Sophie’s ME/CFS Journey

It all started by spending a week in bed with a bad dose of flu over Christmas, followed by three more weeks off work.

After that I only managed afternoons at work and had to sleep and rest all evening and weekend. A few times I had to go for a sleep in the car during the day.

One day I felt better than in ages and did a bit too much. I couldn’t make it into work the next day and spent most of the next three weeks at home.

My arms and legs ached pretty much constantly, my knees and elbow joints were painful, and at times it could be challenging to find a position comfortable enough to sleep in. I slept every afternoon and if I did too much, physical or mental, I’d get exhausted and the shutters would come down on my brain. It was quite disconcerting being unable to think.

I bought a shower stool as I would often wake up feeling reasonable, but was exhausted by the time I’d had a shower and got dressed. I brought everything I wanted for the day downstairs in the morning, so I only had to tackle the stairs once each day. I also bought a bar stool for the kitchen, so I could sit down and prepare food and stir the cooking. Most of the time I either slept or just sat with a book, though it had to be something easy to read. It was all about coping and getting through from one day to the next. I found it all extremely frustrating being unwell, I’d always been so independent.

A few people told me they knew of people who had developed ME after they had flu, so I asked two doctors about ME, but both were dismissive and didn’t tell me anything, they just kept signing me off for a week at a time. Finally, I saw a different doctor who mentioned it could be ME / chronic fatigue but she still couldn’t help much more than telling me to pace myself, which was almost impossible after I had been used to being really busy.

My Mum knew of three people who had ME and found things had changed for them after doing the Energy Excellence Course so she sent me the web address. When I looked at the website I found it quite emotional, I could relate to so many of the symptoms and struggles described in their experiences and Amir’s talk rang so true for me.

I had reached the point where I was facing the fact that I could be ill for years, or may never get well just by pacing myself, so now was very excited to hear how other people had found things had changed for them, in a matter of weeks.

“I started to notice improvements by the second day of the course, and walked a few hundred yards along the seafront, not far, but further than I had walked for a long time, and without my ‘old woman shuffle’ that had developed while I was ill!”

Within a week, I had booked onto the course. I so wanted to get well again before my life really fell apart, but I also feared it may not work for me. One of the things I’d found really difficult was when I had to ring work each day and say I was still not well enough to come in, I felt so guilty, so I told only my family, close friends and my boss about the course, so that people didn’t have huge expectations.

I started to notice improvements by the second day of the course, and walked a few hundred yards along the seafront, not far, but further than I had walked for a long time, and without my ‘old woman shuffle’ that had developed while I was ill!

On the third morning I generally felt better and a few people commented that I was looking better, I didn’t need a sleep in the afternoon and was able to walk and climb stairs normally. I gradually increased my hours at work over the next six weeks until I could do a full week’s work again.

Also, just one month after the course I was able to do so much more outside of work, like go to the supermarket, walk into town and go shopping, cycle a few miles, swim ten lengths. I also enjoyed cooking and eating again, and was able to do chores around the house like washing and vacuuming. I felt interested in life again!

It is so exciting feeling this much better after being so ill. Many people have commented on how well I look now, and really, I feel more like myself than I have for a long time, perhaps ever.

I have learnt a lot from the Energy Excellence Course, not just tools I still use for pacing myself, but a lot about my general well-being.

I really encourage anyone suffering from fatigue to do the Energy Excellence Course, I have recommended it to a number of people and hope that Amir and Aliya will continue to run it for a long time in order to help many more people.