Living with Chronic Fatigue Syndrome

Everyone has suffered burnout at some time.  Times when we’ve pushed too hard and needed to take some time off, some time out or just to rest and reset.  However, for some people, the fatigue is even worse than that.  Difficult to explain and even more challenging to manage.  Chronic fatigue is an invisible disability that impacts approximately 1 in 250 people in the UK.  If you have never experienced the debilitating feeling that these three conditions share, then you have no idea just how difficult life is with fatigue.  That said, these top tips will help anyone who has felt the effects of burnout and tiredness.  Read on to find out more.

Because everyone is unique and everyone’s needs and expectations are different, the 12 tips here are based on personal experience with the expectation that this information might help you if you suffer from chronic fatigue syndrome, ME, or Post Viral Fatigue.  Even if you don’t, these tips of ways to pace your life to prevent burnout will be helpful.

Let’s get started:

1. Identify Your Natural Circadian

Most people think of themselves as morning people, evening or night people or acknowledge that they are most productive in the middle part of the day.  

We all run on a 24 hour natural rhythm that dictates when we’d sleep, wake up, be alert, productive, need rest if we could live our to our natural rhythms.  If we could live by our circadian rhythms, we’d all embrace the peaks and troughs of our natural daily rhythms throughout each day.  However, for most people that is not possible.  We have to be places and be productive at certain times of day.

Working it Out

A role where you have enough autonomy to manage your own workload and tasks will suit many CFS/MS/PVF sufferers enabling you to adequately manage the condition. 

Alternatively, a self-employed part-time role that allows you to respect your personal productive times will work for those who can take this option.  When its your own business you can flow with your natural circadian rhythm.  By planning to be most productive or to undertake the most difficult tasks at your peak times, the impact of fatigue will lessen during less productive times of the day when you can rest. 

2. Work with the Natural Ultradian Rhythm

Much study has taken place to identify how people can be most productive.  Interestingly, we all work to a 90 minute or hour and a half productivity cycle.  It’s a rythem adopted by many schools as a way to maximise productivity for students and staff – and it works.

A typical school day will have two 45 minute classes or a double lesson before break time.  After break there are a further two 45 minute or a double lesson before breaking for lunch.  In the afternoon a further two 45 minute classes or double lesson create a six-period day ended with tutor time before going home.  Some schools set the afternoon lessons at 35 minutes each or a double lesson of 1 hour and 10 minutes with a 20 minute tutor time to embrace the ultradian rhythms fully.  Your brain is most alert at the start of each 90 minute cycle and least focussed at the end of each 90 minute cycle.  Most people can continue to work past the 90 minutes but will not be as effective as they were at the start or for the first 90 minutes.  Ideally, everyone should take a break to rest the brain after each 90 minutes of productivity.  For those who suffer fatigue not pushing on beyond the 90 minutes is one of the most effective ways to conquer your fatigue syndrome.

What this means to those with chronic fatigue is that by adapting to the natural ultradian rhythm and taking a break every 90 minutes, starting again fresh after a break, you will be more productive in the long run.

Help yourself by gathering data on your rhythms and productivity.  Try the circadian approach if you can, and try with the ultradian rhythm management too, or as a stand-alone system and find out what works.

It is not unusual for those with a diagnosed fatigue syndrome to begin to notice the effects of burn out after 70 minutes.  You may or may not be able to push through for the next 10 minutes, but if you can and it enables you to complete a working day without crashing and burning, you will benefit and so will your employer.  Many employers will accept a drink making, toilet or eye break every 90 minutes, but they may bulk at the requirement for a break after just over an hour.

When your fatigue is so bad that you are unable to work, then you will find this method easier to manage and should quickly see improvements to your daily and weekly life.

In all cases by not having to push through, you are less likely to crash every few days, better for your employer, business and self-esteem.

3. Every Day is a New Day

Many with CFS/MS/PVF syndromes will manage to get through some days and then crash.  Sometimes, there is no apparent reason for a bad day.  By accepting a bad day as a bad day, you are being kind to yourself.  You may be unproductive on one day, but there is a real possibility that by listening to your body, that you will feel better and more productive tomorrow or the day after.

The tip here is to pace the good days and better days, don’t be tempted to pack the days too full or try and make up for the lost day, you will burnout.

Don’t beat yourself up about bad days, exhausted afternoons or the need for an early night.  Be curious about yourself and learn what works and crucially what doesn’t.

4. Keep a Diary

Working out what tires you the most at what time of day and what you have eaten, drank or what you ate or drank the evening before could all lead to a pattern that brings on the fatigue.

Click here for a CFS/MS/PVS Diary template.

When you can work out what drains your energy the most, you can work around those activities, work smarter and enjoy the possibility of creating enjoyable leisure time not taking all your down time as rest time.

5. Recording How You Pace is Not a Chore

Don’t see keeping a record of your days as a chore.  By noting how you feel, during and after different activities at different times of day you can move towards liberating yourself from the constraints of fatigue.  Be honest with yourself about what you do, when and how it impacts.  Be curious, consistent and look at the outcomes.

Try the strategies listed here and see how they help.  If I’d known about some of these sooner, I’d have eased myself out of years of suffering. 

Include everything, sometimes things that you think are relaxing can be emotionally draining, which means that the emotional impact manifests as a physical symptom such as exhaustion or pain.

6. Learn to Just Say No

I wonder if anyone has done any research into how many of those with CFS/MS/PVF also fall into the ‘people pleaser’ category.  Anyone will tire and burnout by taking on too much, so someone with fatigue who cannot say no is digging themselves a massive hole of despair and tiredness.

You must not feel guilty for saying no.  Yes, you can say ‘no, sorry’; give an explanation and maybe suggest someone else who could help, but don’t increase your anxiety and potentially fatigue by feeling bad about saying no.

7. Find the Easiest Way

Many tasks can still be undertaken when you suffer with fatigue by finding the easiest workaround:

Throw a ball for the dog to catch and return rather than attempting a 30 minute dog walk

When making a stew, make enough to freeze some for another day.  That way apart from reheating, you have only done the work once.

Order groceries online for home delivery

Invest in a stool for preparing food, washing up and even when cooking

Delegate tasks to other members in the household

Swop physical jobs for those you can do when seated

8. Pace Yourself

Have a routine for jobs at home, but don’t stick to them too strictly.  For example change the bed every Tuesday unless it’s a bad day, in which case push it out for a day and if necessary push the tasks for that day out.

Pace the day, by stripping the bed in the morning and making it up later in the day, allowing plenty of rest time in between.

Don’t be tempted to attempt all housework on one day or two days back to back, spread the chores across the week and don’t beat yourself up about pushing things out by a day.

9. Exercise Eases Fatigue

Yes, really!  A few gentle exercises and stretches each day and ideally two or more times a day will release endorphins into your system and make you feel better.

Yoga at home is a perfect exercise when you have fatigue.  On a bad day, choose a slow and short regime that will stretch and flex, leaving the more active asanas and routines for days when energy levels are higher.

Tai chi is another stretching exercise that will energise your body and mind and increase energy and productivity.

10. Embrace Your Breath

Learning the power of your breathe through breathing exercises can energise you when fatigued, help you fight anxiety and is an effective method of handling pain.  Good yoga teachers embrace the importance of breathe in their lessons.  Yoga with Adriene is an holistic yoga practice that even provides a free monthly calendar for those wishing to incorporate daily practice into their lives.

I highly recommend Adriene, she is my absolute favourite yoga teacher.

11. Note How Much You have Achieved

Noting on a calendar or in a diary the things that you achieve each week, will enable you to look back and realise how much you are achieving.  This should give you a real feeling of accomplishment that will empower you and in itself help to ease your fatigue.

This tip is pretty much essential when assessing your circadian and ultradian rhythms.  You may find that by discovering and then working with your natural rhytmes that you achieve so much more.  Having a record of your achievements enables you to easily revisit your successes and boost your morale.

Reduce Working Hours – Crucially the Working Week

Many of us have to work; we are the family breadwinner and have no choice. However, this can be overwhelming when fighting fatigue.

I successfully worked a four day week for years whilst managing my condition with very little time off sick. So the advice, if you are in the position of needing to work and cannot work from home in an autonomous way, is to seek out a four day working week job that will play to your strengths. Want it and think about it enough, but not from desperation and the job will be out there.