Fatigue can creep up on me when I’m least expecting it. When I feel I have enough energy to do a certain number of activities in one day (lots of planning involved so I don’t do too much), it can come along and just wipe me out. There’s no way of knowing how long it will stick around for either. Physical exhaustion is only half of it – the kind of tiredness where your whole body feels heavy and every step is a mammoth, painful effort. The emotional and mental side is equally tough. ‘Brain fog’ descends and it can be hard to concentrate, with simple tasks demanding more effort than usual.
Doing gentle exercise (walking) to reduce fatigue might seem counter-productive, but it has helped to strengthen my muscles and to improve my energy levels. Muscle wastage on my arms and legs has contributed to my fatigue so I’m tackling that through a combination of physiotherapy and walking. Pacing myself is easier said than done, but I am getting better at judging how much I can do each day. If it means resting during the day so that I can go out in the evening, that’s what I do. Better than going all-out one day, leading to sheer exhaustion and inability to get things done the next day. Although chronic fatigue is ever-present due to rheumatoid arthritis and Ehlers-Danlos Syndrome, rather than waiting for it to envelop me I am trying to minimise its impact as much as possible. Here’s how: gentle exercise, a healthier diet, plenty of sleep, planned (and fewer) activities, pain relief when it gets really bad, mindfulness to deal with stress, and saying no to things rather than overdoing it. Saying ‘no’ to things is the hardest part. It means I still go out with friends but maybe for a shorter time, allowing me to do more the next day rather than feel totally zonked out and not up to doing anything. Fatigue won’t stop me from achieving things: it may take me longer to get there but often the journey is just as important as the destination.