It’s time to call a spade a spade. I’m experiencing a relapse. My first relapse since 2011.
There have been countless Flares and Crashes and Setbacks. Hours. Days. Weeks. Months.
But relapses, as I define them (and as my CFS/ME clinic defined them) are where there is a dramatic decline and a return to the most severe and restricted time that does not ease after several weeks. It’s a return to the most severe and restricted time that differs from a bad patch lasting a few weeks. I’m almost two months in with minimal change.
This is a relapse.
That bastard clinic (sorry Mum!) told me I’d only ever have one relapse, and for some reason I half believed them and clung on to that – I’d already had my relapse in 2011, perhaps the only way was up and to plateau…
Along with the physical and cognitive restrictions placed upon me, this is incredibly distressing. For my family to see this happening again, for my husband to witness it for more than a week or two, is very hard on them. My spirits remain mostly okay. But to be back in the depths of this when those were the very worst and hardest years of my life is not ideal.
So my new ‘buzz words’ are Acknowledge, Accept, Adapt.
Acknowledge that this is really happening. It’s not just a dodgy few weeks. It’s apparent that it’s the real deal. Admitting that helps me to stop kidding myself that perhaps, just perhaps, I’ll wake up back to ‘my normal’ tomorrow.
Accept that things aren’t going to be as easy or how I’d like them to be for awhile yet.
Adapt by asking for and accepting more help than usual. Dig out all the old survival tools (the bowl to brush my teeth in from bed, cut off a good 5 inches of my lovely hair to manage the weight of it better, eat out of bowls rather than off plates, remove as much external pressure and stress as possible, share the load of care between my husband and my parents…)
So here I start again, from the beginning. Only this time I have 10 years of experience under my belt. And depending on what day it is that’s either a huge comfort or no comfort whatsoever.