My story started out at the ripe age of 15. I was a 6'4” (very tall) state level basketball player and at that age, all that mattered was winning basketball games and being the best (another high achiever). I was struck down with Glandular fever, and it lingered on for nine months. At that time I was training 14 times a week, skipping school time to go to the gym and really pushing myself whilst growing. To survive, I would take two days a week off school – sleep all day and then play my big game of basketball on a Friday night.
One night on the court I didn't feel right at all. It felt like my body was breaking down – like it had over the past few months – but this was much more severe. It felt like every time I went to run, my body would shut down. My mind kept telling me to push through, so I did and eventually collapsed. I went to bed that night completely done. I thought it may be a fever or a flu; I will rest up and be okay. The next morning when I woke, I opened my eyes and mentally went to get out of bed. Unfortunately my body didn't follow. My body just would not move an inch. All I could do was scream for help.
After months of tests and doctor appointments and sleeping 16-18 hours a day, I was eventually diagnosed with ME/CFS. I was gutted. My dream was basketball and I couldn't even walk for 10 seconds without having to stop and rest. I thought my life was over. Like many, I went through it all. Why me? This is unfair. I can't believe this. I was victim for a good part of a year. Who could blame me? I was 16, in the prime of my life and the carpet was pulled from under my feet. I lost my identity; I lost what I thought was important in life and didn't know how to live.
Yep, I wanted to leave this world. The pain, muscle deterioration, the swollen glands, sore throats, headaches – it was horrible. I think there is a statistic that says 90% of ME/CFS sufferers have had suicidal thoughts whilst dealing with ME/CFS. Not a nice statistic but a very real one for many. Funnily enough, 10 years later I can barely remember how bad the suffering was. Because my life is great now, I tend not dwell on the bad stuff, and treat suffering as a blessing in disguise.
At 17, I was told to do year 12 (high school last year) over three years because I was so sick. I had lost 20 kg from my 90 kg frame. I was so skinny I had to wear four jumpers to school to look normal and feel okay. I had to give up my state basketball dream and practically stayed at home. I got the record for missing the most days at school in one year – it was something like 240 days.
Then I did a four-week inpatient program at a hospital, which was the starting point of realising maybe I can get better over time. It was more of a rehab program that got me moving slowly but surely and taught me about structure, rest and routine.
I was on a quest to keep improving. Eventually after trying so many things one doctor told me I was cured by his treatment after 20 sessions. I didn't feel any different but I believed him. I asked, what should I do now? He said go and do whatever. Because I love sport and missed it dearly I wanted to run. So I went and got my runners on and went to go for a run. I lasted a whole three minutes and I collapsed on the side of the path and was bed bound for a week.
Then and there I realised ONLY I WAS TO FIX MYSELF. No one but me can get myself better. That day everything changed. I took responsibility for everything. I set up a plan to stick to. With my routine, my mind-set, my nutrition, my bed times, my daily structure and rest. I was like a man possessed. I started on the bare minimum and rebuilt my health week by week with many setbacks.
I read so many self-help books and did a lot of self-development through my recovery. A lot of it was trial and error. As I started to improve I started writing down what worked and what didn't.
One day, I was walking down the street feeling sorry for myself, going why me? As I was walking a man in a wheel chair went by me and smiled at me. He was disabled and had no arms and one leg. My life stopped. How can I be angry and upset when this man doesn't get a choice to stand up or use his arms again? I looked back at him and he looked at me again and smiled. That day I went home and wrote down everything I was grateful for. It started with my arms and legs, even though I could barely use them, I was lucky I had them.
From there I worked day in day out to improve my health. I saw a few different health coaches for help and guidance but this time it was more about learning things I could implement myself. It helped.
I started making progress and I thought wow this is amazing; so many other people need this. I remember letting a group on Facebook know that I was improving and I remember saying, “It is possible to get better from ME/CFS. I am.” They literally said they were going to sue me for outrageous claims and that what I had wasn't real and that I was worthless etc. etc. I was completely heart broken and cried myself to sleep.
From that day I completely got rid of any negativity in my life. I stopped searching for stuff online because most of it was negative.
I ended up passing year 12 by four points below a fail. However it was a celebration as I completed it in one year, much to my teachers shock. I went for four hours a week and didn't study at all as I had little energy.
There was something in my body that said to me I was going to do something amazing with my life after this illness. I remember writing down on a piece of paper that although right now this is the hardest thing I have ever had to go through in my life, I also know it has taught me things about myself that I would never learn otherwise and that one day I was going help millions of people around the world…. That is exactly what I wrote at the age of 17.
After finishing school I kept progressing with setbacks here and there and kept track of what was and wasn't working. I had a very strong belief that I was going to get better. And that I did. There was no magic pill. Just a lot of hard work with working on health fundamentals and improving what wasn't working.
As I improved, I knew this is what I had to do – give back and shine the light for others – that it is possible to get your life back. At the age of 18, I used all my savings ($400) to pay for a crappy website with my story on it as I was so passionate to share positive stories with others.. It got five hits in the first year and two emails. I just wanted to show others it was possible to. At the same time I dressed up in my dad’s suit and knocked on doctors’ doors and called clinics to help them help others with their patients. Many laughed and said come back in five years. (Five years on, now some of those doctors refer patients to our clinic and program).
I began working in the health industry and built up my experience through health and well-being coaching. Eventually a client had been diagnosed with ME/CFS and came to me for a chat about my experience. I said let's work together for 12 weeks and see if we can change it for the better. That we did. Within 12 weeks, he went from bed bound to running for his country in Europe. I couldn't believe how well he progressed. He was stoked and I had that burning passion born inside me to keep going.
From there, word of mouth spread and one client became two and so on. So much so that I quit my full time job and started solely focusing on ME/CFS work. I founded the CFS Heath Centre – a clinic dedicated to supporting and helping those with ME/CFS. At the time I was writing a book. Even though I failed English I didn't care. If you can overcome ME/CFS, you can do anything I say. It took two years but it got published and is now in bookstores across Australia and available world-wide. It is called Chronic Fatigue Syndrome a Guide to Recovery. My English teacher couldn't believe it.
My life has been very amazing post-ME/CFS. I don't take life for granted. I was so passionate about ME/CFS I probably worked a little too obsessively early on, however, I am a lot more balanced these days. I have never been one to really stop as I believe there is always more to be done with supporting people on their journey. However, it’s quite amazing to reflect on the achievements of a boy who lost four years of his life but gained way more years in wisdom and blessings; a boy who lost everything but gained more; a boy who was told he was never going to get better or do anything great in life.
It gives me much joy to connect with thousands of people all around the world and to inspire them to reach better health. The online program which was developed last year supports people in 17 countries so far and the centre here in Melbourne has had patients fly from UK, USA and all around Australia to seek help. With life there must be balance and I enjoy surfing, relaxing with family and friends, growing vegetables and cooking. I love sharing my own suffering and problems to help find solutions for others in their own life. Life isn't always roses but embracing the hard times as a reflection of good times to come, it can get easier.
I am blessed to have amazing staff. The amazing part of this story is all my staff suffered ME/CFS, recovered from it through my program and are now fully qualified CFS health coaches here in Melbourne, Australia. If that isn't evidence you can get better then I don't know what is.
Recovery is a process, one that takes time and dedication. There is no magic cure, however there are certain things that I have seen to be important to recovery:
Taking responsibly for yourself and your health;
Accepting your current situation and circumstances in order to change them for the better (acceptance is not resignation);
Focusing on health holistically. Sleep, nutrition, restorative movement, mind-set and stress and anxiety management are very beneficial on a deeper level.
And it’s important to remember that no two stories are the same. If you want to learn more about my story you can visit my website (link below).
About the Author: Toby Morrison is the Founder of CFS health – A resource dedicated to helping people with M.E/CFS & Fibromyalgia with treatment and recovery from these conditions. He has a CFS health centre in Melbourne Australia and a world wide online recovery program which is helping people in over 24 countries. For more information you can go to www.cfshealth.com and follow his FB page www.facebook.com/tobymorrisoncfs