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50 things I’d tell my younger self about ME/CFS recovery: Part 1

I healed from ME/CFS two years ago. Here’s what I’d tell my younger self when my health unravelled in 2016.   

I recommend reading each one slowly and only a few at a time. This is years of wisdom, so go easy and take time to reflect.

As a friendly reminder, this is a note to myself and some things might not resonate with you (and that’s cool).

First 25 things I’d tell my younger self about ME/CFS recovery

1. It is never the wrong decision to put your health and happiness first. 

2. Change your goal from trying to get others to understand how difficult things are to “what’s going to help me feel good right now?”

You may not find validation where you hope to find it (the medical system, loved ones) and may have to give yourself that validation.

3. You have nothing to prove to anybody else. Let go of the need to prove your value, your worth, your contribution, your argument, your good-person-ness. 

Your worth comes from within.

4. Stop asking for permission or apologizing and just do the thing you need to do.

Don’t waste time justifying your decisions to others (i.e., taking an Uber 2 blocks if you need to or say “goodbye” without a long explanation.)

5. Healing from ME/CFS is possible, but it doesn’t yet come in a bottle.

You aren’t still sick because you weren’t able to find someone with your identical symptoms and triggers on Google and take exactly what herbs, supplements, and drugs they took. 

It’s statistically impossible to have the exact same symptoms as someone else, and for most people who heal, there is no one quick fix that comes in a bottle.  

6. Subtraction is more important than addition. No supplement or treatment is as helpful as the things you remove from your life. 

Remove the things in your life that detract from your healing and happiness. (Engaging with negative or toxic people, unnecessary chemicals, stress, news, debates, celebrity gossip sites, sugar, alcohol, excess social media, Twitter, and most importantly excess computer and phone overstimulation.) 

I found this insight from an insightful guy who healed from severe ME named James.

7. Search for the recovery stories rather than “cures for ME/CFS.” Look for the patterns. Keep an open mind. If something doesn’t resonate with you, that’s a good thing, you’re listening to your inner wisdom – and it’s not a fit or not the right time.

8. Don’t rely on doctors for validation or expect them to find something broken with you. 

Our medical system is simply not equipped to prevent or treat chronic illnesses, for which there is no quick fix.

Use doctors as a tool for information about your body — to identify what’s blocking you from healing. 

Not for validation (they likely won’t give it because most are not educated in ME/CFS). Not to fix you (a top functional doctor says that 90% of healing from chronic illness happens outside the doctor’s office).

You are not broken, even if it might feel that way on every level. According to research, ME/CFS is a type of block in the healing cycle. 

Trying to “find what’s broken” won’t lead you anywhere productive. You’ll find that removing the blockers to support your body’s natural ability to heal is your best approach.  

Also, know that emergency room doctors can stop you from imminent decline, but are not always equipped to give you answers to alarming symptoms or provide validation when you arrive in the ER at night.

Keep in mind there are also practitioners out there who are aware of the need for validation and will give you this for a hefty price-tag.

[Note: Nothing in this blog is medical advice, this is a note to myself.]

9. Look at your life like a scientist. 

What are the sources of stress in your life blocking you from healing (environmental, physical, mental, emotional)? Did you recently move? Does your job cause you stress?  Do certain activities cause your body stress? Do certain situations cause you stress? Do certain people cause stress? 

Keep in mind that many doctors are not trained to look at you longitudinally over time, but rather are trained to look at you based on symptoms you present with in a 10 minute visit and compare them to average symptoms of things they learned about in medical school. 

Read the book “The End of Average” on how the average person does not exist, and why we all should take individual and longitudinal approaches (vs comparing people/ourselves against the average).

10. Healing your fight-or-fight response is your #1 job. 

It’s helpful to first eliminate key sources of stress (stop pushing yourself, avoiding added sugar, switching to environmentally friendly cleaning and personal products, cutting out the news, limiting social media, limiting contact with people that elevate your stress hormones, etc., setting healthy boundaries). 

When the body is in a parasympethetic rest-and-digest state, it can more easily heal.

Research continues to pour in that shows that sympathetic over-activation of the nervous system is a key marker and driver of ME/CFS. There is new evidence that ME/CFS and Long Covid are marked and driven by an ongoing limbic system injury, whereby the grey matter of the limbic brain is impacted. The good news is that we can do things to resolve this and improve our brain’s plasticity and grey matter. See the research.

After removing sources of stress, focusing on your nervous system (rather than spending thousands of dollars and painstaking effort trying to kill pathogens or avoid all chemicals, germs, etc.) is your best bet and – in the long term – most affordable path to recovery and resilience. 

You’ll discover a twice a day meditation practice, belly breathing, and later health visualizations to elevate your state and generate a parasympethic response in your body when it’s the right time for you. You’ll also read great books like The Power of Now, Getting into the Vortex, The Untethered Soul, The Presence Process, The Energy Codes that will give you wisdom (you’ll take what you need from each).

The goal is not to avoid stress forever, but rather to significantly reduce it (all forms of it) and to gradually strengthen your nervous system’s resilience. 

Reminder: This is a note to myself.

11. Move out of your very old, dark home (even if it’s charming). Move to a newer, sun-filled home with a dishwasher. Get help moving, if you can, and spend twice as long preparing to move and unpacking then you think you need. 

Go somewhere closer to nature if you can (if only for a short time). Try to find ways to get into nature that are in your health zone.

12. ME/CFS isn’t what you can do in each moment, it’s what you can recover from. Remember this.

13. Fix your sleep. Our body’s repair mechanisms mostly happen during sleep. 

Read the book Sleep Smarter and tailor it to you. A few key tips: Get into a healthy circadian rhythm by getting 20-30 minutes of early morning sunlight. Sunlight is also a great source of Vitamin D. Avoid screens after dinner. Start getting ready for bed at 9:00 pm. (Apparently sleep 10 to 2 am counts double.)

14. Don’t play the “Who or what’s to blame?” game after a crash. This strengthens the trauma loop in your brain, increases stress chemicals, and causes division. Instead, consider unhelpful patterns that got you there, if applicable.

For instance, instead of “I crashed because I walked too far in the cold, it’s my spouse’s fault for not noticing I was overdoing it, and I must never get myself in this situation again!”

“My desire to please others by keeping up with them isn’t helpful for my healing. Going forward, I’ll do what’s easy and stop whenever I need to because I am the type of person who puts my health first.”

15. See every crash not as a failure — but as an opportunity to show your ability to bounce back. 

 “This is an opportunity to show myself love, create new neural pathways, and support my body’s recovery mechanisms to come out of this stronger and more resilient than ever.” 

16. Healing can often mean feeling like a total weirdo. Learn to embrace it. 

Healing can mean feeling like a total weirdo. Embrace it.

It may involve chanting mantras. It may involve lying on the sidewalk in front of your house in the sun. It may involve asking for wheelchair assist at the airport as a 30 year old. When you’re fully healed, nothing will seem “embarrassing,” and you’ll be unstoppable.

17. Tell loved ones ways they can support you and remind them, rather than getting upset about what not to do. 

18. You don’t need to go into the whole run-down of your struggles/challenges/symptoms if you can’t do something or reneged on a commitment because of your health.

Instead say “That’s not in my health zone today” and “Thanks for understanding.”

19. Don’t put pressure on yourself to do more or go all out to “fully live life.” 

The secret of recovery and life is learning to be content with the little things and small steps. 

This could be sitting outside and enjoying the peace of nature or being proud of yourself for staying fully hydrated today and doing your morning routine. When you’re eventually able to do more, you’ll have a much greater appreciation and present awareness of life (rather than just passing through, on to the next achievement).

20. Feel all your feelings fully, let them flow through you, and then let them go. Cry if you need to. It’s healthy sometimes to just have a Big Ugly Cry. Write it all out in a journal. If you’re angry, use it as a spark for change, but don’t let it consume you and keep you from moving forward.

Remember your WHY for healing (your dreams, your future kids) and how it’s more important to you than your anger for what they did to you (or didn’t do). 

You have the power to turn the page and write your next chapter.

21. Find ways to cultivate joy each day. Find ways to laugh. Watch comedies. Read funny books. Sing in the shower or tub. Write cute notes to your partner. Send funny cards to your friends with heartfelt messages. You’ll get even better ones back that you’ll treasure. Be silly.

22. Keep a gratitude journal and write in it every morning and/or night.  When you’re on the other side, you’ll turn back the pages of your old journal and see how you listed what things you were grateful for when you were in the depths of hell. You’ll cry when you realize that this is a part of why you’re able to appreciate life more now than you ever were.

23. Don’t put all your hopes for happiness on one future event, then overdo it at the event (because you “saved up for it”). Keep things simple (don’t try to make 5 dips for a party you save up energy for 3 months for). 

Before events visualize with your loved one/s or just yourself it going the way you want it to and how you want to feel during it. 

Remember, it’s all about joy, not impressing others.

24. Don’t try to overcompensate on ‘good days’ for not being able to (work/help around the house) on tough days. Take it day by day and moment by moment.  

25. If your energy/symptoms fluctuate within a single day, the second you have energy or feel slightly better don’t immediately attempt to try to “achieve” something. 

Try to savor your extra energy vs. spending it to prove you’re a good or productive person.  

Thanks for reading this far. I hope something above is helpful to you. 

As a reminder, these are things I learned the hard way. Meaning I didn’t follow many of these for a lot of the time I was sick. So I hope it didn’t come across as prescriptive or judgmental. It was really a note to my younger self in hopes it might inspire or be useful to you.

Part 2 (number 26 to 50) is coming next.

If you’d like practical and uplifting health recovery information, please sign up for our newsletter below. This blog is not medical advice nor meant to contradict what you have discovered yourself to be true. 

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