Pacing basics

What is pacing?

Pacing is all about balancing activity and rest to bring about improvements in the way you feel. The word 'activity' is taken here to include mental and emotional activity as well as the more obvious physical sort.
Pacing is not about pushing through activities and mental strain expecting rest and recuperation afterwards to 'sort you out'. It is about realising the limitations of your body and managing how you expend your physical and mental energy wisely.

Pacing is probably the hardest thing you will learn to do in your life but the benefits are well worth the effort of learning.

The boom and bust cycle

The 'boom and bust cycle' derives it's name from the habit patients have of trying to cram as much activity in as possible during a 'good day' and then spending the next few days recovering from this before doing the same thing all over again in an effort to 'catch up'.
This 'all or nothing' approach is the hardest habit to break as it is the one you naturally take. If the washing up has built up over a few days, when you feel well enough you clean them - then you'll tackle the hoovering and shopping, or go visiting, or make a few phone calls. Even if you take a small break after each activity, this is still the wrong approach to take.

Unlike other illnesses there is no real physical signal to an outsider that you are unwell, yes you may seem tired or distracted but then there are many completely healthy people who have days like that. The thing you must always remember is that this is an illness and it needs careful management - despite what well meaning advice is given to you about trying harder and doing more, never undertake an activity just to please someone else.
Only you know how deep your energy reserves are. It's always difficult wanting to do more - especially when coupled with the desire to please people, but by reigning that desire in and learning to say no, you can eventually get to the stage of being able to say yes again without worrying about how many days will be spent in bed suffering for it.

Pacing is not about doing as much as you can each day - it's about doing almost as much as you can each day. If you do a little less than you are able, over time you'll find that you are in fact doing more, without even thinking about it.

What can you do?

The simple response is "as much as you can" because different people with this illness have different levels of mobility. For those who are bed bound, something as simple as sitting up in bad and stretching can take all their energy - but you need to do this at least once a day in order to build up a little stamina. After a few weeks you may be able to use the bathroom unaided, after a few months you may be able to stand or even walk a few steps without help.
If you're feeling tired then don't push yourself to complete a task, just make sure that you at least do something - there is nothing wrong with doing a little each day and if things are left undone.. Well, they'll still be there to do tomorrow.

To begin with it's a good idea to keep an exercise diary in order to see just how much you already do, note down everything from telephone calls to walking the dog over the course of a fortnight. Do not forget to make a note of arguments or disagreements as these can be incredibly draining - much more so than a 15 minute walk even.

Once you've established the amount of activity you do in a day - even though it probably feels as though you do nothing, cut it down. Even if it's by something as simple as not checking your email, then in place of that activity, just sit down in a quiet room and think soothing thoughts - or listen to soothing music. However you find easiest to relax, do it - the main aim is to rest your brain as well as your body, so no reading or conversation, just take 10-20 minutes between activities to recharge.

You may find that 10 or 20 minutes is not long enough for you, it may also be the case that a short nap helps you the most. The key is in trying out different methods of relaxation so you can keep a constant level of energy throughout the day in order to complete the tasks you set yourself.

After about 3 months of keeping to a properly paced schedule, write another exercise diary and compare it to your original one. It's quite a boost to see in written form just how well you are doing, however, If things don't seem to be improving, look again at how much you are doing and kick it down a notch. The difficult part is reigning yourself in when you start feeling better - it's very easy to forget and take on too much, especially if for a few weeks you seem to be handling it fine.
Those kind of set backs can be incredibly depressing, but it's all part of the learning process - after a while you can detect the early warning signs your body is giving you and you know not to take anything else on. It's slow, but it works.