We all get tired sometimes, but fatigue is something different, as the Mayo Clinic explains: “Nearly everyone is overtired or overworked from time to time. Such instances of temporary fatigue usually have an identifiable cause and a likely remedy. Unrelenting exhaustion, on the other hand, lasts longer, is more profound and isn’t relieved by rest. It’s a nearly constant state of weariness that develops over time and reduces your energy, motivation and concentration.”

There are many medical reasons that people experience fatigue, and there’s even a syndrome that is specific to the debilitating long-term experience of fatigue (among many other symptoms), chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). More than 1 million people live with this condition – and over 84% of people who have it don’t know, making it underdiagnosed and meaning that people are suffering without validation of their struggle or any ways of knowing how to make it better, even in small ways.

There’s a lot of stigma associated with conditions like CFS/ME due to people’s difficulty to wrap their minds around what it would be like to constantly feel like this, and due to the aforementioned distinction between tiredness and fatigue that gets overlooked. Though I don’t have CFS/ME, I live with constant fatigue due to chronic pain, and I know many people with CFS/ME and other forms of consistent fatigue. I know how hard it is and I see how hard it is.

If you are out there feeling low on spoons, know that you are not alone, are in fact in good company, and have the ability to improve your situation in small or big ways.

Here are a few of my tips about how to live well, despite the trouble of fatigue. (For even more tips, here are 25 of the most important things I learned at Mayo Clinic’s Pain Rehabilitation Center, where I learned how to thrive despite debilitating pain and fatigue).

• Practice good sleep hygiene. The link attached has tips about how to ensure that your sleep is as restful and successful as possible. Some of the tips may seem counterintuitive or difficult to incorporate. I remember that when I was told to exercise to help beat chronic pain and fatigue, I almost laughed because I didn’t understand how that could help me – why would I exercise, since I was in pain and so tired? But then I learned how to do it in a way that worked for me: exercising gently – doing stretches in swimming pools, biking, dancing to music, whatever feels good. You will find ways to make these tips part of your daily life over time and they will help you immensely. I sleep better now than I have in years. I used to have only high quantity of sleep, but not high quality; now I aim to have 9 hours of restful, restorative sleep. each night
• Simplify your schedule and prioritize your activities and people. Learn to say no to the things you can (and want to). Of course, there are certain things about your life that you won’t be able to change or say no to, but when you can, use your discretion and follow your heart. When you have limited energy, you have to be thoughtful about who and what you say yes to. I wrote a post about how to manage having a busy social life, even when you have little energy. Some basic tips: learn to spend your time around people who increase your energy rather than drain it. Give up people and things that take away from your energy. Let your trusted loved ones know what’s going on in your life so that they have a better chance of understanding when you have to cancel plans. Be patient with people as they adjust and understand that there’s a good possibility that not everyone will be as empathetic as you had hoped for. You must do what is right for you and that is final.
• Ask for help from others when you need it. What takes you a lot of energy might be no big deal for someone else. This is not to say that you are weak – you’re absolutely not weak – but just that in this way, your friend may be better equipped for the task. Work up your courage and realize that you are a superhero, but that you have limits and you need others to help you. If you see that your house is beginning to look like quite a mess, ask a friend or two if they would help you clean up. Make it a fun experience – listen to music and repay them with food, friendship, and love. Save your precious energy for what others couldn’t do for you if they tried – the tasks that only you are equipped for, that no one else knows how to do!
• Eat food that doesn’t slow you down any more than the chronic fatigue already does. Notice what foods make you tired. Notice what foods make you uncomfortably wired. Begin to take notice of everything you put into your body and how it makes you feel. Try not to become obsessive about it, but just mindfully pay attention. For example, foods that take a long time to digest – fatty, fried, greasy meals – leave your body feeling tired. Aren’t you already tired enough? Maybe try something else. I cut gluten and dairy and saw great results – no longer falling into “food comas” after each meal is a beautiful thing – but these may not be your personal problem areas.
• Talk to an empathic, understanding, and respectful medical professional and ask for guidance. Rheumatologists, neurologists, psychiatrists, and general practitioners are the best medical bets for help with CFS. Make sure, as much as you can in terms of your insurance coverage and ability to pay, to go to someone who is regarded both for their intelligence and for their empathy and bedside manner. Sometimes, with invisible illnesses such as chronic fatigue syndrome and mental health concerns, doctors can be not as understanding as we expect, so do your homework on who you are going to see. Ask them what they think could help and try what you can and what your gut and your research tell you to. Diet changes? Lifestyle changes? Nontraditional medicine? Traditional medicine? It’s all up to you, friend.
• Make sure your mental health gets care and attention, too. See a therapist, if you don’t already, to help talk you through your anxiety-based thoughts as much as possible. Breaking some thoughts that are no longer serving you is crucial. Learning to change your unhealthy habits, whatever they are, is crucial as well. Try to meditate or practice mindfulness. Whatever feels right, do it. There are so many great books out there for whatever mental health problems you are struggling with, friend. I highly recommend Brené Brown’s, Jon Kabat-Zinn’s, and Pema Chodron’s books or videos on wholehearted living and mindfulness. Also, Rick Warren, a Christian pastor, has a book called “What On Earth Am I Here For?” that has helped me more readily find my sense of balance and peace in this wild crazy world we live in. There are countless great books – ask your friends and practitioners for recommendations if none of these strike your fancy.
• Understand that your definition of “your best” will be different every day. Some days, you will be able to cross all things off your to-do list. Some days, the best thing you will be able to do is shower. That’s okay. Do your best. This advice is not a call to perfectionism. Perfectionism is dangerous to people both with chronic illness and without. Your best is your best and it is not the same from day to day. Some days are A+ work days and some days are C- work days. Keep yourself within reasonable, achievable limits based on that day’s amount of energy. And, lastly…
• Be kind to yourself. You have a chance to be your own biggest cheerleader here. I know this seems really unlikely and unfortunate, considering you may be quite frustrated at yourself, but there is enough criticism out there in the world already – you don’t need to add to it! Love yourself and embrace your limitations as much as you can. Frame them as positively as possible. This is hard and it takes a lot of time to adjust to. Just know that someday, you will be proud of yourself when it’s an A+ day and be able to laugh at the ridiculousness of a D- day. Remember that you are you and that your worthiness does not depend on how much you get done each day or how much, by society’s standards, you fit the typical images of success. You are you and you are a unique contribution to the world, no matter what you do. “Start where you are. Use what you have. Do what you can.” – Arthur Ashe