Activity baseline vs activity ceiling, why concepts and language matter

This is Graded Exercise.

 

@lunarainbows

Increasing activity is the wrong advice, and increasing by 10% every week is an absolute- no. There is no timeline with ME. You are in charge of what you can and can't do.

 

Are you sure this is graded exercise? Oh my god I feel like crying now. But I’ve been through GET on the PRINCE trial and it wasn’t like this.

 

But I don’t know what I actually can and can’t do. I don’t really know what helps people with severe M.E. I try to rest but am not getting any better as a result of that, and I cannot sit up much at all for years now. It’s getting harder and I am scared, and I don’t know what I could do to make it better.

What sort of increases are ok? How do I know when I can increase? Or if I should even do so.

 

In order to determine a 'baseline' the normally suggested procedure is to only do what is essential for physical survival.

If you can do this then you can gradually add in 'luxuries' like self care, TV, reading, using a washing machine, until you get symptoms.

The point just below where you transition from no symptoms to symptoms, that is your 'baseline'.

This isn't, as the name suggests it is, a fixed thing.

It will vary because there are stresses and necessary activities, temperatures etc. that cannot be controlled. And of course, because you're not a machine.

If you can't get symptom free, due to bare survival activities causing symptoms (most pwME can't), then the concept of a baseline, as 'others' mean it, is meaningless, it being defined as the amount you can do without symptom exacerbation.

While you have symptoms it is probably a bad idea to voluntarily increase activity, apart from at need.

If you haven't eaten, but know the exertion of getting, or even eating, food will cause you problems, you still need to eat.

Real life dictates that people have to play fast and loose with what they do, often requiring people to do things when they know the consequences will be bad, simply to survive another day.

If you are mainly bed bound I would not suggest you take on additional activities simply because someone has told you that it's desirable for longer term health.

Get through today, the next hour or 2, do what's necessary for that.

It's fine to choose to do more, as long as it's your choice, it gets you something you need/want at that moment, and you know the likely price and it seems 'reasonable' to you at that time.

Just don't waste resources you don't have in trying to make other peoples philosophical aims come true.

Start low, as low as you can possibly get, and see if you can get symptom free, if you can't, as I suspect by your being bed bound, then forget about increasing anything for a while.

Somewhat garbled - I'm sorry.

 

Such as myself, I'm still 'mild' and mainly housebound, but life is a lot 'easier' than it used to be.

I have been severe in the past, I lost around 5 stone and nearly starved before I was found and taken in and looked after by someone.

So I have some idea of what being severe is like.

Sometimes things get better, or at least not worse

 

GET is not a recommendation for the severely affected.
The 10% increase is quoted in paediatrics as well and uses NICE as justification. It simply dosn't work like that, and belies a lack of understanding ( its also a bit like flat rate % and APR%- what is the 10% an increment of and when does the 10% stop? Why 10% and not 5%, 2%..... It's a woolly figure plucked from nowehere)

Myhill has good advice whilst caveating to acknowledge that life simply gets in the way - it is to do nothing until your body is happy doing nothing. People do not understand what " nothing " is.

This situation, as described by @lunarainbows and the responses, is important for @PhysiosforME .

 

I don’t have any really helpful advice and as a mild/moderate person I’ve got a bit more to play with than you

I also did GET but at the time I was newly diagnosed and like you thought that doing nothing and then gradually increasing activity seemed sensible. And it was until my symptoms started getting worse (for me hip and knee pain at the time). I still remember the walking to jogging transition.

it was painful. The advice from the therapist at that point ...to get a new pair of trainers and push through was absolutely wrong and after a few weeks it became impossible in any case.

This is the difference between pacing (within your limits) and trying to push beyond.

I also found that it was easy to spend my time walking if I did nothing else (most of my “therapy” was while I was off work on long term sick leave).

But stupidly I continued to “do a walk” and resting for 20 min twice a day in my car (only place I could lie down) as well as working based on this advice. As long as I wasn’t crashing all the time I thought.

That was in 2015/16 when I was able to do 5000 steps a day. Nowadays everything is to the bare minimum and I manage on 2500 steps (max).

I suppose what I’m trying to say is that your ceiling /envelope/stamina threshold may be lower than you think and that what appears as progress is actually a series of small overexertions that eventually come and pay you back. I have certainly noticed an accumulative effect over the week now I’m pacing better. It’s also possible that I’ve deteriorated regardless of anything I’ve done to myself of course...but difficult to tell.

I also find a heart rate monitor/step counter and electronic symptom tracker useful to help pacing. This latter is useful to show symptom build for things like hot weather/pollen count/colds etc which still often come and bit me on the bum.

 

I'm truly sorry that you are going through such difficulties. The ME specialist I saw 28 years ago advised me to do 'nothing'. Listen to your body, you are feeling sick (as you stated) after minor movement, that is your body telling you that you are overexerting yourself.

Slowly increasing activity will put you in a constant state of PEM and will worsen your condition over time.

There is always hope, some of us improve over time.

 

It's all made-up so everyone chooses their own version. That's a key problem: zero consistency. It may as well be about "detoxing" or purging your thetans or whatever for all that it means anything consistent. It's a belief system, people just fill in the blanks with whatever they want.

 

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.

 

Thank you so much Wonko. Don’t be sorry, it’s not garbled at all. what you and others have written is so helpful and is very different from anything I had heard from anyone else before. It made me think last night about all the things I’ve been told by professionals and tried over the past 4 years. What you have written brought me a lot of comfort as well as more understanding. Honestly thank you from the bottom of my heart

 

Thank you Trish. It does help a lot. I think what you and others have written have given me more clarity than I’ve really had over the past 4 years. Like you say, even surviving gives us symptoms. And I think I’ve understood now why it’s been so hard and painful trying to constantly be told to find my baseline when I just can’t find it.

I think I had it drilled into me not to listen to my body, somehow; to the point I’ve got used to trying to ignore my body and symptoms. I won’t do that anymore. (Your point about breaking up internet time is a good one!). Thank you

 

You are right about the 10% figure. At the time I did not question it because somehow it seemed to make sense to me. Stop fluctuations in activity and “boom and bust.” So the physio told me I was basing my activities in response to my symptoms, and I should stop doing that - so that I have a good baseline. And then slowly increasing in increments. it seemed to make sense - except when I actually tried I could see it was putting pressure on me both psychologically and physically and it didn’t seem to work for M.E, and I couldn’t sustain or find stability.

And I thought 10% was based on her observations in working with M.E, and specific to the physio, didn’t realise it was something that others did as well and in paediatrics as well!

 

Thank you @arewenearlythereyet this was very helpful to read.

“I suppose what I’m trying to say is that your ceiling /envelope/stamina threshold may be lower than you think and that what appears as progress is actually a series of small overexertions that eventually come and pay you back.”

I thought about this yesterday and it really clicked in my mind that this is exactly what I had been doing. Same for the walking a few steps as well. I was really happy that I was managing to sit up more due to increasing it in increments. But actually I wasn’t feeling well when doing so, or feeling better in general, because even sitting up for a tiny period of time makes me feel unwell. And the more i was sitting up, the worse I was feeling.. rather than better. it wasn’t “desensitising” me to sitting up - I think maybe the opposite.

Thank you for your wise words.

 

Thank you Mij you are right. About the over exertion and constant PEM. It’s so strange I had not thought of any of this in these terms before. Even though I know I get PEM and am feeling very unwell. You have all helped me more than you may realise and it is a great comfort to read your responses. Thank you for the message of hope too.

 

Thank you @rvallee - this makes sense.

Also it’s made me realise something. All the various things I’ve tried over the years, or heard of - they’re all variations on the same theme, all variations of the NHS / NICE graded exercise programme although they pretend not to be and market themselves as being not like that!

The CFS Health online recovery program, has a whole module about why graded exercise can be bad and how this is the programs for people who haven’t been able to get better elsewhere, but is then based on getting yourself better by getting your baseline, and slowly increasing your activities and exercise and doing stretches, and also changing mindset. It says your symptoms are real but don’t listen to your symptoms. Doesn’t that sound so much like the nhs programme but in a different way?

Or the ANS rewire programme. About “rewiring” your triggers as you increase activity. Or the lightning process - I haven’t tried this particular one past an audio clip, but I think again the same thing, increasing things in a graded way while also thinking about positive experiences and telling yourself certain things.Or the optimum health clinic (by now you’re probably thinking Ok literally what is wrong with you.. but in my defence I really am so desperate to get better and all of their approaches seemed different I was taken in by so many of these people).

Or the BodyMind programme (haven’t tried this one but read their website). Or the curable app, again the same thing, this time increasing activity while not being scared of symptoms and doing gratitude practises etc. Or the PRINCE trial. I even saw an Instagram page the other day of someone “healing from cfs” was talking along the same lines although they may not have even realised it (or they might have done, I don’t know). And so many of the pages on fb or Instagram.

So many of these pretend to be something “new” and “fresh” but they’re really not. And I think that’s why I keep trying new things as I think why haven’t I got better and others have? I know people say testimonials aren’t proof, that is true, but there’s so many of them. And I think maybe the reason for that is because some people do just get better over time, but they attribute it to these programmes or to GET. Not because GET is actually good.

Maybe with some of them - they seem like gentler versions of GET, like only increasing sitting up or only increasing by one step. But from reading people’s responses now I’ve realised it’s the same principle.

 

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!