Lets Talk Pacing!

So what is Pacing?

Pacing is doing small amounts of regular activity guided by time rather that pain. A lot of people will carry out an activity using pain level as an indicator of when to stop. Pacing aims at stopping an activity before the pain increases and knowing when enough is enough.

People suffering with Chronic Pain tend to wait for "good days" in terms of pain levels to come around and then they will do a lot, pushing themselves to the absolute limit and as a result will end up in more pain and resting for a longer period of time. Pacing teaches you to do a realistic amount of activity so as to not completely exhaust yourself resulting in not being able to do anything for long periods.

It is very important to pace every activity up little by little, even things like sitting down and standing up.

Just standing up can be difficult for people with EDS-HT because it is a constant battle to 'just be'. We have reduced ligamentous support and proprioception so we spend time exploring with each joint just to get a sense of 'where we are', which is even harder when standing. What everyone does subconsciously we have to consciously think about all the time, which is why we become fatigued so quickly due to using up extra brain power.

So how do we measure Pacing?

When measuring pacing, two measurements are taken of a particular task or exercise.
For example, Standing... I would start off by measure my standing tolerance one day and then repeat the same thing again the next day, giving me two measurements. This is how we would work it out.

So if on Monday i managed to stand for 60 seconds and then on Tuesday i managed to stand for 90 seconds we would add the two totals together, divide by two and minus 20% to get a baseline reading.

60 + 90 = 150 seconds
150 / 2 = 75 seconds
75 seconds - 20% = 60 seconds

That gives us a baseline starting point for standing of 60 seconds. You may then decide to 'pace' up this activity by 1 second a day. So if you started at 60 seconds on day 1, by the following week you would be on 67 seconds.

Applying Pacing to a Task – The Rule of the 3 P’s

Prioritise -  Do you need to do the entire task today / in one go? Can you get someone else to help? Does the task need to be done at all?
Plan - Can you break the job into different stages? What do you need to carry out the job? What basic activities does each stage involve? (e.g. walking, sitting, standing)
Pace - There are 3 main aspects to pacing: 1. Breaking tasks down into smaller bits – Part of prioritising 2. Take frequent short breaks a. Do something for a set time b. This breaks the overactivity / underactivity cycle c. Helps to even out your activity over the course of a day d. ‘Taking a break’ does not mean stopping completely e. Change your position or do something else for a short while.

The benefits of pacing are that you will be able to do things more reliably, rather than being able to do a huge amount one day but then nothing for the next 3 days because you were recovering. 

I hope this makes sense :)