My CFS Recovery Recipe
What I learned from my recovery from Chronic Fatigue Syndrome that may help those recovering from Covid-19
When I started to read about the post viral symptoms many have been experience as they recover from Covid-19, it was scarily similar to many of the symptoms experienced with chronic fatigue syndrome.
An article in the Guardian on July 6 2020 (today) also started to make the connection. I want to say up front I am in no way saying that if you are recovering from Covid-19 that you will develop CFS please know that. Having recovered from CFS I wanted to share my learnings to provide hope to those struggling with crippling fatigue, brain fog, muscle aches, headaches. It can be scary and lonely.
Why A Recipe?
I wrote this post many years ago about my CFS recovery recipe. I called it a recipe because we are all unique and our bodies respond differently. I have for many years considered CFS to be on a spectrum of severity based on your physiology, self care practices, length of time to be diagnosed and support provided to recover.
I share my recipe below in the hope it may spur an idea, an opportunity to focus on one thing that may support you or someone you know with their recovery from Covid or CFS.
It is incredibly scary when you have no idea why your body and mind are no longer co-operating the way they used to. Be gentle with yourself, try not to push too hard, it takes time to recover.
I hope this helps in some small way. Experiment, build your support team, ask questions, ask for help never give up hope.
Disclaimer: I am not a medical practitioner and this should not be constituted as medical advice. Always consult your medical practitioner before making any changes to your medical regime.
My CFS recovery recipe
Find an integrated medical practitioner who understands and has supported people with CFS
Acupuncture
Food as medicine
Boost your immune system – using supplements
Learning to listen to your body
Reducing the Toxic Load
Acceptance of the new normal – speak to a psychologist
Communication and support from your employer
Learn to say yes to you and no everyone else
Micro-moments
Breathe - Tune In
Meditation
Alcohol
1. Find an integrated medical practitioner who understands and work with people with CFS
I kissed a lot of frogs in the early days and my condition was dismissed as short term post viral fatigue. I was offered antidepressants (which I declined) and told to rest. I found my GP by searching for CFS conferences in Australia (where I was living) and looked at the speaker's list. My GP was an integrated health practitioner blending east and western medicine to support his patients. I worked with my GP for two years and had regular monthly visits to monitor my progress.
2. Acupuncture
This was my key, it changed my life and my recovery. I continue regular acupuncture to this day.
I discovered acupuncture after about eight months of wandering in the wilderness of trying to figure out what to do next. I had a session and after felt so much better. Then I didn’t have another for a while, booked another one and felt better – hmm something to this I thought. So, I started to have regular acupuncture, sometimes every week, sometimes every two weeks. Yes, it was expensive but I would do anything to feel better.
Community acupuncture is fantastic and more affordable that a private session. There are many community centres in different parts of the world. As with most things consistency and regular attendance is important.
3. Food as medicine - Unloading to rebuild
You do not have a lot of energy to spare so it is important to understand how you are using your limited energy reserves. With CFS my body was so overloaded and overworked processing the food I had been giving it. My diet did not have enough plants but was rich in caffeine, refined sugar, carbs and wine.
Day one at the doctor we changed my diet immediately. No caffeine, no refined sugar, no alcohol, no gluten, no dairy – basically everything I had been eating was removed including my cup of tea with two sugars and milk gone, never to return.
Nutrition is everything without fuel you cannot function or heal.
4. Boost your immune system – use supplements
I had a very depleted immune system that needed a lot of TLC. I took a range of supplements recommended by my GP to start to rebuild the body that I had managed to break. My GP was also a homeopath so I followed a protocol which we reviewed during every visit. Everything from pine needles to Co-enzyme Q10, Zinc, Vitamins C, B complex, Curcumin, Vitamin D …I can’t remember them all, many I still take today and understand my body better and can gauge what it needs.
Ultimately, we should be able to get all of this from our diet and daily lives (getting in the sun) but sometimes it is not so easy, sometimes we need a helping hand.
5. Learn to listen to your body
Sleep is essential, it is how the body repairs itself.
I rested as much as I could. This meant doing nothing, absolutely nothing, not watching TV, not reading, lying in bed or the sofa completely resting. Using as little energy as possible to allow me to rebuild my reserves. I made sure I had a regular bedtime and stuck to it- being exhausted this wasn’t hard.
I made the mistake many times during the first year of doing too much when I felt better. This would result in me crashing and having to stay in bed for days after. This pattern kept on repeating until I finally learned about my energy envelope.
Your energy envelope is the amount of energy you have on any given day. I had to learn to really listen to my body. I did a dance with it every day. How was I, did I feel good or not so good? What did I think was possible that day? Learn to listen, our bodies are so wise, our ears are sometimes deaf.
6. Reducing the Toxic Load
We live in a world full of toxins but there are a few things which are within your control.
Where possible I ate organic. I also only used non-toxic products to clean my apartment and often essential oils like lemon which is naturally antibacterial.
I did a review of everything I put on my face and body and if I wasn’t prepared to eat it then it wasn’t going on my body. I threw out plastic containers and replaced them with glass. I replaced my non-stick pans with stainless steel.
It takes time but was well worth the effort.
7. Acceptance of the new normal – speak to a psychologist
Before CFS and after CFS, this is how I looked at my life. There are things to this day that I still can’t do to the same level that I did before CFS and that is ok. It is hard to adjust to this new life. My doctor recommended I speak to a psychologist and I am very glad I did.
I had around ten sessions with a psychologist to help me adjust to my new normal. It’s hard to do alone, lean on professionals it helps. It was referred to as an adjustment disorder basically helping me to come to terms with how life now was. It was extremely helpful however, I never every thought I could not recover.
8. Communication and support from your employer
After about a month of seeing my doctor, I still wasn’t feeling any better. My energy levels were still less than five out of ten and I just wanted to stay home and sleep. My brain still felt like it was stuffed with cotton wool and it would take me what felt like an eternity to write one email.
My doctor said to me “if I sign you off work you may never work again, you need to learn how to work differently and with the energy you have”.
At the time, I thought it was pretty harsh and I was confused and upset. On reflection, it was the best gift he could have given me. I was forced to work within my energy envelope and speak to my employer about modifying my hours to help with my recovery.
This will not work for everyone and I absolutely respect and understand but for me, it was the right decision, it wasn’t easy but it was right for me.
I spoke to a caring individual in my HR department and she helped me design a plan that I took to my boss and my team. Everyone was incredibly supportive. It was not an easy conversation for me to have but one that was absolutely necessary.
9. Learn to say yes to you and no everyone else
I am a natural people pleaser part of what led me down the CFS path to start with. I had to learn to say Yes to myself and no to others. It was hard at first but the more I did it, the easier it became. Those who love you will understand.
10. Micro-moments - Celebrate the small things
Celebrate the small micro improvements they are extremely important. At one point I was unable to stand in the shower so I would have to sit for a while. Then one day I could stand for longer and I celebrated this micro-moment of joy. I didn’t dwell on the negative emotion I focused on the positive. Small steps lead to incremental improvements.
Gratitude is important in life, to help us move away from focusing on the negative to focus on the positive. Being sick is hard but maintaining a positive mindset is crucial to recovery. Believe me I know it is hard, I truly do. It’s ok to cry, and get angry but don’t dwell there.
11. Breathe
The importance of taking time to notice how you breathe and learning to breathe low and slow. At the time, I didn't realize that I was breathing high up in my chest and rapidly.
My breathing was activating fight or flight, like a permanent on switch for cortisol and adrenaline. I now teach breathing, it is a foundation pillar to a healthy life both mentally and physically. Spend 5 minutes tuning into the breath and learn a new mantra low and slow. Belly, diaphragm, chest enjoy each nourishing life-giving breath.
12. Meditation
I found the cognitive changes much harder to deal with that the physical aspects of CFS. I had extreme short-term memory loss, especially in the first few years. It was so frustrating, I knew what I wanted to say but the words would not come.
To be honest, I dipped in and out of meditation over the first few years but I now have a daily meditation practice that I cannot imagine my life without. One of the many benefits I have found is my short-term memory and memory, in general, is vastly improved.
These are my tools, my rituals all of which I have cultivated over the years to return to health. I have many others I have added since the early years but these were the areas that I focused on to start that road to recovery. It's not easy. It takes time. Never give up hope.
13. Alcohol
This one is never popular. Booze depletes your immune system, makes your liver work really hard can lead to increased anxiety and prevent good sleep. Try quitting even for a while, just until you have recovered and then if you chose to re-introduce it slowly.
Three years ago I quit completely, do I miss a drink, sometimes for sure but my health (mental and physical) is vastly improved.
Please reach out if I can help clarify anything for you and listed below are some resources. Thank you for taking the time to read.
Resources
If you think you may have CFS/ME please see below some resources that can provide you with information and contacts.
Acupuncture
If you would like to find a practitioner see the links below and also happy to share my acupuncturists from different parts of the globe.
Australian Acupuncture Association
American Society of Acupuncturists
Covid-19 Resources