I’ve thought a lot about how I can write this post as it is so important, yet so many elements of the early days of my CFS are a blur, a time of mental and physical exhaustion. Then I reflected that it doesn’t need to be perfect and things may be slightly out of order but the fact is I used and still use all of these tools to be well.
I have written previously about new research into CFS and wanted to emphasize that CFS is a spectrum condition with different ranges of severity which vary person to person and day to day.
Even for those on the low end of the spectrum (where I would place myself), life will be dramatically changed forever. Those with acute CFS are often unable to leave bed and have no choice but to stop working.
I call it my recovery recipe because for anyone suffering from CFS what works for one person may not work for you. Our physiology is unique and CFS is multi-dimensional affecting everyone differently.
My recovery was about rebuilding mind and body, it was as much about understanding how I had managed to reach beyond my tipping point as it was about putting myself back together.
Healing is an active and internal process that included me looking at my body and mind, my attitudes, beliefs, and memories identifying negative patterns and working to release this and other trauma which had contributed to my burnout.
I didn’t feel like “me” for at least two years. Year one was the toughest, my blanket year, I pretty much disappeared from all social engagements. I was able to continue working with modified hours. Year two I emerged a little but still found life very difficult and exhausting. Year Three I turned the corner but I would say my “full” recovery took five years. Today I am in good health with some legacy challenges that I work on daily. I continue to maintain the changes I made all those years ago to support my health and wellbeing every single day.
I hope this helps in some small way. Experiment, build your team, ask questions, never give up hope.
Elements of my CFS recovery recipe
- Find a medical practitioner who treats CFS
- Food as medicine – Unloading to rebuild
- Boost your immune system – using supplements
- Sleep, Rest, Energy Envelope
- 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
- Look at your relationships
Find a medical practitioner who treats CFS
Easier said than done I know, I found my GP by searching for CFS conferences in Australia (where I was living) and looked at the speaker’s list. I figured if they spoke at a CFS conference they knew the condition was real. My GP was an integrated health practitioner blending east and western medicine to support his patients.
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.
Boost your immune system – use supplements
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, vitamin 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.
Sleep, Rest, Energy Envelope
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.
Energy envelope and energy credits– 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?
If it was a not so good day I would rest as much as I could. If it was an ok day I would allow myself to do a little bit more.
I found that if I gave myself credits to spend every day it made it easier for me to manage and conserve energy. I started the day with 20 credits if I used all 20 I would be exhausted so I had to figure out how much energy everything I did took from me and work out how to space out my energy across the day.
It took a while to refine it but it helped me to not overextend myself and if there was something I really wanted to attend at the weekend I had to make sure I had enough credit in reserve to allow me to do so. If not I stayed home.
This was my key, it changed my life and my recovery. 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.
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.
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 that I did before CFS. 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.
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 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.
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.
Look at your relationships
This one is tough to write about.
I was in a marriage that wasn’t making either of us happy. In fact, it was contributing to my ill health. CFS forced me to really look at all my relationships and decide which gave to me and which took from me.
My husband and I separated and ultimately divorced, we remain friends and both live individually happy lives. This was not easy, it was one of the toughest things I have ever had to do and was incredibly painful but I knew I would never recover if I kept living a lie. During this time, I also let some friendships go as we do outgrow people it is just hard to accept. If relationships aren’t giving you energy, they are taking energy from you.
Celebrate the small micro improvements they are extremely important. At one point I was unable to stand in the shower so 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.
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. Spend 5 minutes turning into the breath and learn a new mantra low and slow. Belly, diaphragm, chest enjoy each nourishing life-giving breath.
I found the cognitive changes much harder to deal with that the physical aspects of CFS. I had extremely bad 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 which 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.
If you think you may have CFS/ME please see below some resources that can provide you with information and contacts.
- UK – http://www.meassociation.org.uk/information-and-support-line/
- USA – https://www.cdc.gov/me-cfs/
- International – http://iacfsme.org/