As the gravity of the crash dawned on me, I could feel my heart breaking; I realised how much damage I had done, and what it was going to take to claw my way out of the black hole.
Despite my improved health, my body can still be fragile and sometimes needs to be handled with extra care. And returning from Japan was one of those times: long-haul travel is tough on the body, and jet lag messes even with the strongest of bodies. But unfortunately, on the week we got back from Japan I was not able to dispense the dosage of care I required – circumstances outside of my control (or they felt outside of my control) meant instead of taking it easy, I ended up doing too much. I knew I was pushing, but I didn’t know what else to do; I didn’t know how to say no.
I told myself I would be okay, I would just do what I needed to do and then rest for a couple of days. I couldn’t have been more wrong. I have been mostly horizontal for four weeks: it is the biggest CFS related crash I have had for at least a couple of years.
At first I was in denial that my body could be so broken again – I thought I had worked hard enough on recovery and that my health was now strong and resilient, that it would never arrive back here. I was devastated – how could everything change so quickly? How could I go from swanning around Tokyo to being plastered to the sofa? From doing circuit training four times a week, to wondering if I could manage a shower? From planning my next steps into the writing world, to it taking a week and a half to write one blog post?
But once I got over the shock and accepted where I was it became easier. I had a very clear mission: to listen to my body and take as much rest as it needed to get back on track. Plans were cancelled, writing commitments were rescheduled, and trainers were hidden at the back of the wardrobe. My strategy was to take one day at a time, make each day as lovely as possible, and be kind to myself and my body.
It has been hard – the hardest few weeks for some time. I have been incredibly isolated: there was a two-week period when Mike was only here for one night (although sometimes it is easier to be on your own and have total control over how you use your limited energy), and I haven’t been well enough to see my friends.
I have tried to have a small walk each day to keep the cabin fever at bay. And walking along the canal is soul medicine at this time of year, with the fluffy chicks to ‘ooh’ and ‘aah’ at. And there is a Starbucks about ten minutes along the canal, and it’s amazing how five minutes banter with my favourite Barista can lift my day when the isolation is all-encompassing.
I have found it difficult to talk about how hard it has been, fixing my brave, positive demeanor in position. People are busy and their lives are carrying on at the same fast pace around me. I am living in a parallel universe and my sense of reality is so alien to anything they can imagine; maybe you only truly understand if you have been here yourself. And it’s boring isn’t it? Who hasn’t heard the ‘Karen is having a bad patch’ story? Yawn. Yawn. (Maybe I should be pressing delete about this point!)
But I have somehow managed to hold it together. I have tapped into my inner strength and determination, to keep my mind positive and my spirits up. And I have not gone down the ‘poor me’ road. How can I when I know that there are people who are far worse off than me? If anything, it has reminded me how lucky I am to not be this ill all the time.
Inevitably though I keep going over what I could have done differently to have prevented this crash. I don’t regret Japan: it was an amazing trip and my health was perfectly normal whilst we were there. And to be honest I don’t think Japan is the real issue here – I think if I’d had more control over my time when I got back this crash wouldn’t have happened. Perhaps I would have handled things differently if I’d known the price was going to be four weeks on the sofa. I don’t know, life isn’t always that simple.
I think the black cloud of fatigue is starting to lift. We went to lunch at the weekend with some friends, giving me a much-needed break from the sofa, and a small taste of the life I have been missing, a life I can’t wait to get back to. Maybe I am being naive, but I expect to come out of this crash soon and be as well as I was in Japan. And that is what’s keeping me going, knowing what is possible.
And the lesson – because there has to be one! – is after all these years, I am still useless at listening to my body. Honestly, how hard is this to grasp woman? Maybe this time I will finally get it. Maybe.
Oh, and I’m sorry if I was your poster girl for recovery, this must be almost as heartbreaking for you to read. But don’t panic… I am on my way back to a wall near you!