Post Viral Fatigue Syndrome / M.E. / Chronic Fatigue Syndrome & Pacing

The Pacing Approach...

Please note: Post Viral Fatigue Syndrome, Myalgic Encephalomyelitis, and Chronic Fatigue Syndrome are believed to fall under the umbrella term 'ME/CFS'. To make it easier for you to read through this page, Sleepydust will use the term 'ME/CFS' to refer to them collectively. But it's worth bearing in mind that each of these separate terms have overlapping but different definitions.

When you have ME/CFS, you have a very limited amount of daily energy. Managing your energy levels can be a very difficult task indeed, especially if you want to avoid that 'boom and bust' cycle that can become all-too-familiar, for many sufferers.

So how can you go about managing your energy levels when you have ME/CFS?

What Does Pacing Mean For M.E. / Chronic Fatigue Syndrome Sufferers?

Many sufferers use the pacing approach to manage their energy levels. The aim is to try to stick to the 50% plan: to never use more than half of your energy.

How do you do that?

Easier said than done. But basically, you need to listen to your body.

When it comes to the pacing approach, it's all about energy conservation, so just remember - when you feel you could do lots more... stop.

A healthy person doesn't necessarily need to consciously think about how they'll manage their energy on a daily basis. If they 'use all their energy up', they can just eat a good meal, or have a good night's sleep, and bingo, they're bouncing back.

Let's face it - as healthy human beings, we usually don't have to think about how we manage our energy. So the pacing approach can take a while to get used to. This is especially true when you're a new ME/CFS sufferer, and are new to the 'physical and mental boundaries' that ME/CFS can place on you.

Pacing can certainly be frustrating and can take quite a bit of practice. But take heart - after a bit of trial and error, you will have a better idea of your boundaries and when you need to stop and rest.

"A Change In Perspective"

When it comes to pacing, it's important to conserve your energy. But that's only part of the journey...

What's just as important when you 'stop' and rest, is that you don't feel bad about it. After all, if the whole point of resting is to (ideally) move towards a relaxed, calming, and healing state, then feeling bad about it won't be of much help at all.

"For many, managing ME/CFS is very much about self-acceptance and letting go.

Why?

Because for many of those who have ME/CFS (moderately-to-severely), the illness can take them on a soul-searching, frustrating and often transformational journey.

If you find yourself struggling with ME/CFS, in utter despair and in complete confusion, then there are a few home truths I'd like to share with you...

First, your illness is real.

Second, you are not alone. There are many sufferers who are going through similar experiences.

And third, (and this point is often the hardest to swallow and yet the most liberating in many, many ways) try to look at this illness as your chance to stop and take stock.

The chinese symbol for crisis is the same symbol as for opportunity. Try to find that silver lining in that cloud. Search hard for it if you have to. Some days, we do have to search hard...

There are, after all, many different ways, many different perspectives to view a cup that's filled half way. Is it half empty? Or half full?

I say - choose to see your cup half full. And try to be aware of this if you adopt the pacing approach. For example...

While resting, you may catch yourself thinking, 'I should be doing this or that...' or 'I've got so much to do!' or 'This is so unfair!' Try not to let your frustrations eat away at the whole purpose of why you're resting in the first place.

Easier said than done, I know.

Personally, I try to remind myself of my objective: When I rest or want to relax, it's just counterproductive to allow these kind of frustrations to take over. What's more, it's just a waste of my energy - it takes much more energy to worry about things, doesn't it? Well it does for me, anyway!

It is only natural that you will feel frustrated with your situation. I used to get frustrated with how little I could do in a day. Or how ill I felt. And there are times when I still do. But as I have learned the hard way, this can just make matters much worse to cope with.

Instead, try to change how you view yourself and your life, at least for now...

It's at times like these - when we are faced with a great challenge such as coping with ME/CFS - that it's most important to continually look for the silver lining in everything, no matter how obscure it might be. And to make that way of thinking, a way of life.

So when you need to rest, try not to be too hard on yourself. Try not to feel bad about it.

Try to see it as a good thing. Focus on what's good about being able to rest, and the act of resting itself. Your time spent resting and recouperating can be a real, positive opportunity for your body to move towards that calming, healing state.

If they weren't beforehand, then you have reached a point in your life where you really do need to put yourself, your needs, and your health as high priorities. If you suffer from this illness even moderately, then you'll probably be increasingly aware just how true this is. Indeed, this illness has been hailed by many sufferers as a 'wake up' call, to stop and take stock.

This illness can be very harsh indeed. It can disable you to the point where you lose nearly all sense of self, physically, mentally, and spiritually. So I ask you: How can you be of help to others unless you look after yourself first?

Be good to yourself. That's perhaps the hardest feat of all when you feel so frustrated, confused, isolated, exhausted, weak, and ill. Breathe, laugh, heal - it's important."

-- Claire, Sleepydust --

'I changed how I looked at my life - what I should be, and how I should live it. I began to listen to my own body, and pace myself more carefully.'

--Paul, Cambridgeshire, ME/CFS Sufferer--

Managing The Pacing Approach...

Pacing yourself can be one of the most difficult things to manage. It means that you probably won't be able to do everything you want to do in the day - or even in the week. It means you'll probably have to restructure your life, at least for now, so that you stop when your body says 'stop'.

The aim with pacing, is to take a gradual approach to your normal activities. Many doctors stress that people who are too keen to return to active work for example, can often suffer a relapse. So with pacing, the aim is to take the 'softly, slowly' approach.

Try not to get frustrated with setbacks. After all, two steps forward and one step back still means you're going in the right direction in the end, right? Instead, try to figure out how much energy you can afford to use, and how much rest you need everyday. Each day will have its own agenda, with your symptoms getting worse one day and better the next.

"For a very ill person, too much can be taking a shower or making a sandwich.

For someone further up the recovery ladder it may be a conversation too long, a walk too far or too prolonged a spell at the computer."

-- Dr Lynne Michell, 'Shattered', p9 --

According to the pacing approach, if you push yourself too hard and use all your energy, you'll end up running on empty, which can result in a flare of symptoms or even a relapse. The theory is that, if you continue this way, you may end up in that vicious 'boom and bust' cycle. So if you wish to follow the pacing approach, the aim is to avoid using all of your energy up, and to 'harvest' some energy for recouperation.

"Pacing is so important when you have Chronic Fatigue Syndrome. You have to leave something in the bank, otherwise no interest will accrue, you are on empty all the time.

Invest time in your recovery. It is worth it. This was the best advice I think anyone ever gave me. You have to be disciplined."

--Lesley Martin, Nutritionist, Kinesiologist & recovered sufferer of ME/CFS --

Does Pacing Work For Everyone?

Hmmm. Well pacing is often recommended by medical professionals. And many sufferers follow the pacing approach.

But if you follow the Mickel Therapy approach, for example, then Mickel Therapists argue that pacing can actually work against your recovery process. So, it's important to remember that pacing is not universally accepted as a 'helpful' approach by everyone who treats ME/CFS.

This leads to an important skill for ME/CFS sufferers:

It's easy to get stuck in a rutt, and just do something because you know nothing else, or because that's just what you've been doing for years. So it's important to continue to monitor what you're doing to manage and recover from ME/CFS. And it's equally important to be honest with yourself about the results you're getting.

Question whether an approach is helping you or not, and to what extent. If you find you're not making much headway with the pacing approach, for example, then perhaps it's worth considering a different approach.

Bottom line?

Pacing does seem to help many ME/CFS sufferers, during some points in their illness. Many even incorporate the pacing approach in their recovery plan. So see if it works for you. Just don't forget that it's not the be all and end all, and that you have many other options if you find you're not getting the results you want.

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