Any given day is not instantly marked as Bad because of the symptoms I might experience.
At any given time, if asked what my symptoms were, I would struggle to list them. In order to get the hell on with life, I have had to normalise them in my mind. It’s not been an exact science. There is still fear when the feeling of mild pins and needles appears in my legs, because that can be a sign a bout of paralysis is coming. And the feeling of swelling behind my right eye has never, ever been anything other than scary.
But on the whole, I have really managed to come to terms with the fact that the symptoms I experience each day, are my Normal. Some symptoms are actually quite amusing! The majority are just plain baffling! One boiling hot foot and one that’s so cold it burns?! How?!
And so on the days where I am too exhausted to wobble further than bed to bathroom, I still wouldn’t say that that fact makes it a Bad day. Healthwise, sure, it may well be on The Anna Scale of things. Yet today I’ve had a text from my cousin. And I’ve messaged a friend. My husband is safe at home with me during ‘lockdown’. The sun is shining. I have an internet connection which means I can look at social media even if I can’t engage fully with it today. My husband will likely wash my hair for me later. The house is quiet (our neighbours must be out!) There is lasagne for tea. For me, for the version of myself that I am today, I wonder how those things can make it into anything other than a Good or Nice day.
I have noticed recently that some people assume I, or another chronically ill person, cannot possibly be happy in a life dominated by illness. But your perspective shifts when you’re in the thick of it. It has to if you’re to find any joy and contentment in life when the things that made you who you were have gone.
So many people are defined by their productivity, something that’s not helped by a society that places more value on a person’s abilities than on their kindness, for example. I was too. The loss of identity I can still feel, because I defined myself by what I could do, almost ten years in can be enormous. But if I defined myself in terms of productiveness all of the time (and I do some days) my life would be miserable. My self-esteem would be non-existent.
In addition, I still believe I AM being productive, just not in a conventional sense. Even though I have no choice in the matter at all, being in bed and resting IS productive in my eyes. It in impossible to push through and get up and dressed and do any of the things that need doing or that I’d like to do. Impossible. And so what good would it do me to lay here wishing for something different than what I’ve been handed today. In resting, my energy stores are slowly replenishing. That’s going to help me digest food easier for the first time in a few days. It’s going to help the symptoms related to exhaustion (the blurred vision, nausea, inability to read or walk or breathe easily) to calm down a little. What’s not productive about that?! Your mindset shifts. You come to celebrate and view things as wonderful achievements; things that you’d once not even registered as being ‘things’ at all.
Posts from over the years that touch on this a little , and sometimes show how my perspective is ever-changing: Better than yesterday, worse than tomorrow, Human Being vs Human Doing, Setback Survival, The Fear, Sink or Swim