Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME) is slowly emerging into the light with the tireless work of campaigners, the release of the Netflix documentary UnRest and the new #missingmillions campaign.
When I was diagnosed in 2011 there was little information available, and more importantly little information on recovery.
CFS is a spectrum condition with different levels of severity which vary person to person and day to day.
Even for those low on the spectrum (where I place myself), life will be dramatically changed forever.
The more I talk about my experience and life with CFS the more I meet others who have had and who have recovered from CFS. Until recently it wasn’t something anyone talked about. Why? Partly because of the trauma of living with CFS, where your life can change overnight and also because it is not well understood.
I share my tools for recovery, what I have found works for me through years of trial and error.
Acupuncture was my key, it unlocked something for me that allowed me to gain energy and finally start to return to full health.
I used acupuncture alongside all of the other tools I list below.
Recovery is an active internal process, I had to look at all of me, my beliefs, memories, relationships, my way of being, how was I living my life to allow me to fully start my recovery.
Build your team, ask questions, try different modalities, never give up hope.
My Chronic Fatigue Recovery Recipe
1. Find a medical practitioner who understands and treats CFS
2. Food as Medicine – Unloading to rebuild
3. Boost your immune system – using supplements
4. Sleep, rest, energy envelope
6. Reducing the toxic load
7. Acceptance of the new normal – speak to a psychologist
8. Communication and support from your employer
9. Look at your relationships
13. Learn to listen, be gentle – it takes time
FIND A MEDICAL PRACTITIONER WHO TREATS CFS
It’s hard I understand, I found my GP (after kissing a few frogs) 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
I didn’t know it before but 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, most never to return (yes the coffee came back). 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. Today I work with a herbalist to ensure I keep a healthy balance and I understand on a much deeper level what my body needs.
SLEEP, REST, ENERGY ENVELOPE
Sleep is essential, it is how the body repairs itself. The challenge with CFS is that when you sleep you often wake up just as exhausted as when you when to bed. It’s often felt like plugging in overnight and waking up with a 5% battery.
This is why rest is so important. 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.
Your 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.
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.
It is important to have a connection with your acupuncturist, you are a team, in this together. If after your first session or two it doesn’t feel like you are connecting try someone else, get recommendations. It is an important relationship to build, trust your instincts.
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.
This also really helps to find words to speak to friends and family whose support is essential.
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
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 ever 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 for long 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. I had no idea 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.
LEARN TO LISTEN, BE GENTLE IT TAKES TIME
I view myself as recovered from CFS but my life will be forever altered.
I continue to use these tools every day and have my daily rituals which allow me to maintain good health. Despite being told that it was unlikely I would recover I simply refused to believe this, I kept telling myself I can figure this out.
I learned to trust myself, listen to my intuition and dance in tune with my body and mind, checking in with it to see what it needed.
You are uniquely you, it takes time to work out what will work for your body, your mind but through time you will work it out.
It’s not easy. It takes time. Never give up hope. Small Steps Every Day.
If you think you may have CFS/ME please see below some resources that can provide you with information and contacts.
· USA – https://www.cdc.gov/me-cfs/
· International – http://iacfsme.org/
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