The 'One Step Forward, Two Steps Back' Dance of ME/CFS

Before falling ill, I was very much what you might classify as a high achiever who didn’t know how to say no. I was working full-time, studying (sometimes even full-time or overloaded) at the same time and visiting the gym most weekdays and occasionally weekends. My husband and I would participate in Rogaine events regularly (a sport a bit like orienteering which involves hiking for up to 12 hours in a day to find checkpoints) and were relatively active in all our other activities as well.

That all changed in March 2013. All of a sudden I had constant high levels of pain, absolutely no energy and couldn’t focus or concentrate for longer than 15 minutes at a time. For the first two months I did attempt to continue working and occasionally visit the gym, but this only led to an increase in symptoms, and I really wasn’t useful to anyone at all.

Since then I’ve been on leave. That’s almost two years off work! I’ve seen many doctors, specialists and alternative health professionals and have tried many different drugs and techniques to try and improve my health. It took over nine months to finally get my diagnoses – pelvic congestion syndrome, fibromyalgia and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Even after being diagnosed, the doctors have not been able to do much to help. The treatment options for pelvic congestion syndrome either make me sicker or are too extreme to consider at this point in time, and both fibromyalgia and ME/CFS have no known causes or cures. The thing that has helped the most in reducing my symptoms to a manageable level is pacing. It’s a difficult technique to get right and even now, almost two years into my illness, I don’t always do things right, or my body may decide to do something completely unexpected which interrupts my normal pacing.

Life with these conditions, particularly ME/CFS, is like being in a constant dance where you move one step closer to the life you want to be leading, but then your partner, ME/CFS, takes you two steps back and away from your goal. I have had more than my fair share of ups and downs since becoming ill — some of them bigger than others.

At times it feels like I’m making significant progress and my dreams look ever closer. Then ME/CFS decides I’ve gone far enough and decides to take those two steps back, or sometimes even more, and all those dreams begin to fade again into something that may happen in the distant future but may also never be possible.

All I can do is continue to dance one step forward and two steps back, and remain positive that at some stage the sequence of steps will reverse and I’ll be able to go two steps forward for every one step back.