“Never, never give up hope that you can make progress towards your goal of recovery”

Prior to getting sick, I worked for housing trust supporting men with mental health problems.
 It was a really interesting job and I enjoyed working with the residents.

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Simon Pimenta

I had a busy social life; I was physically and socially active. I played football, tennis, I swam, cycled.


Before the illness

I did have the tendency to burn the candle at both ends. There were times in the morning when I had to get up for work where I’d hit the snooze button four or five times. I was tired because I wasn’t getting enough sleep. I’d often not get to bed before midnight – I seem to be resistant to going to bed.

I was a bit of a hedonist. I remember going on holiday with some friends down to Cornwall. It was a great holiday. We’d be doing all sorts of activities during the day learning to surf, horse riding, archery. At midnight when my friends were saying “let’s go to bed.” I wanted to keep going because I still wanted to have more fun.

Also, I wasn’t very good at saying no, and that got me into all sorts of trouble because that resulted in me tiring myself out at times. I was quite an anxious person, and I worried a lot about what other people thought.

I wasn’t very good at saying no, and I worried a lot about what other people thought.

So these lifestyle factors weren’t helpful and they did probably contribute to me getting sick at times. However, generally I was pretty healthy.

I took on more responsibilities at work – I became the director of a housing trust, which was a pretty stressful job.

Missing out: Eight years of illness

Over a period of three years my health deteriorated. I started feeling constantly tired and needing early nights. I would get ear infections a lot. I started noticing that I would feel really bad after eating sugary foods, or having alcohol. After a while I had to stop drinking because I noticed that it made me feel awful.

Over a period of three years my health deteriorated.

I remember one summer evening, I’d been to the gym a few hours earlier and I was sitting in the garden with my girlfriend and her sister. They were in t-shirts, and I felt really cold and drained. Going to the gym normally boosted my energy.

I remember going to see my acupuncturist, and she was telling me that my body was in a state of stress and that I needed to make changes to my life. 
Unfortunately, I wasn’t imaginative enough to actually do something drastic.

I should have quit my job and gone and laid on a beach for three months. In November 1997 I went off sick from work. I kept expecting myself to feel better after a few days. I kept trying to go back to work, but after a while I just had to give up. I said to myself that I would go back to work when I’ve had a week of feeling normal.

I didn’t feel normal again for eight years.
 


I was eventually given a diagnosis of chronic fatigue syndrome (CFS) and I suffered from fibromyalgia. My Doctor said that she didn’t use the term ME when diagnosing people, but that I matched the diagnostic criteria for ME.

I missed out on loads of things like my brother’s birthday and many other family occasions. I missed going to Lion King with my daughter when she was about 12 years old. I felt that in life was passing me by. There was a lack of progress. 

There were times when all I did was eat breakfast, lunch, dinner and sleep, sometimes close to 18 hours a day.

There were times when all I did was eat breakfast, lunch, dinner and sleep, sometimes close to 18 hours a day.

Doctors didn’t have solutions. No one could help.  Many people didn’t understand that it was a real physical condition. People were saying to me: “It’s all in your head.”  Or: “You’re doing it all wrong. People do recover by taking Prozac.”

My body seemed very sensitive

My body seemed very sensitive to food, exercise, excitement and stress. I couldn’t even watch TV. There were times I couldn’t even walk for one minute. 

I did lots of things to try to recover my health: I changed my diet. I did juicing. I started doing meditation, gentle physical activity, including yoga. I spent lots of money on lots of treatments:

I saw nutritionists and took supplements

I saw a Medical Doctor trained in Functional Medicine. He identified candida, leaky gut syndrome and adrenal fatigue. I made dietary changes and took supplements. I noticed a difference, and I was able to tolerate exercise, but I still wasn’t well.

I tried Cognitive Behavioural Therapy, which was helpful to a degree but it didn’t give me the results that I wanted.


What I learned

I kept researching the condition and eventually found answers that made sense to me.

What I learned from the research I did was that:
 


1. A Combination of Factors – Stress Being a Key One, Can Make People Sick
I believe that the stressful job, on top of those lifestyle factors that I mentioned, in combination resulted in me developing ME/CFS.

2. Ongoing Stress Can Keep Us Sick
I recognise now that when I had ME/CFS I was generating a lot of stress. Being in fight or flight mode stops the body from:

3. Dealing With the Stress Can Make a Profound Difference
In 2005, I discovered an approach called the Lightning Process, that made sense to me. It embraced the above concepts and recognised that this condition was real, but explored whether the mind can influence the body.
It helped me understand why I got stuck.

I learned tools that helped me move forward. It wasn’t plain sailing.
I had to work really hard to apply the tools. It definitely played a massive part in my journey. There were some tweaks that I made to make it work for me and there were some other concepts that I utilised to help me move forward. I tripped up at times, as I sometimes tended to overdo things and still had hedonist tendencies.

A combination of factors – stress being a key one, can make people sick. Ongoing stress can keep us sick. Dealing with the stress can make a profound difference.

Recovery

However, finally things started to change for the better. I started feeling better and had more energy. People noticed difference in me. 

I was able to spend the whole day at my sister’s wedding, even singing in front of everyone. Admittedly everyone was drunk by that point, but prior to learning the techniques that made these changes possible, just the thought of standing up in front of people playing guitar and singing would have left me exhausted.

I found that I could tolerate increased levels of activity. I went from not being able to walk for one minute at times to being able to cycle hard doing an hour of circuits on my bike in the park, playing tennis and and badminton for hours.

I started a training course to become a hypnotherapist and coach and started working again full time when I completed the course.It has been a brilliant experience. I’ve met and worked with many people coming to the clinic from all over the world.

I remember my first client in a wheelchair, who was from Norway.

I remember my first client in a wheelchair, who was from Norway. This client was a physiotherapist. She had been using a wheelchair for a year.  Incredible as this sounds, on the second day she walked into the clinic. The following weekend she went to a cabin in the mountains for the first time in two years and went skiing for 15 minutes. For her that was a massive shift. 
She lived in Bergen, where there had been an epidemic of people diagnosed with ME/chronic fatigue syndrome, because the water was polluted in 2004.

I ended up going to Norway nine times in the space of a year.

She contacted me saying lots of people wanted me to come to Norway. So I ended up going to Norway nine times in the space of a year, training people in Bergen and Oslo. I was contacted by a doctor and a high flying psychiatrist who were interested to meet me, as they had seen first hand the results of me working with them.

I continue to work with people with ME/CFS, teaching mind/body skills.

I did have a mishap 5 years ago – a physical issue, which required a number of surgical procedures, and I have been having some issues recently as a result of a mistake made during one of the surgeries, so at the moment I can’t exercise at the same level I was doing. However, life is still great.  I get out of bed each day eager to do the work I do, enjoying all the good things that life has to offer and appreciating the simple pleasures that were not available to me during the 8 years of having the condition.

So never, never give up hope that you can make progress towards your goal of recovery!


This post was written in April 2019. Simon Pimenta works as a coach for people with ME diagnosis. He also talks about his story in this interview:

AdultsMaleSevere ME/CFSME/CFSFibromyalgiaLightning processCognitive behavioral therapyOther methods

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