Life After Chronic Fatigue Syndrome
What is life like after CFS recovery?
I had chronic fatigue syndrome for about 2 years, and during my recovery process I took herbal medicines and nutritional supplements to help me heal. I also required specific diet and lifestyle practices and graded exercise therapy to recover, along with amazing support from my naturopaths at Endeavour College, and Toby Morrison at CFS Health. I have created videos about my personal journey and recovery that you can watch here.
My life now is full, healthy and normal!
Some examples of the things I can do now, that were simply a fantasy during my illness:
I play netball, go to the gym and walk my very active red heeler, Jolly. I actually play Centre in netball, which means I run more than anyone else on the team - and I feel amazing afterward! My first game back at netball was a special moment for me because this was the one thing that seemed IMPOSSIBLE while I was unwell. I'd had moments where I literally couldn't get my legs to run, and even the smallest exertion was exhausting. Playing sport again is magic, and something I never want to take for granted.
I have held full time jobs and hospitality jobs (do not recommend!) as well as running my own business. As a makeup artist, I often have to get up very early or drive long distances to get on location to prep bridal parties. This can often involve driving up to 2 hours, working on my feet for 6-8 hours without a break, then driving up to 2 hours home again. I usually feel tired after these jobs, because it's a big day for anyone! But I recover normally and feel fine afterwards. When I did makeup jobs while I was unwell, I managed to push myself to do it but would be completely wiped out for days afterwards. Now I can just get up the next day and go again.
I do lots of long distance driving. In the past I had to catch a bus if I was travelling a long distance, because I would get too fatigued driving for hours on end.
I have a really beautiful relationship now. This just wouldn't have been realistic while I was unwell. I had such terrible brain fog and such low physical energy that I didn't have much to give anybody. I would get drained from catching up with a friend or driving 20 minutes into town. Now, I can just focus on nurturing my relationship and the other things that are important in my life, because my health doesn't have to be my number one priority all the time like it was back then.
Of course, I do get tired sometimes. Normal people do. I'll get tired if I have a late night or a long day, but I recover normally and forget all about it by the next day. I don't get tired from normal activities like working, having conversations or going for a walk. I enjoy a few wines with my beloved or my friends, and I can go out dancing til late if I want to without it having any real effect on my health or causing symptoms like pain, aches and brain fog.
Can you recover from chronic fatigue?
Yes. It won't go away on its own so you do need the right support, advice and actions to get there. I truly believe anyone can improve their health and significantly, if not completely, recover from CFS.
What do you do to maintain health after recovering from chronic fatigue?
Nothing! At least, nothing particular to keep the CFS away. I am a naturopath so of course, I take herbs, nutrients and superfoods regularly and try to eat well and exercise. Of course these things all contribute, and I look after my health concerns as they pop up but in general, I'm really healthy and don't really get sick or have ongoing health problems.
I did many things during my recovery to overcome the CFS, but there is nothing I need to take or do now to not have chronic fatigue. It's gone. That's how you know you've really healed something. If you don't take any medications or supplements and just live your life normally, do you still have that illness? For me, the answer is no.
What are the lingering health problems after CFS?
I will say that my energy is a nurture point for me now, meaning that if I did get sick or run down (very rare for me), I would probably get tired as the main symptom. The other thing that happens for me if I'm out of balance is that my skin will break out. My skin has been a nurture point from a very young age. We all have something that we are prone to experience when we get sick - for some people, it's insomnia, for others it's tummy upsets, for others it's cold and flu symptoms. For me, it is my skin, and now my energy. I never had energy issues before chronic fatigue, so I do believe I have some lingering mitochondrial damage or something that I could work on, but I don't experience any issues on a daily basis, and even if I did get sick, the fatigue is not on the same debilitating level as when I had CFS.
I also could work on improving my fitness - although it is pretty normal, I'm not as fit as I was when I was 18-19 and in the gym all the time, so I'm working on building that back up. That's not really directly because of CFS though, it's more because I don't workout as much now. Part of the reason is due to the way my thought patterns have been affected by CFS.
The biggest thing that I've clung onto since having CFS, is a subconscious belief that I am limited and can't push myself to work hard. I consciously know this isn't true (especially given all the examples above of times I have worked hard since recovering) but I've realised that often my behaviours reflect a fear of hard work, discipline and ultimately, burn out. It's just things like sleeping extra if I feel like it, having more breaks from work if I want to or scaling back my workout if I don't feel like running today.
The reason I got sick in the first place is because I worked very hard at uni, had a really ridiculous class timetable with late nights and early mornings, was extremely stressed and heartbroken, had no money, was grieving, and pretty much just pushed and pushed til my body said no. Even at the point when I was barely functioning due to glandular fever, I dragged myself to uni every day and pulled my assignments out of whatever brain cells were still working because it was my final semester and I felt I didn't have much choice. The reality is, pushing through that 6 months cost me my health and freedom for the next 2 years of my life. In recovering, I had to learn to NOT push my body, as every time I did set me further back. I got really good at this, and I got better. But now, I still hold back sometimes when I don't need to.
I do know it is extremely important for me to have balance, and to not push myself in a ridiculous way. Society and its systems are really set up in a way that most people are highly stressed so I certainly don't believe in meeting those standards, but a certain amount of stress and hard work is healthy. I do want to create more structure in my life as I believe having a certain amount of structure and boundaries actually enables freedom and flexibility. I'm personally trying to finetune what the right amount of structure and routine is, so I can achieve my goals and not feel scattered.
In figuring this out, I have become aware I have a really deep fear of going back to that hopeless place. When I talk about it or explain to people what CFS was like for me, I can often feel the tears rising up and welling in my eyes because I do remember how it felt and I feel so sad for what younger Amy was going through. My body has physically moved on, but I'm still carrying something with me emotionally, mentally and/or energetically.
How do you overcome mental limitations and subconscious beliefs after recovering from a chronic illness?
I'm currently working on releasing this, mainly using hypnotherapy. We operate from our subconscious mind 95% of the time, but subconscious beliefs are almost impossible to change without going into hypnosis. My hypnotherapist, Melissa Hogan, guides me through visualisations and replacing thought patterns while in a hypnotic state. I back up this work with affirmations and journalling to help me identify and process the specifics of these mental patterns, and rewire what I can consciously. I'm also taking Australian bush flower essences specific for releasing these fears and unhelpful patterns.