i can’t go on. i’ll go on.

samuel beckett

after i’d spent some time sinking down deep, right down to the bottom of the ocean, several years ago, i made a decision. i resolved to try to swim, or at least remain buoyant, for the time being.

back then i didn’t feel sufficiently courageous or integrated to dare to consider what “the time being” might entail. simple activities such as carrying on breathing and eating were so challenging that extraneous concerns were beyond me.

mostly that keeping on keeping on decision was based on caring about how people who cared about me felt, and not my own behalf. the whole period is hazy in my memory, like an out of focus silent black and white film viewed from a great distance. my only clear recollections involve small windows of bright light, colour, and clarity breaking through the cloud cover. i remember the ferocious protective love i experienced for the children who were dear to me. and i remember brief flashes of being intrigued by the world beyond my own existence; mini-breaks from self-obsessive nihilism.

specifically, i remember watching a documentary. today i have absolutely no idea what it was about. but i recall that at the time i was suddenly overtaken with curiosity regarding its subject matter. and that when i registered that i was engrossed in contemplating something outside my own miniscule universe, i thought there might be hope of better times ahead. from that point on i determined to act as if my being here mattered, despite my persisting conviction that it didn’t.

to my surprise those windows of clear colour and light gradually widened, and i slowly became more emotionally connected to the outside world. which is why, when i have episodes of sinking low nowadays, i favour the maxim “fake it till you make it”. (by fake it till you make it, i mean continue practising simple actions to do with keeping body together – things such as washing, tidying, and eating nutritious food – continue to do those things despite the fact that your whole being rebels against them. when consumed with lowness these actions don’t only feel counter-intuitive; they feel like a body blow insult to our overwhelmingly destructive drives). if anyone had advised me to fake it till i made it when i was younger, i would have balked at the notion and felt misunderstood. but time has told me that it works.

the public disbelief and lack of understanding of my illness continue to be capable of knocking me off my feet. and when i’ve reason to suspect that someone who truly matters to me might think ME is not a real physical disease, i am still crushed. these are times when i need to re watch the film “unrest”, or to connect with jennifer brea and her supporters on social media.

scent can transport us to another time of our life in a split second. more than a decade and a half later, i am still intermittently haunted by the bitter, chalky reek on my skin and in my nostrils of an overdose after coming off a twenty-four hour antidotal drip at the hospital in brighton. and, as an unexpected side effect of stopping smoking, my already extra strong sense of smell became temporarily overwhelming. everything stank, even supposedly pleasant aromas. i was brushing my teeth when that re-stench of overdose hit me full frontally, and for a moment i was back in the royal sussex hospital, debating my possible demise with a doctor and nurse.

these days i’m mostly managing to keep my head above water. i’m not exactly swimming – that would require energy i don’t have access to right now – but at least i am not drowning. hey, you on the shoreline: do you see me waving?

whenever i feel blue, i start breathing again.

l frank baum

i have recently acquired a wonderful new piece of kit which is making a great positive difference to minor but nonetheless significantly uncomfortable and preoccupying symptoms.

for several years i’ve experienced a condition with an amusing name – it is called euston tube station malfunction, or eustachian tube dysfunction, or something along those lines (geddit?). it means that the passages connecting my nose and ears get bunged up, and that air bubbles press against my eardrums, causing moderate hearing loss. in more recent years i’ve also had adjacent overall mucousy congestion, sinus headaches, clogged nostrils and so on – suffice to say, i’ve been blockaded on all sides.

a couple of weeks ago, when perusing the internet in search of home remedies for these ailments, i discovered an odd little pottery item which resembles a miniature gravy boat with an elongated spout. you put warm salienated water into it, press the opening of the spout against one nostril, and tip your head into a horizontal position. rather miraculously, the salt water you pour up one nostril drips more or less simultaneously out of your other nostril. magic! even more magically, i am now a lot less phlegm bound and blocked up than i’ve been in years.

it goes without saying that there are many far more disabling symptoms which i’d much prefer to conquer than those aforementioned cold-like ones. however, one of the lessons that long-term illness has taught me is to celebrate small mercies. to be grateful for each battle won, no matter how tiny.

we are so endlessly goal oriented that we forget to bask in a temporary sense of achievement when we get to cross one small accomplishment off our to-do list. rather than wallow for a while in well-done-ness, we rush with impatience headlong straight onto the next as yet undone task.

so i’m taking a bit of time to celebrate my chance discovery of such a beneficial tool. i am  counting my blessings.