The four years between then and now have not been a linear upward trajectory of recovery. There have been peaks and troughs – moments of despair and of elation – as I’ve moved forwards, wobbling as I go. The last four months or so, however, have been stable. Obviously, there’s been a blip or two along the way, but there’s mainly been consistency. While fatigue and pain remain my constant companions, they have been steadily consistent in their pestering; consistent in the demands they make on my time and my body. And, when you live with chronic illness, consistency is an absolute joy.
This period of consistency has inevitably thrown up questions: if this is my ‘new normal’, then what? My life has been carefully constructed around the restrictions imposed on it because of my illness, but if my ‘new normal’ gives me scope to do more, then what? What now?
This consistency has afforded me more time. It’s given me back my love of socialising; the ability to talk and laugh and dance until 3am; the energy to spend evenings curled up on the sofa, laughing while playing ridiculous games and drinking wine with friends. It’s given me more time to read, to write, to work, and more time to spend talking and laughing with my boys. It’s given me the enthusiasm to explore in the kitchen and cook different meals, and to do more bloody housework. All simple things, but simple things that add up to me rediscovering who I am without the filter of feeling so shit I can’t function; who I am without the permanent exhaustion, utter fatigue, and agony.
All that said, I’m almost afraid to enjoy it too much; worried that this is merely a good patch that will come to an end, frightened of how desperately sad I’ll be if it does. I’m afraid I’ll fully embrace this energy and enthusiasm, only for it to be snatched away once again, leaving me floundering with who I’m meant to be.
That risk is a risk I have to take though, and it’s one I’ll take with the wild abandon of someone who isn’t afraid that her body will turn on her at any minute. (Well, it’s one I’ll take with as much ‘wild abandon’ as it is possible to as I still deal with the fatigue and pain that seem determined to stick around.)
As tentatively as I took those first wobbly steps four years ago, I am tentatively learning how to walk on this new path; determined, once again, to make the most of finding my feet as I embrace the time – and energy – I’ve been gifted.