Recovery from Chronic Fatigue Syndrome IS possible

I lay in the hospital bed listening to the doctor tell my dad and I that I had Chronic Fatigue Syndrome and Fibromyalgia, and I felt that life as I knew it had ended.

During my two years bedridden with these terrible illnesses, I came to believe that my diagnosis was a life sentence and that I was going to have to learn to live with it because it wasn’t going away. After all, isn’t that what the word ‘chronic’ means?

This was terribly difficult for me to grapple with. All my hopes and dreams came crashing down. CFS/Fibro brought with it a great deal of loss. Loss of my hopes and dreams yes, but also loss of independence, loss of ability to care for myself, loss of the things I enjoyed doing, a loss of daily functioning, loss of my job, losses to relationships as they no longer looked the way they used to, not to mention the loss of physical and cognitive functioning, and much more. For two years I couldn’t even get out of bed to close or open the curtains, or pick up my pen off the floor. I was dependent on my family and friends. Going from an active, busy, type A lifestyle to this, was a shock to the system, and brought with it a great deal of grief. It was a year before I finally came to accept what had happened to me.

But the thought of being like this for the rest of my life… I was only 21. It was horrible.

Until one day, something clicked.

I was watching a video by CFS Health coach Toby Morrison, and he was talking about taking charge of your life and doing what you can to get better. He said that it was possible to recover from CFS.

Recovery stories held mixed emotions for me back then. I didn’t like them. In the first place, there was grief because I ‘knew’ that would never be me. But then, I couldn’t really consider the possibility that it could be me because I had so resigned myself to living with chronic illness forever. In the second place, and this is difficult to talk about in chronic illness circles, there is a sense that chronic illness almost became my identity. I say almost because I did really try to prevent it from becoming so. But I reached place where I couldn’t really imagine my life without it, and so in a way, recovery felt like another huge loss, another huge change, another major shift. I felt like I couldn’t deal with that, especially since it had taken me so long to adjust to being sick, even though it would mean the loss of something horrible and the gain of something wonderful.

But after two years of being bedridden, two years of living in the same room and the same bed, and three and a half of being chronically ill, I had had enough. I was so throughly traumatised by what I had been through, that the thought of spending another year bedridden terrified me. I don’t know whether it was my sympathetic flight response kicking into gear, but I just wanted to get the heck out of there. So when I heard Toby say that I could recover but it required me to take charge of my life, I was ready. I decided that I would do whatever it took to get well.

I was so over doctors and anything medical by that point but I agreed to let Mum take me to one more – a naturopath further up the Yarra Valley. I was reluctant. I was prepared for his treatment not to work like all the others we’d tried before. I listened to the song ‘Even If’ by Mercy Me over and over.

The naturopath told me to write a break up letter to my crutch and plan an outing for autum. I thought, there is no way I’m going to be well enough to go on an outing like what we were planning in autum. It was three months away. But lo and behold, come autum, I was no longer sick enough to be bedridden! I will be forever indebted to him for doing for me what no other medical professional could do – get me up out of that bed!

This was a major turning point, but it wasn’t full recovery. As I look back, I realise that many of the things my parents and I had done to help me in the past, weren’t useless just because they didn’t give us the results we wanted. They were all actually a piece of the puzzle, and all of these things worked together to help me improve, like fixing my sleep, changing my diet, and getting rid of infections.

My recovery journey continued after I got unbedridden too. I took over from my parents, took charge of my own health and life, and started doing everything I could to rebuild health in my body. I fixed my diet. I developed healthy sleep habits. I started going for walks regularly to get some movement happening. I went to therapy to process the trauma and heal the mental health issues caused by what I’d been through. I rethought a lot of the things I believed and ways I had been living and patterns I had been stuck in that had contributed to my illness and kept me sick. Things like perfectionism, performance living, and constantly pushing myself and overdoing it. Beliefs like “self-care is selfish” and “rest is lazy” needed to go because they were not true and were hurting me. I continued to figure out pacing and struggled to overcome my tendency to push myself and overdo it (I’m still not an expert, trust me). Basically I just built new healthy habits into my life and did them consistently over a period of time, and eventually they added up and I improved.

I did have setbacks. I had a major crash after I arrived home after spending four months in Montenegro due to my majorly overdoing it while I was there, but that was a catalyst for more healing and recovery work. Now I don’t even remember the last time I crashed and I no longer get PEM. Since that is the case, I don’t think I can any longer consider myself to have Chronic Fatigue Syndrome!

I am now working four days a week as a disability support worker and cleaner. I am running a coaching business. I have a social life. I’m a historical re-enactor. I foster bunnies through a rabbit rescue. And best of all, I recently got accepted into my dream University Bachelor of Arts course! Life actually is good at last, and the future is bright.

I put together everything I’ve learnt throughout my years recovering from Chronic Fatigue Syndrome into a 3 month coaching program because I want to give hope to all of you who are still struggling and suffering with this ghastly illness. I want you to know that recovery IS possible for YOU. Not just for the person down the street, but YOU. Actually YOU! It just takes the right approach, doing the right things at the right time consistently, and taking one step at a time, and slowly but surely it adds up. As the saying goes, little by little one travels far. I am proof of it. That is why I write these blog posts. That is why I do what I do.

So please, if you are struggling, suffering, hurting because of Chronic Fatigue Syndrome, take heart. All is not lost. This is not the end of your life or your story. It is only the begining of something much greater to come.

xx Cait