My Chronic Fatigue Recovery (After 4yrs Sick)
I never thought that I would be writing this post. After 4.5 years suffering from chronic fatigue, here I am recovered, hiking, running, playing with kids, going out on adventures all day, sleeping all night, and free from pain. I am so incredibly grateful for my life and my body. There were many times that I thought the real me was gone forever and I would never find her again. But she’s back!
Disclaimer: I am sharing this story as inspiration for those who are looking to recover from CFS/ME (or other recoverable chronic illnesses). I am aware that my CFS was not severe and that I have been unbelievably fortunate to have access to support and funds to help me along the way. This post does not intend to contain any judgement for anyone who is suffering from chronic illness. Everyone’s journey into illness (and potentially out of it) is different. It is not my intention to profit from people who are suffering from a chronic illness. I am not a CFS recovery coach. I had my business before I experienced CFS. I have been writing since 2009, creating meditations since 2010, and working as a counsellor/psychologist since 2011. There are many great CFS recovery programs and support people out there, and I encourage people to find a support system that they resonate with. When I got serious about recovering, I found recovery stories SO inspiring and motivating. They gave me life… hope… drive to do whatever it would take. My intention with this post is to provide hope and inspiration to those who find themselves seeking out recovery stories. If you feel triggered or distressed, please stop reading and seek support.
It started with Epstein-Barr Virus (EBV), commonly known as Glandular Fever. In 2018/19 I had a chronic EBV infection that didn’t clear up for close to a year. Read my story about how I recovered here. I finally got on top of the virus, but I had several symptoms that lingered and became Chronic Fatigue Syndrome (CFS).
My CFS symptoms were: throat pain, swollen glands, sleep disturbances, joint pain, low energy, muscle pain, sinus/ear/eye pain, brain fog, and crushing fatigue despite adequate rest. These symptoms would come on randomly without notice and were impossible to predict.
At first, I tried to track my symptoms, energy expenditure, food intake, and sleep. Many people with CFS do this in an attempt to manage energy and predict fatigue crashes. I had some moderate success, but sometimes I would be okay for 2 weeks, even when I had been quite active (with restraint), and other times I would have a bad fatigue crash from very little exertion. There was no rhyme or reason to it, but I clutched to the belief that I could predict how I would feel so that I had some sense of control.
My life got smaller.
Rest became my existence.
Prior to my EBV infection and post-viral fatigue, I had been energetic, active, motivated, and committed to completing tasks. All of those traits were still inside of me, but my body wouldn’t allow me to be ME anymore. I would think of things I wanted to achieve, and never find the energy to achieve them. I would look at jobs that needed completing around my home, and have no choice but to leave them undone. I would drive past the trailheads for some of my favourite hikes, and hold back tears because I didn’t know whether I would ever get to visit them again.
Instead of playing with my young daughter, I would have to lay down and sleep. When fatigue would strike… talking was hard and moving was impossible. All I could do was nothing.
As much as my reality was often unbearable, I found a way to keep going every day. I stayed home, while my husband took our daughter to her friend’s birthday parties, I rested every afternoon instead of working, the housework piled up, and I tried by best to participate in life even though I usually felt tired/sore/depressed. I got used to sitting and watching activities rather than participating in them, I would find a chair to sit on while everyone else stood and chatted, and I would watch my family play through the window from my bed.
Years went by. Covid hit. My stress skyrocketed. CFS is considered an autoimmune condition which put me in the high-risk category. Every day I thought I was going to die.
I had to reassess my work (as many people with chronic illnesses do). I scaled back clients, stopped creating content, I took an unfulfilling part-time job to supplement my income, and eventually, I decided that I wanted a change. My life has slowed down so much that I had time and space to think about what I truly wanted. I decided to study psychology part-time.
My YouTube Channel, Insight Timer publishing schedule, and social media ground to a halt. I refocused on studying at a slow and steady pace. This usually consisted of: uni work in the morning, and rest in the afternoon. I found a rhythm that worked for me.
Along the way, I tried ALL THE THINGS to reduce my fatigue, increase my energy, and potentially recover. Read my EBV recovery post to see what I tried during the first year and what did and didn’t work. Here are some of the things that I tried while I was still sick.
SUPPLEMENTS
I tried SO many different supplements over the years. I have made a conscious choice not to list them all because I honestly think that supplements are a trap (and often a waste of money). I did come across a few that helped a small amount with managing symptoms, but overall, no supplement helped me recover fully. When I got serious about recovering, I gave up all of my supplements, and I still don’t take any.
MEDITATION / VISUALISATION
As you may know from my EBV recovery journey, meditation helped me a lot. At the very least, meditating provided me with a sense of agency and control. But I do believe that visualising myself without fatigue helped me to maintain hope that I could recover one day. My favourite practices were
Tuning Into Your Quantum Potential by Caroline Stewart
A New Path Of Light by Arielle Hecht
I can’t say that mediation healed me, but it helped me to maintain positivity and calm while I was suffering from CFS, and helped me to stay focused while I was recovering.
THERAPY
This is a big one. Probably the biggest. Without it, I would not have been in the most optimal state for recovery. I have a great deal of childhood trauma, I am a survivor of child sexual abuse, rape (as a child and adult), and have been highly dysregulated since I was 4 years old. I was shamed/blamed so much as a child that I had become an expert at shaming myself.
Therapy has helped me to overcome so much over the years. The majority of my therapy was related to trauma and abuse, which provided me with a stronger foundation to let go of my chronic hypervigilant state. I also had many sessions focussed on coping with having fatigue which helped to manage strong emotions that would come up, particularly sadness and frustration.
The techniques that worked for me were EFT (Emotional Freedom Techniques) and IFS (Internal Family Systems). During this time, I asserted boundaries with toxic people in my life, and experienced so many benefits including greater resilience, feeling more peaceful, and letting go of many unhelpful beliefs about myself. Therapy did not heal my CFS in and of itself, however, I feel that, without it, I would not have been ready to recover.
DIET CHANGES
I know that plenty of people have good success with diet changes, and I’m genuinely happy for them. I think it’s worth trying to see if any improvements can be found through refining food intake. For me personally, diet changes have never had any impact. Zero. Nada. It was the same with my EBV recovery. I’m not going into what I tried because, at the end of the day, nothing changed my symptoms or helped me recover.
SUPPORT GROUPS
Support groups have their time and place. They can be a great way to feel like you’re not alone in your experience, get ideas for symptom management techniques to try, and simply feel validated and accepted. One of the biggest problems that people with “invisible” chronic illnesses face is that others don’t believe/understand that you’re unwell. The biggest perpetrators of disbelief in my experience were my own family (as is the case for many CFS sufferers). There’s an assumption that one day you’ll wake up and just get over it. Living with CFS is hard enough, let alone losing your closest friendships and family relationships along the way. Another common assumption is “You’ve brought this on yourself,” and “If you just did yxz, you’d recover.” Classic spiritual bypassing and victim-blaming.
The groups are a respectful space for you to talk about your struggles and gain support and acknowledgement without judgement from people who don’t get it. As much as I needed these groups for my sanity in the early days, in order to recover, it was essential to get out. These spaces are about managing chronic illness, not recovery.
NERVOUS SYSTEM SELF-EDUCATION
Most people with chronic illness seek out answers to the question “Why?” We want to understand how we ended up in this situation and make some meaning of it. There is a lot of great info out there these days about repairing your nervous system and making sense of how it can become dysregulated. I started watching free videos by Jessica Maguire, Irene Lyon, and Peter Levine about the connections between trauma, illness, stress, sleep, and how it all impacts your nervous system.
I completed Jessica Maguire’s Vagus Nerve program and implemented many of her techniques, but unfortunately, it did not lead to any improvement in symptoms. I was glad to have a deeper understanding of how and why my nervous system had been in overdrive for most of my life, but I did find that a lot of the content was quite depressing and felt kind of like a life sentence. I still find Jessica’s content very informative, but I’ve taken a step back from Irene Lyon as she is heavily focused on selling her program, therefore the majority of her free content is about problems rather than solutions. I’ve also needed a break from Peter Levine as I find his writing/videos is too fluffy and not concrete enough to be used in a helpful way.
I also read Decode Your Fatigue by Alex Howard, which is essentially just an advert for his Optimal Health Clinic program. I didn’t sign up for his program, but I loved reading recovery stories so much. I kept hunting them out everywhere I could after this.
COLD-WATER EXPOSURE
Prior to getting serious about recovery, I did 12 months of cold-water therapy including daily cold showers and twice weekly cold swims (except for midwinter). I can definitely attest to the invigoration of cold water immersion, however, it didn’t have any lasting impact on my energy levels or frequency of fatigue.
The Pivot To Recovery
In October 2022 I spent a drizzly day putting plants into a new garden bed. I paced myself, rested throughout, and did most of it sitting down, but unfortunately, off the back of this activity, I ended up in a month-long fatigue crash. It was my worst crash yet. I was crying constantly from pain, I could hardly talk, and all of my movements were as if I were moving in slow motion. Something inside of me snapped. I decided that I didn’t want to live with CFS anymore.
I wanted to be someone who had recovered.
I had heard of a few random people who had recovered, but it was not the majority. To me, they seemed lucky… privileged… totally unrelatable. I knew that it was humanly possible to recover, but I had no idea what to do or where to start. Here are all the things that I did once I made the decision that I would recover:
SEEK OUT RECOVERY STORIES
Almost immediately I started reading blog posts like this one, watching YouTube videos, and listening to podcasts sharing recovery stories. I completely stopped consumption of any other content and switched 100% to CFS recovery content. Two channels were pivotal for me were The Chronic Comeback and Raelan Agle. Both of them interview people who have recovered from chronic illness using a variety of methods. Every single journey is completely different and presents new ideas about how recovery might be possible. It was inspiring.
Every day I became more and more convinced that recovery wasn’t just for a few lucky ones, and that I could get there too. Most of the interviewees now work in the recovery space which opens up a door to find someone that you resonate with to support your recovery journey if you choose to. I would have liked to see a few more regular folks, and not just people profiteering from their recovery… BUT… honestly, I was looking for some help with my journey so I was grateful to have so many options open up to me. This led me to choose a recovery coach.
SPECIALISED SUPPORT
I took a hiatus from my regular therapy and pivoted to working with a CFS recovery coach. I chose someone that I found on a YouTube recovery video. They helped me to dismantle some fundamental beliefs that were keeping me psychologically stuck. Talking to a support person who understands what you have been going through is EVERYTHING. I only had a few sessions but I did all of my homework, and rapidly felt the burden of CFS lifting, even though I still had fatigue at that point.
RECOVERY PROGRAM
From my research into recovery stories, I started to notice people mention a few different programs over and over again. I settled on 4 different options to choose from ranging from online courses, to group therapy, to live workshops, and audio practices. I didn’t decide right away. I explored all of their YouTube content and looked at reviews and recovery stories from people who had completed the programs. I also factored in the amount of content to cover, the time commitment, and the cost.
I did all of this research on my own, and I later realised that Liz Carlson (who also has a great recovery-focused YouTube channel) created a guide that collates feedback, pros/cons, and detailed information about what you get in 25 recovery programs. If I was starting from scratch, I’d start by reviewing her guide rather than doing all the groundwork myself.
After about 4 weeks of research, free discovery calls, and deliberating about which program to choose, I decided to go with the Lightning Process. I made this decision for a few reasons,
1) It’s completed in 3 days and doesn’t require watching hours of videos (quick),
2) the price is very reasonable compared to many of the longer programs (value), and
3) I had heard enough success stories (some with overnight healing taking place) to know that the prospects of recovery were good (efficacy).
I completed a 3-day training in person which consisted mostly of psychoeducation and a small amount of practical, somatic techniques. It’s weird, I’m not going to lie. It’s not for everyone, but it definitely worked wonders for me. Watch my in-depth, critical review of the Lightning Process program including the screening interview.
I completed all of my homework, journaling, and somatic techniques as instructed in the training. And, even though I recovered within weeks of completing the LP training, I don’t attribute my recovery to this alone. I did a huge amount of groundwork and research to get myself to a place where I believed recovery was possible. Also, my years of trauma therapy ensured that I was not going to repeat the same patterns that got me sick in the first place.
Soon after completing the LP, I prioritised my health above everything else. I got serious about changing everything and rewiring my entire existence so that nothing was on autopilot anymore.
TRAUMA RELEASE EXERCISE (TRE)
I had heard about TRE for releasing trauma stored in the body. I knew I needed something like it. I had healed and soothed so much of the trauma in my past and changed my habits and beliefs as a result, but I still felt so physically stuck. In researching TRE I found Liz Tenuto (AKA The Workout Witch) and I resonated with her free content on Instagram about stored trauma and its related symptoms. I bought her Free Your Hips course prior to completing the LP but I didn’t have time to start it until the weeks afterwards.
Follow this link to the course to receive a 10% discount
I did the exercises every day, and for the first 2 weeks, I would lie there, thinking it was stupid. The movements were so small and minimal, I kept thinking “How can this do anything at all?!” But I kept going with it even though I honestly thought it was pointless… And then on day 16, I started shaking uncontrollably all over my body and I didn’t stop for about 10 minutes. I didn’t feel scared or distressed. I was completely calm, and afterwards, I felt good.
I had learned from watching TRE videos on YouTube that shaking is an effective way of releasing stored trauma. I’ve continued many of the TRE exercises, and sometimes I get big releases and sometimes I don’t. After completing the course I had access to more energy, felt lighter, and recovered within a few weeks. Like I said before, I don’t attribute my recovery to one particular thing. TRE just happened to come along at the right time for me to support the other work that I was doing.
CHANGING EVERYTHING
This principle is taught in the Lightning Process, but also by many other experts on brain retraining (Rick Hanson, Joe Dispenza). Essentially, trying to change one thing (fatigue) while in the same habits and the same neurology as you have been for ages can make it very difficult for your body to actually change. Because your body and mind prefer what is familiar, it will do everything in its power to come back to the way it has always been. You might have experienced this when trying to introduce a new eating or exercise habit… after a short time of success, you slip back into old patterns.
Changing everything can help with this because the body is wiring new neurology for many things at once rather than just one thing. I gave it a go. I swapped sides of the bed and bathroom with my husband, I altered where and how I got dressed each day, I sat in different chairs, prepared food in a different way, used my non-dominant hand to make tea, I started saying yes to things that I would normally decline, and I switched up my night time routine, my vocabulary, my conduct, and I even got a weird a-symmetrical haircut. When I committed to this, change was rapid. It was as if my body/mind forgot how to have fatigue.
GOAL ACHIEVEMENT AND RECONDITIONING
As I started to notice that I had longer periods of time without experiencing fatigue and I became more skilled in shifting out of fatigue using the Lightning Process, I started to explore what was possible for me. After years of staying at home most of the time, walking at a very slow pace, constantly looking for a chair to sit on, leaving chores undone, and avoiding strenuous activities, I reached a place where I could actually do things! Cleaning was a thrill. Carrying the washing from the laundry to the back of the house was exciting. Picking up kid’s toys off the floor made me laugh with joy.
When I had CFS, EVERYTHING I did created stress, worry, and fear of a fatigue crash. Bending down to pick things up was one of my biggest stressors.
One of the goals I set for myself during my recovery was to be able to “charge up a hill”, meaning that I wanted to be able to walk up my steep street at a spritely pace. All of a sudden, I could do it. Then within days, I could do it pushing a 12-kilo toddler in a pram. My next goal was to take the kids out to a theme park for the whole day, another thing that I was able to do within a few weeks of feeling better. Only a few months prior, I struggled through a full day at Australia Zoo. I walked with a slow shuffle, had pain all over my body, and I was constantly looking for places to lie down. I was working with my coach at that point so I had prepared for it, but it was still so difficult. In comparison, taking 2 kids around Movieworld for the day without the support of my husband was easy.
My biggest goal that I had held for over 4 years was to be able to hike again. Living in the Gold Coast hinterland with CFS was torture for me. All I wanted to do was to get out into that beautiful wilderness, and I couldn’t! I got myself a cheap pair of second-hand hiking shoes and dug out my old backpack. I started off small with 3-4km mostly flat loop tracks. Afterwards, my feet would be aching and I couldn’t move for an hour or two - totally different from fatigue, this was exhaustion from exercise! Then I built up to 6-8km and I stayed at this level for about 6 months. Each hike I did expanded my stamina and strength. My recovery time after each hike reduced too. Within 8 months of recovery, I was hiking 15km trails with ease. This was a total dream come true.
I was very aware of how deconditioned my body had become, so I slowly eased myself back into exercise and am still in the process of building up my strength.
Looking Back
As I’m writing this, It’s been about 6 months since I started to feel better. I still have things to work on, trauma to unravel, stress to reduce, and strength to build, but… I’m a completely different person from who I was a year ago. It’s been 12 months since that fatigue crash that started my journey, and I’m exactly where I want to be.
Looking back, I can see that I was lucky. Even though CFS dominated my life, I wasn’t bed-bound or even totally house-bound. I was still able to drive my kids to school, do a load of washing from time to time, and attend low-key events if my husband drove and carried all of our stuff. I even (somehow) had a pregnancy and baby in the middle of it all.
All of my memories of things I did during the time I was unwell are clouded with pain and struggle. Whenever I now go to a place that I went to when I had fatigue, I get flashes of how difficult it was for me the last time I was there. I have visceral memories of the numbness, heaviness, pain, and weakness. And now… I can walk, I can stand, I can think, I can carry stuff, and I can drive there without help and with a toddler in tow!
I hope that you found something helpful to support you on your journey in this post. I have so much more to share but this is enough for now. If I had to boil down everything I’ve learned from my journey into some steps to follow, it would be these 3:
Decide and commit to recovery. Don’t wait for a miracle (like I spent years doing).
Get support. Both CFS focussed and general therapy are important and helpful.
Follow what works for you. Everyone’s journey is different.
Sending so much love to you,
Naomi