Chronic Fatigue Syndrome (ME/CFS): What Improved My Life & What Made Me Worse
What I've been doing that helped me feel better and get the most out of life with ME/CFS.
If you have been diagnosed with Chronic Fatigue Syndrome (ME/CFS), long covid or post-viral fatigue, this is for you. I’ve been living with ME/CFS for 4 years now and have learned a lot along the way. I’ve gone from being back in bed by 11 am paralyzed by fatigue and brain fog, unable to work, drive or do errands, to now being able to do about 75-80% of what I did before ME/CFS.
ME/CFS is a genuine and disabling chronic illness defined by the World Health Organization as a central nervous system disease. The symptoms can be debilitating and frustrating, but there are many things you can do to help yourself feel better and live a more normal life. Here is what is working for me and what is not.
What's Working
Mindset
The best thing you can do is stop blaming yourself. You didn't do anything to cause ME/CFS. It is not your fault.
Being in charge of my mindset has been vital. I journal and practice gratitude every day and still aim to achieve one goal a month and three small tasks towards that goal daily. I make sure that these tasks have been broken down into the smallest steps possible and stay in my energy envelope.
I use a journal specifically designed for people with chronic illnesses to work on mindset, goals, track symptoms, sleep, digestion, stress, fatigue and pain. You can learn more about the journal by clicking the link at the bottom of this page.
Accepting Emotions
Emotions are a powerful thing. They can produce a physical reaction and be very draining if not managed well. Resisting, denying or bottling up your emotions causes greater suffering. Feeling your current emotions is very important to accepting your diagnosis of ME/CFS.
How To Feel Your Emotions
1) Name the emotion in one word; fear, worry, anger, anxious, hopeless, bored, etc...
2) Describe the emotion. Where do you feel it in your body? Is it heavy or light? Is it fast or slow? If it had a colour or shape, what would it be?
3) Breath in your emotion. Allow it to be there and feel it. Visualize the emotion coming in and out like a wave in the ocean as you breathe. Don't push it away but really sit there and feel it for 5 minutes or until you start to feel it lift.
4) Identify the thought that is causing the emotion. All emotions are created from thoughts. Ask yourself what is the thoughts that have you feeling this emotion? Write down these thoughts.
5) Create a new emotion. Name the desired (opposite) emotion you would like to feel instead. Write down three actions you can do to create that emotion today.
Practice "Practical" Pacing
"Practical" Pacing is what I call a version of pacing that fits into everyday life without strict schedules and rigid routines. It's planning for a balance of rest and physical and mental activity throughout the day. It's learning to listen to your body signals before you crash and being present without constantly looking for symptoms. When you have a flexible routine, you're able to plan a realistic amount of activity each day, avoid the bad days and prevent exertion-related relapses.
Movement
Finding movement that works with ME/CFS has been huge part of pain management for me. Graded Exercise Therapy caused me to go from mild to moderate ME/CFS left me scared to exercise.
My body became stiff and sore, I struggled to put my sock on in the morning, and by evening joint and muscle pain was unbearable.
I've found a passive, long hold stretching technique (not yoga) designed to re-establish a basic range of motion while simultaneously stimulating the vagus nerve to help avoid post-exertional malaise (I loved it so much I became certified to teach it).
Supplements
While most vitamins, minerals and other supplements are generally safe, large amounts can harm your health. Every person is different, and you must seek advice from a qualified professional before starting any supplement program.
Here is a list of the supplements I take and are generally recommended for people with ME/CFS.
Methyl B12 5 mg
Coenzyme Q10 Ubiquinol, 100mg 2 x per day
Vitamin D
Acetylcarnitine SAP, 500 mg 2 x per day
Cod liver oil, 1 tsp 2 x per day
Electrolight Drink: 1 lt water, 30 mg lemon juice (taste), 10 g D-ribose, 5g L-Glutamine, & a pinch of salt. (I try to drink two per day)
Medications
Again every person is different, and you must seek advice from a qualified professional. I do take medications for ME/CFS and have found them quite helpful, but these drugs do not work for everyone, and there are side effects. My doctor has prescribed me Low Dose Abilify and Low Dose Naltrexone.
Sleep
Before ME/CFS, I would get 5-6 hours of sleep a night. I would get up early to exercise and get a couple of hours of work done before my family woke up. Now I make sleep a priority. I no longer get up insanely early, and I try to go to bed at the same time. I track my sleep with a fit bit.
My doctor suggest to make your bedroom as dark, cool, and comfortable as possible and only use for sex (if you’re so lucky) and sleep. I know it's expensive, but good bedding is worth it, so is an eye mask.
I also try to use the 3, 2, 1 Sleep Method. 3 hours before bed no more food, 2 hours no more work (includes housework), 1 hour no screens.
If you are dealing with insomnia, make sure to speak to your doctor to find a solution to help you get a better night's sleep.
Yoga Nidra
Yoga Nidra is a type of meditation that produces a state of consciousness between waking and sleeping. You practice Yoga Nidra by laying comfortably with a blanket & eye mask and listening to a guided body scan.
I practice Yoga Nidra almost daily for 12- 60 minutes at a time. If I am really active I’ll add a second session that day. Yoga Nidra is the most important part of resting when planning my day/pacing. If I feel hesitant do it, then I double the amount of time.
I use Insight Timer; it is free app and has many different options for length of time, teachers and techniques.
What Didn’t Work
Brain Retraining- caused a 9-month crash where I was stuck on the couch
CBT- Helped let out the anger I was feeling but did nothing for the fatigue.
Graded Exercise Therapy- I went from mild ME/CFS and performing most exercises and able to handle 15 minutes on the treadmill to not even tolerating 1 minute and having moderate ME/CFS.
Elimination Diet- lack of variety and cutting out certain food groups left me more exhausted.
Pushing Through Fatigue- end up falling & broke my shoulder because I was exhausted and dizzy and tried to go up the ski hill to watch my family race.
After years of dealing with ME/CFS, I am at a point in my life where I can go out with friends, do the grocery shopping on my own (if I have to) and sit here and write this.
ME/CFS has taught me a lot about patience, what's truly important, slowing down and enjoying the simple things. I wish I could say that there was once magic element that helped but it’s been a combination of many things and completely overhauling my life to accommodate for ME/CFS. I hope that this blog post has some info to help. It may not work for you. But it's worth a try.
I will post updates as I find any other practices, devices and diets that help.
If you're struggling with ME/CFS crash, check out my FREE Crash Recovery Cheatsheet by clicking HERE.
