Bob
Senior Member
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- England (south coast)
Interesting discussion.
Pacing really works for me. It's the only thing that's ever worked for me, although it's a very slow process to see the benefits.
With pacing, first of all, it stops me from suffering from constant relapses, and then after a while it leads to my symptoms starting to stabilise, and then after I've experienced some stability, my symptoms start to improve very gradually, as long as I don't experience a bad set-back.
It has made a major difference to my life, and it massively improves the quality of my life.
Since I discovered pacing, I've adapted into a form of pacing that I like to call 'intensive resting'. (The name's a bit tongue-in-cheek.
)
Perhaps it's the same as 'extreme pacing'.
Basically, it's a very cautious form of pacing.
I'd never heard of ART (aggressive rest therapy) before now.
Unlike ART, my version of 'intensive resting' doesn't mean being stuck to a bed or sofa, but it means doing much less than I'd like to. It means that, as long as my symptoms are unstable or causing me trouble, I stay at home as much as possible. I allow myself to do normal low-energy home activities, as long as I feel well enough, including using a computer for long periods of time. But it's very flexible, adaptable and realistic. If I need to do a lot on one day, it's usually safe to do so, as long as it's just one occasion.
Before I started to do this, my symptoms were wildly unstable, fluctuating severely, always sending me spiralling into long-lasting severe crashes.
With my form of pacing, I try to get out once every day, as long as I feel well enough (as long it's fairly comfortable for me) for at least one short walk.
I believe that one outing a day keeps me connected to the outside world, keeps me in the world of the living, gives me a daily aim, and stops my fitness deteriorating. Well, I just find it generally healthy to get out once a day, even if it's only to the local corner shop.
When I start to improve, then I start to increase my ambitions.
This approach to managing symptoms seems to work for me.
I've never understood the percentage rules for pacing: I don't find them intuitive or helpful.
Probably because I don't monitor my 'energy' levels. I monitor my levels of symptoms. So the percentage rules don't mean anything to me. When my body or brain starts feeling fatigued or painful, then I slow down, or stop.
I think that many clinicians advocate a 50% rule, and say that 70% is too high.
I'm more comfortable with a 50% rule than a 70% rule, because it just means do half as much as you think you can.
And many say always do less than 50% - the more caution the better.
But it's just a guide, and I think people must learn what works for them.
That's how I play it... All activities have got to feel fairly comfortable... Once I start getting tired or experiencing pain, then I stop.
I like to live my life with the most minimal symptoms because this massively improves my quality of life, but this means less activity. Whereas, it suits others to do more activity but with the unwelcome payback of increased symptoms.
Pacing really works for me. It's the only thing that's ever worked for me, although it's a very slow process to see the benefits.
With pacing, first of all, it stops me from suffering from constant relapses, and then after a while it leads to my symptoms starting to stabilise, and then after I've experienced some stability, my symptoms start to improve very gradually, as long as I don't experience a bad set-back.
It has made a major difference to my life, and it massively improves the quality of my life.
Since I discovered pacing, I've adapted into a form of pacing that I like to call 'intensive resting'. (The name's a bit tongue-in-cheek.
)Perhaps it's the same as 'extreme pacing'.
Basically, it's a very cautious form of pacing.
I'd never heard of ART (aggressive rest therapy) before now.
Unlike ART, my version of 'intensive resting' doesn't mean being stuck to a bed or sofa, but it means doing much less than I'd like to. It means that, as long as my symptoms are unstable or causing me trouble, I stay at home as much as possible. I allow myself to do normal low-energy home activities, as long as I feel well enough, including using a computer for long periods of time. But it's very flexible, adaptable and realistic. If I need to do a lot on one day, it's usually safe to do so, as long as it's just one occasion.
Before I started to do this, my symptoms were wildly unstable, fluctuating severely, always sending me spiralling into long-lasting severe crashes.
With my form of pacing, I try to get out once every day, as long as I feel well enough (as long it's fairly comfortable for me) for at least one short walk.
I believe that one outing a day keeps me connected to the outside world, keeps me in the world of the living, gives me a daily aim, and stops my fitness deteriorating. Well, I just find it generally healthy to get out once a day, even if it's only to the local corner shop.
When I start to improve, then I start to increase my ambitions.
This approach to managing symptoms seems to work for me.
I've never understood the percentage rules for pacing: I don't find them intuitive or helpful.
Probably because I don't monitor my 'energy' levels. I monitor my levels of symptoms. So the percentage rules don't mean anything to me. When my body or brain starts feeling fatigued or painful, then I slow down, or stop.
I think that many clinicians advocate a 50% rule, and say that 70% is too high.
I'm more comfortable with a 50% rule than a 70% rule, because it just means do half as much as you think you can.
And many say always do less than 50% - the more caution the better.
But it's just a guide, and I think people must learn what works for them.
That's how I play it... All activities have got to feel fairly comfortable... Once I start getting tired or experiencing pain, then I stop.
I like to live my life with the most minimal symptoms because this massively improves my quality of life, but this means less activity. Whereas, it suits others to do more activity but with the unwelcome payback of increased symptoms.
