Sarahlaw wrote:Dr Bavington, can you explain what you mean by the following sentence? "This does mean ‘saying no’ to things that are currently significantly beyond your comfort level, but also increasing your activity when you don’t feel as good."
You seem to be saying that we should not exert ourselves if the activity puts us beyond our comfort level but also that we should increase activity levels when we feel bad.
There's a balance to be had, here.
There's a difference between 'manageable / average symptoms' and 'unmanageable / high' ones. The process involved in managing activity and symptom levels involves trying to keep a steady, regular routine of activities that does not exacerbate symptoms into the 'unmanageable/high' zone: it is not realistic to be symptom free, but just to have symptoms more steady by controlling activities that affect them.
To maintain this 'steady level' two things are needed:
1) To hold back when tempted to do more than the current capacity (and hence, avoid symptoms by 'doing too much')
2) On a more difficult day, to try to increase the level (as able, if manageable)
Some days this will not be possible, and they will need a different approach which may involve resting, relaxing etc - but the principle it to try to maintain what you can, when you can and to keep (where possible) to a consistent level.
Knowing what to do and when is not at all straightforward, hence why professional support and guidance from a therapist who understands CFS/ME is important to help come to decisions at a difficult time.
Here's a bit more clarity and what the NICE Guidelines has to say o the matter: (p249+)
Management of setbacks/relapses [1.7]
Preparing for a setback/relapse [1.7.1]
People with CFS/ME should be advised that setbacks/relapses are to be expected as part of CFS/ME. [1.7.1.1]
Healthcare professionals and people with CFS/ME should develop a plan for managing setbacks/relapses, so that skills, strategies, resources and support are readily available and accessible when needed. This plan may be shared with the person’s carers, if they agree. [1.7.1.2]
During a setback/relapse [1.7.2]
Setbacks/relapses may be triggered by factors such as unexpected/unplanned activities, poor sleep, infection or stress. Healthcare professionals, in discussion with the person with CFS/ME, should try to identify the cause(s) of a setback/relapse, but it should be recognised that this may not always be possible. [1.7.2.1]
When managing a setback/relapse, the management plan should be reviewed. Healthcare professionals should discuss and agree an appropriate course of action with the person with CFS/ME, taking into account:
• the person’s experience
• possible causes of the setback/relapse, if known
• the nature of the symptoms
• the severity and duration of the setback/relapse
• the current management plan. [1.7.2.2]
When managing setbacks, healthcare professionals should put strategies into place that:
• Include relaxation and breathing techniques.
• Maintain activity and exercise levels if possible, by alternating
activities with breaks and pacing activities, as appropriate.
• Involve talking to families and carers, if appropriate.
• Recognise distressing thoughts about setbacks/relapses such as
‘this means I’ll never get better’, but encourage optimism.
• Involve reconsidering and revising the levels and types of symptom
control. [1.7.2.3]
In some setbacks/relapses, it may be necessary to reduce, or even stop, some activities and increase the frequency and/or duration of rest periods to stabilise symptoms and re-establish a baseline activity level. This should be discussed and agreed with the person with CFS/ME. [1.7.2.4]
People with CFS/ME should be advised to minimise daytime sleep periods. However, healthcare professionals should recognise that this is not always possible, depending on the severity of a person’s symptoms and the setback. [1.7.2.5]
After a setback/relapse [1.7.3]
After a setback/relapse, healthcare professionals should review the person’s activity levels to re-establish a baseline and review the management plan. A gradual return, when possible, to previous exercise and functional routines should be encouraged. Activity should be increased gradually. [1.7.3.1]
Healthcare professionals should advise on:
• Slowly decreasing the frequency and duration of rest periods.
• Continuing the use of relaxation techniques, even when the person
with CFS/ME is beginning to feel better. [1.7.3.2]
After a setback, healthcare professionals and people with CFS/ME should review the experience to determine, if possible, whether triggers can be managed in the future, and put strategies in place to do this. [1.7.3.3]