Monday, 9 September 2019

Pacing, Activity Management and Rest - a toolkit

What is Pacing?

Pacing can be used by anyone living with a chronic illness/disability.

Pacing is helping you to keep a healthy balance between activity and rest by spacing out activities during the day. It enables us to take better control of our health and stay with our body's limits, even when we are unwell, and become experts in managing our health and life better and prevent exacerbating symptoms, or even causing a crash or relapse.

Though learning how to pace ourselves in can bring improvements in the way we feel and whilst it does take a lot of patience and self-control to learn how to do it in time most people are able to do more.

Learning how to pace ourselves allows us to gain a better awareness of our own limitations which allows us to better manage our energy levels and maximise what we are able to to on a daily basis.

It does take a bit of practise and work (and I'm still learning and improving myself) but once you've mastered it it will significantly help you manage your health.

The Traffic Light System

Traffic light 'to do' list from
© Stickman Communications
With he traffic light system it gives you a visual way of balancing activities to help you maintain your energy levels. and plan your day (for planning see below).

Green are easy tasks/activities
Orange are okay tasks/activities
Red are challenging tasks/activities

So with the traffic light system if you were to do a red task on your 'to do' you know to follow it by a green task or a period of rest so as to avoid overdoing yourself and making your symptoms worse allowing you carry on throughout day.

What is so good about the traffic light system is that you can adjust it for how you are feeling that day. So on a good day making a telephone call may be a green task, but one another day where you're running low of energy or you're feeling anxious making a telephone call may be an orange task.

What you label as red, orange and green is individual to you. 

Alternatively you could label green could also be labelled as rest, orange for low energy activities and red for high energy activities.

On bad days is is best to do more green and orange activities and if possible avoid red activities.

(Pacing Sticky Notes from © Stickman Communications) 


20:10

20:10 is another easy way to get a balance of activity and rest in your day. It basically entails 20 minutes of activities followed by 10 minutes of rest. On a bad day you could swap this around and do 20 minutes of rest and 10 minutes of activity or whatever is manageable for you. 


What is 'Activity'?

An activity is anything that uses up our energy, it may be physical, cognitive or emotional energy; basically nothing that is not complete rest. This could be anything from baking a cake, laying down listening to an audiobook and even getting upset or being in pain.

Using a balanced and steady approach towards activities prevents the tendency to overdo things which leads to an inevitable crash, relapse or exacerbation in symptoms.

Planning


Planning your day out is also a really important so you can spread out and use your energy wisely. You can use analogies such as 'Spoon Theory' to help you plan out your day and where to spend your energy of 'spoons'.

When planning what actives that you will do that day think it's important to categorise activities such as: physical, cognitive, high energy and low energy. This is where the traffic light system can be useful.

On bad days you should aim to do more green and orange activities.

I find using my pacing whiteboard and post-in notes really helpful to plan my day out, and if I do find myself running out of energy I can always rearrange the magnets to something that will be more manageable for the rest of the day. It's also a great visual tool, especially to colour coding (and I couldn't resist buying coloured whiteboard pens too!).

My whiteboard plan for the day using the Traffic Light system

Set yourself some reasonable and manageable goals for the day, like getting dressed, washing your face and spending some time out in the garden. Whatever is manageable for you to do on that given day. 

Remember, it's okay to have bad days and it's okay to do little on those bad days.

Find your baseline and stick to it, if 15 minutes of studying is manageable then just study for 15 minutes then take a break. Look after yourself as a car can't drive without fuel. Don't push yourself beyond your threshold, especially to please others, prioritise your limits, yourself and your health. And if that means cancelling plans then that's okay. 

(Pacing Fridge Magnet Set from © Stickman Communications)

Activity Management

This is slightly different to pacing but the idea behind it is very similar.
"Activity Management is an approach that combines pacing (which is to stabilise your ability level and grading (which is used to build up your ability level). - Severe ME/CFS: A Guide To Living by Emily Collingridge
To manage activities effectivity you need to listen to your body and work out how long you are able to do an activity for - this is your baseline. Your baseline is the amount of one activity you can do consistently without your health worsening. When you know your baseline you can know better your limits for good and bad days.

Everyone's baseline is different and how long one person can do a particular activity for differs for someone else.

When working out your baseline it's important not to make your symptoms worse. It may be help to keep a diary of your activities each day and note how long you was able to do that activity for to help you work out what your average baseline is. When taking your notes also make a note of your emotions as that can affect or energy levels as well as other notes such as your level of pain that day and breaking activities down with periods of rest. Slowly you will grade yourself up to increase the time you spend on an activity. When you listen to your body and let it guide you as to what activities you are able to do when; when you feel able to do something or not do something

And remember, it's okay to ask for help.

Switching

Switching is an important aspect of activity management. Often when you have a chronic illness/disability focussing on the same activity repeatedly during the day can exacerbate and make symptoms worse.

By doing different activities during the day can mean you are able to do more.


So switching could involve watching TV followed by making and eating lunch followed by doing your physiotherapy exercise followed by sitting in the garden with a hot drink. Doing this means you are doing a variety of different types of activity - cognitive, physical, high and low energy. Also, don't forget to plan in rest periods too.


Prioritising 

Try to prioritise the most important tasks and remember that there is always tomorrow. I find writing colour coded lists helps or using my reminders app which sync across my mobile, laptop and iPad helpful. You could carry a little list book or diary around with you or get a pack of differently coloured post-it notes.

When writing your 'to do' list or plan for the day make not of what actions have the most urgency, such as ordering medication you're running out of. It might help to number your list from 1 being to most important so you know that action needs to upmost attention so you can get them done first before your batteries start to run low.

If you're going through a rough time with your health and you have a lot of appointments it might also help to prioritise your appointments (this is something I've been doing lately). Look at what appointments you have, what appoints are important or can't be changed and what appoints can be postponed to a later date  so as to give you more time to rest and recuperate.

What exactly is rest?

Often we think that resting is laid watching TV or listening to music, and even though we are physically resting we are still actually stimulating our minds by using up cognitive energy - such as having to concentrate on the story line and listen to what is being said.

Complete rest means having no stimulus around us ignorer for our brains to rest. No sound, light, smells etc. To help you have complete rest you can put on an eye mask and use ear plugs or noise cancelling headphones/ear defenders. Whist resting you may try out breathing exercises, meditation or other things like visualisation. This type of 'neurological rest' allows or bodies and minds to recharge better.

When you have a chronic illness/disability, especially if you struggle with chronic fatigue having regular periods of rest or relaxation during the day is important when it comes to pacing.

Remember: never feel guilty for resting.


To sleep or not to sleep?

Some healthcare professionals say the having a sleep during the day can help to get better sleep as bedtime as this prevents getting over tired at bedtime resulting in difficulties getting off to sleep.

Some experts say they you should not sleep after 3pm.

Other professionals contridict this and say it is not necessary to sleep during the day and daytime sleeping can affect sleep quality at night.

I think its about really listening to your body. If it get to after lunch and your body just can't function without a nap then have a nap and then you can gradually build yourself up from sleeping during the day to just having a period of complete rest.

(Since reading about this doing this post I've been having a rest/nap in the afternoon and I have found benefit from this.)

Links and References