I have had to come up with a plan to reclaim some sort of life. In other words, I’ve had to find a way of making sure my day-to-day experience is not trumped by pervasive rubbish feelings. In terms of carrying out this plan, I am both excellent and shit.
On excellent days:
I am just about able to let my thoughts overpower the pain that engulfs me. This happens about 17% of the time. For example, if I see a really beautiful flower, I force myself to immerse myself in that moment, more deeply than I ever would have before getting ill; I acknowledge that I feel rubbish, but I do not permit those feelings to triumph over the beauty I that perceive. Likewise, if I'm meeting friends for a coffee, I inject myself fully into that experience, and try to amplify every single opportunity for enjoyment. I focus on what I am lucky enough to be able to see, as if I have a degenerative eye condition (I don't, but that doesn't preclude my radically appreciating my sight); from my friend Angela's giant green eyes, to Dave's gurning fizzog as he learns that a Snapchat story has no textual basis.
In her memoir Late Fragments, Kate Gross, who, on discovering she had stage four colon cancer, decided to write a book instructing her young sons on how to truly appreciate life, insists that as illness takes from us, we can take from it. Nothing I’ve read has resonated more. Difficult as it is, and it really, really bloody is, I do believe that everyone has the resources within them to reclaim and regather as illness strips them bare. The ratio of taking to losing may be heavily skewed in favour of the illness, but I find if I can concentrate what little energy I have on something I like, I make sure I savour it much more than I would have done before. Ergo what I choose to take is the ability to be properly present, properly here. And if I feel so crap that my pain and/or fatigue wins, I’ll embellish the moment in memory (nice one, Victor Frankl**). In other words, and I know this is colossally dissociative, when I recall doing something pleasant, I simply deny the fact that I felt any discomfort at the time; this last year may have been tough, but I have a host of distilled, unfettered memories that illness - in spite of its vile ubiquity - can't touch.
On shit days:
I simply forget to be in the present. I'm busy getting lost in the scary future, or the traumatic past, or the current pain. It is very rare that I spontaneously remember to just be, to solely inhabit the present moment, and quieten the incessant thoughts. I focus almost exclusively on the pain. I wince at the acrid twattery that my sanctimonious self is capable of spouting (see above NB not Kate Gross’ bit as she’s great). I complain. I look on Instagram and end up hating everybody but mostly myself, then Twitter. I root around the news to look for people in worse situations than me and end up hating the world. I complain. I hate myself for complaining. I cancel coffee with my friend. So there.
All things considered, I am very lucky. This illness, whatever it is, won't kill me. I am still hopeful that it will eventually pass, or that doctors will make a link with some elusive goblin of a disorder and offer me some treatment. What keeps me going is the notion that I might one day be able to take what I've learned into 'real life,' that I will immerse myself so fully in a moment and feel an absence of pain, to boot. But if that doesn't happen, then an aggressive commitment to savouring moments, as well as retrospectively fancifying them, is enough, on good days at least. And sometimes I’m just crap at it all. And that’s sort of ok.
These are the random paths that chronic illness have led me down; expect silliness and deep reflection in equal measure. Impaired health can bring pain, despair, uncertainty and a bit of unexpected joy; seek solace here if you crave some light relief from campaigning/suffering.