5 Practical Tips for Living With Chronic Fatigue Syndrome

Like many of us living with an incurable illness, I’ve been desperately searching for something that will help, even if only a little. In the beginning, I watched countless videos of people telling their stories of how they cured themselves through mindfulness or dietary changes and I’d follow their advice, only to have my hopes crushed again and again when it didn’t work for me. The thing is, for many people living with myalgic encephalitis/chronic fatigue syndrome (ME/CFS), there is no quick fix, there is no cure. Instead I started focusing on finding out how I could learn to manage and cope with my condition in the best way possible.

It took some time, but eventually I came up with five practical tips for living with ME/CFS that actually helped. I first shared these tips on my YouTube channel (Georgina’s Journey) and was overwhelmed by the positive response it had, so I wanted them to reach more people who needed them. Here are my tips — I sincerely hope they help you too, even if only a little.

1. Save your most energy-exhausting activities for the end of the day.

After becoming sick, I soon realized that things like showering and exercising would leave me completely exhausted and unable to get through the rest of the day without several energy crashes. However, if I did them in the evening, I found that I could get through the day with fewer naps and I also started to fall into a deeper, more restorative sleep at night. It was a win-win situation and I couldn’t be happier. It can also be applied to any level of illness, so for one person it could mean meal prepping or walking their dog, while for another, it could simply mean having their hair washed. Whatever your circumstances, apply this tip accordingly.

2. Allow yourself breaks (or naps) before you need them.

This has been the biggest game-changer for me. When you’re on top of your break/nap schedule, the world becomes truly becomes your oyster again. You know yourself best and you probably already know what time(s) of the day you start to crash; but if not, keeping a diary for a few days will soon reveal any patterns. Then you can start to schedule your breaks before your biggest crashes and save yourself from a lot of the discomfort.

For me, I feel nauseous, dizzy, and like my body’s made of lead during a crash, but if I have a break before it happens, I can often stop myself from going through it completely. For me, a break means lying down for about an hour, but for you, it could mean sitting down or having a nap. Find out what works for you and don’t feel like you’re failing by taking the breaks you need. Also, try to not to think of your breaks as wasted time because when you’re not resting, you’re going to be much more productive and more importantly, feel so much better for it.

3. Pacing — but not in the way you’re used to, bear with me for this one.

All of my doctors told me not to “boom and bust,” which means don’t do loads on your good days but nothing on your bad days. It sounds logical, but the problem for me was that I wasn’t really having any good days. To combat this, I started applying the boom and bust theory to individual days, rather than the whole week. The easiest way to explain it is that you never want to over-exert any part of your body, including your mind (as being mentally exhausted can make you feel physically exhausted). So instead of reading or editing a video for hours and tiring my brain out, as soon as I start feeling fatigued, I switch the activity for something like sewing or coloring. This gives my mind a break and lets my hands take over for a while. Depending on your own ability, you could also go on a short walk or try some gentle stretches.

4. Don’t set yourself up to fail.

This is something a lot of us may do without even realizing it. A common example is canceling plans or expecting to have a bad day because you didn’t get a good night’s sleep the night before. It does make sense, but it’s not always the case. You want to be ready to grab a good day by the horns when it comes. ME/CFS is variable and often doesn’t make sense. You might have a good day even if you didn’t get a lot of sleep the night before, so you want to be ready to embrace it. Telling yourself you’re going to have a bad day means you probably will, not just because it becomes a self-fulfilling prophecy, but because your mind and body are intertwined; it won’t be the cause of the bad day, but it could make it worse. Treat each new day as a clean slate, a fresh start, so you’re always ready to catch the good days, even if they only come around every few months.

5. Make sure you don’t have any vitamin deficiencies.

For most people, a vitamin deficiency might not be that big of a deal, but for someone living a chronic illness such as ME/CFS, even the smallest imbalance in the body can trigger a flare-up or worsen uncomfortable symptoms. To put it simply, a vitamin deficiency probably isn’t the cause of your problems, but it can definitely make them worse. Making sure you’re not deficient in any areas by getting checked by a doctor can help you feel your best.

These are my favorite tips; I wish you the very best of luck and I really hope they help!