! Hopefully you will improve enough to enjoy some quality of life - but if it does not improve as much as you would like it is not your fault!

Thank you for the really good advice. I wish I had heard all of this 4 years ago and was able to get your advice then!

I think I may struggle with monitoring my heart because I have an inappropriate sinus tachycardia which means my HR is all over the place even if im actually resting or do the smallest thing or get slightly anxious. I do have a HR monitor but found it caused more anxiety than help! I will have a look at the workwell foundation.

And not feeling at fault is an important point. I needed to hear that because it’s very easy to feel like that and I do feel that way a lot.
Thank you

 

[ladycatlover]

In a way I wonder if it’s my fault because when the physio came, I was saying how desperate I was to sit up and walk; because everyone else can do it.

My bold

It's not your fault!

I'm sure that once @PhysiosforME get their teeth into things there will be better help for the severely affected.

I hate to hear you are shut up in a room close to a busy road - even with windows closed that must be intrusive. Also it must be incredibly difficult to be so light intolerant. Have some more hugs.

Best wishes from Bwlchtocyn. (on holiday in caravan)

 

[adambeyoncelowe]

Oh no please don’t worry! I was not upset because of you. I got upset that I had been somehow once again caught up in Graded exercise - even though that’s what made me so ill when I did it a few years ago. I just didn’t realise this was graded exercise because it seemed so slow and “at my pace”.

In a way I wonder if it’s my fault because when the physio came, I was saying how desperate I was to sit up and walk; because everyone else can do it. Maybe if I didn’t say that, she might not have told me to do it that way? But then again having read everyone’s replies it seems that the baseline + increasing seems to be a general GET ideology so it does worry me that I was told to do this.

Maybe, I am not sure, they do not think of it as GET because she was still telling me to rest a lot (even though it is). It is not a NHS centre that I went to, it’s a charity, who are involved very much with helping the M.E community, and are well known by quite a famous person with M.E, which is what is making me feel very confused about it.

Aaw thank you for being so kind and for the hugs I struggle a lot with light so I can only use my phone with dark glasses + dimmest setting and have the curtains down. I used to love birdsong at the place I used to live, but nowadays if I open the windows all I hear is cars revving past so cannot even open windows (I’m on a main A-road )

Thank you for being so lovely xxx

Was it the ME Trust, by any chance? They deal with severe patients and worked with Jessica B (The Girl Behind Dark Glasses).

It's possible, as you say, that the physio doesn't see it as GET. Maybe discuss it with them? If the exercises are making you worse and you can't find a baseline, tell them. They might lay off that approach and your honesty might stop them doing the same with someone else.

 

[ProudActivist]

This is such a useful thread. I think so many of us have had GET without actually realising it at the time. I had it via group sessions on the NHS before the PACE trial was even finished (they were so sure of the results they were already rolling out the therapies!). I was dubious and had reservations but did it anyway because I was desperate and scared and unsupported medically as we all are. It’s very hard to say no or even doubt them when professionals are individually kind and genuinely want to help you. They believe it’s right. You go along in case it’s useful in some way.

The difference was that I was only moderately affected. I seemed to increase my activity but really I was just overdoing it and doing less in other areas and also getting more symptoms. It made me worse. It’s definitely not suitable for anyone severe or very severe. Just the mental strain of categorising my activities and charting it all was confusing and exhausting and meaningless. The fact that they didn’t allow me to put that admin in the activities said a lot!

As to how you improve your ability to sit up, I don’t know. I feel my muscles are getting weaker but there’s little i can do about it. I try to tense my core muscles and others when in bed and I feel able. I test out anything new by waiting until the third day to repeat, to allow any post exertion effects to work through. Then, if I am feeling ok and nothing else is using my energy, I can do it again.

Beyond drugs for POTS if that’s a factor, and keeping blood pressure up if it’s low by hydration etc you can only work within your symptoms and limits and see what happens. Determination is obviously not lacking. This isn’t your fault. We shouldn’t be left like this having to suss out those who are supposed to be supporting us.

Are you adult @lunarainbows ?
It can be risky to reject GET but it sounds like it’s not NHS so hopefully ok. I hope you can get them to work with you in a different way.

 

[Mithriel]

If I've got it right, the way we produce energy goes like this.

The anaerobic reaction produces pyruvate and when enough accumulates the lactic acid cycle begins which uses oxygen and produces lots of ATP if you are healthy. The anaerobic reaction carries on in the background producing pyruvate to get everything going and some ATP.

We have a block somewhere which means the lactic acid cycle doesn't go properly. People have described this much better than me.

Anyway, the thing is that if we exert for less than 2 minutes, or 1 to be on the safe side we might be able to stop any damage being done. All this may be wrong, but it gives me something to try which seems to help.

Workwell tells people to break up what they do into small pieces. So sitting up in bed might by being held upright for 15 seconds then rest for an hour before trying again might help your muscles strengthen without making the ME worse.

Doing more "exercise" like that for ourselves is not the same as the increase of activity the clinics encourage.

 

[DokaGirl]

Re the term "energy envelope", which is a good term, but I find confusing - I like energy budget. It is something understandable as limited, and needs replenishing in a timely manner.

 

[Keela Too]

I really do like the energy ceiling idea - and the budget one too. As for a baseline - well as others have said that implies that a baseline is somewhere to start to increase from. And there is no certainty that we can alter our own well-being by our decisions to do so!

I think one’s energy ceiling is roughly consistent (bar Post Exertional changes) until something alters it.

When I was more ill, every tiny little bit extra I did caused a ratcheting down of my ceiling. It was a slippery slope, and during that time I had to pull right back. I probably had fewer symptoms then than I have now, because if I had any symptoms at all it caused a lowering of my ceiling. So I did less and less. But I couldn’t prevent symptoms, so I was on a downward slide. I won’t deny it was scary, but I was still walking to the bathroom myself.

When I had an increase in my ceiling (I attribute that to a drug), I KNEW it, and was able to test it easily if carefully. That ceiling went up dramatically over a short period. Then I hit a new ceiling. This new ceiling is not so sensitive to me experiencing symptoms, so in truth I can take a few more risks in real time. So I have a few more symptoms now! I am still careful however - and that might make me seem whimpish to my healthy & robust wider family circle. Luckily they take my word for the fact that pushing on would cause me damage.

When i was well, I could push myself much harder than I dare to do now. There was no risk then. I’d get tired after being busy, but I could sleep it off, or take a few quiet days and the busy period would have no lasting effect. No so now. I build rest times into each day, and rest days into each week. I must be careful if I am to preserve what I have now. Such is life.

To me anything that suggests we should “increase” is GET, and is not pacing.

Anything that says we should find our ceiling, budget, or envelope, and stay firmly within it until such times as our health changes - well THAT is pacing. Pacing does not presume that resting will make us better.

Pacing is, to me, strategically keeping within what our bodies can tolerate so that we don’t worsen our condition by over stretching our abilities.

Edit to add: I mean who would ever suggest that a person on a low income should try to increase their personal spending, because that will increase their income? Nope budgeting is about staying within budget, and avoiding high interest rates from over spends. You certainly wouldn’t suggest some-one on a low income should increase their spending rate by 10% a month no matter how many warnings the bank sent!

 

[lansbergen]

Pacing is, to me, strategically keeping within what our bodies can tolerate so that we don’t worsen our condition by over stretching our abilities.

I agree.

 

[lunarainbows]

This is such a useful thread. I think so many of us have had GET without actually realising it at the time. I had it via group sessions on the NHS before the PACE trial was even finished (they were so sure of the results they were already rolling out the therapies!). I was dubious and had reservations but did it anyway because I was desperate and scared and unsupported medically as we all are. It’s very hard to say no or even doubt them when professionals are individually kind and genuinely want to help you. They believe it’s right. You go along in case it’s useful in some way.

The difference was that I was only moderately affected. I seemed to increase my activity but really I was just overdoing it and doing less in other areas and also getting more symptoms. It made me worse. It’s definitely not suitable for anyone severe or very severe. Just the mental strain of categorising my activities and charting it all was confusing and exhausting and meaningless. The fact that they didn’t allow me to put that admin in the activities said a lot!

As to how you improve your ability to sit up, I don’t know. I feel my muscles are getting weaker but there’s little i can do about it. I try to tense my core muscles and others when in bed and I feel able. I test out anything new by waiting until the third day to repeat, to allow any post exertion effects to work through. Then, if I am feeling ok and nothing else is using my energy, I can do it again.

Beyond drugs for POTS if that’s a factor, and keeping blood pressure up if it’s low by hydration etc you can only work within your symptoms and limits and see what happens. Determination is obviously not lacking. This isn’t your fault. We shouldn’t be left like this having to suss out those who are supposed to be supporting us.

Are you adult @lunarainbows ?
It can be risky to reject GET but it sounds like it’s not NHS so hopefully ok. I hope you can get them to work with you in a different way.

Thank you for your reply exactly what you said - they believe they’re right, and you go along just in case it somehow helps you. That’s been the story of my life with all the various things I’ve tried since I got ill 4 years ago. Thank you for sharing your experiences too.

I’ve tried to maintain some core muscle stretching, although at the moment I can’t really do much. I am currently trying to get help from someone to help me on what movements I can do / are safe to do.

It’s the thing I keep saying, I desperately want to sit up. And I’ve tried so many things in order to get that to happen, trying to “trick” myself via lightning process, CBT, graded exercise, gradually increasing. But it all makes me feel unwell.I feel so hopeless and so sad because of this. But reading this thread has made me realise it’s not my fault. It’s not my fault that my illness hasn’t let me sit up.

I don’t believe it is purely PoTS either. As I cannot sit up for longer than a few seconds, and my HR is not so bad that it should cause that kind of response. I do know some people who have PoTS but not severe M.E, and their symptom profile is very different from mine. I’ve also tried a PoTS medication and it made me more dizzy unfortunately

Yes I am an adult! I will be speaking to people I am working with about it & be careful not to do GET.

 

[ProudActivist]

Yes exactly, it’s absolutely not your fault. Unfortunately the medical narrative is patient blaming and it’s insidious. It gets inside our own heads and wastes so much of our energy as well as leaving us vulnerable to harm.

At least they can try to manage POTS. When it’s purely ME related weakness it is much harder to know what to do, and perhaps there is very little to be done except take care of yourself as best you can and rest. Good luck with the little stretches, I hope you can feel some benefit, even just in pain relief if not obvious strengthening. I hope you can find moments of joy despite how hard things are and give yourself credit for how well you do in such difficult circumstances rather than feeling a failure for being so unwell or unable to sit up.

 

[lunarainbows]

If I've got it right, the way we produce energy goes like this.

The anaerobic reaction produces pyruvate and when enough accumulates the lactic acid cycle begins which uses oxygen and produces lots of ATP if you are healthy. The anaerobic reaction carries on in the background producing pyruvate to get everything going and some ATP.

We have a block somewhere which means the lactic acid cycle doesn't go properly. People have described this much better than me.

Anyway, the thing is that if we exert for less than 2 minutes, or 1 to be on the safe side we might be able to stop any damage being done. All this may be wrong, but it gives me something to try which seems to help.

Workwell tells people to break up what they do into small pieces. So sitting up in bed might by being held upright for 15 seconds then rest for an hour before trying again might help your muscles strengthen without making the ME worse.

Doing more "exercise" like that for ourselves is not the same as the increase of activity the clinics encourage.

Thank you. This is useful information.

 

[lunarainbows]

I really do like the energy ceiling idea - and the budget one too. As for a baseline - well as others have said that implies that a baseline is somewhere to start to increase from. And there is no certainty that we can alter our own well-being by our decisions to do so!

I think one’s energy ceiling is roughly consistent (bar Post Exertional changes) until something alters it.

When I was more ill, every tiny little bit extra I did caused a ratcheting down of my ceiling. It was a slippery slope, and during that time I had to pull right back. I probably had fewer symptoms then than I have now, because if I had any symptoms at all it caused a lowering of my ceiling. So I did less and less. But I couldn’t prevent symptoms, so I was on a downward slide. I won’t deny it was scary, but I was still walking to the bathroom myself.

When I had an increase in my ceiling (I attribute that to a drug), I KNEW it, and was able to test it easily if carefully. That ceiling went up dramatically over a short period. Then I hit a new ceiling. This new ceiling is not so sensitive to me experiencing symptoms, so in truth I can take a few more risks in real time. So I have a few more symptoms now! I am still careful however - and that might make me seem whimpish to my healthy & robust wider family circle. Luckily they take my word for the fact that pushing on would cause me damage.

When i was well, I could push myself much harder than I dare to do now. There was no risk then. I’d get tired after being busy, but I could sleep it off, or take a few quiet days and the busy period would have no lasting effect. No so now. I build rest times into each day, and rest days into each week. I must be careful if I am to preserve what I have now. Such is life.

To me anything that suggests we should “increase” is GET, and is not pacing.

Anything that says we should find our ceiling, budget, or envelope, and stay firmly within it until such times as our health changes - well THAT is pacing. Pacing does not presume that resting will make us better.

Pacing is, to me, strategically keeping within what our bodies can tolerate so that we don’t worsen our condition by over stretching our abilities.

Edit to add: I mean who would ever suggest that a person on a low income should try to increase their personal spending, because that will increase their income? Nope budgeting is about staying within budget, and avoiding high interest rates from over spends. You certainly wouldn’t suggest some-one on a low income should increase their spending rate by 10% a month no matter how many warnings the bank sent!

Hi @Keela Too. I wanted to say thank you for posting. This means a lot to me. I think I’ve definitely understood what pacing and baselines and GET is now. As well as when the ceiling naturally gets higher. Especially from this bit:

To me anything that suggests we should “increase” is GET, and is not pacing.

Anything that says we should find our ceiling, budget, or envelope, and stay firmly within it until such times as our health changes - well THAT is pacing. Pacing does not presume that resting will make us better.

Pacing is, to me, strategically keeping within what our bodies can tolerate so that we don’t worsen our condition by over stretching our abilities.

This makes so much sense to me and it occurs to me that pretty much everything I’ve done up till now has always been a variation of GET. I never thought of finding the amount I can tolerate and keeping to it. At least going forward I can do that now. Again thank you, everyone’s responses on this thread have been so immeasurably helpful.