There’s a million things on the internet telling you how to cope with a chronic illness – ranging from the practical (try to get into a schedule), to the evangelical (gluten-free wholefoods only and meditate every day!) to the downright useless (stay positive!!!! Listen to music!!! Take ‘me’ time!!!).
I’ve really struggled on the coping front at many points of this illness. I think once I got over the initial shock of it, the fear of what it might be, and hit the depressing ‘nobody knows how to fix it and it could go on for a really long time’ realisation, well, that’s a pretty rough thing to get your head around.
Lately I’ve been struggling again. It’s cold, and I’ve been miserable/upset/frustrated/lonely and so on. And I still feel incredibly stuck – and the options I can rummage up for potentially getting unstuck aren’t necessarily ones I want to take or ones I feel particularly confident about at this point in time. Feelings, as vital as they are for experiencing the richness of life, can also be really exhausting. Sometimes it feels as though the fatigue and everything else is just crushing me, and I’m just a shell moving through the day trying to act normal.
But I guess I’m surviving. Not through any formal channels, textbook strategies or anything like that. But just the things I’ve found that help.
So, for me… coping is coffee.
Coping is watching TV episodes online 15 mins at a time because you are so tired your concentration keeps wandering.
Coping is planning one small thing for weekend days that makes you leave the flat so you get your aching muscles moving at least a bit and at least put on some kind of stretchy n0t-really-a-bra and some pants.
Coping is chipping away at something one piece at a time, painfully slowly, or crossing tiny things off a to-do list.
Coping is noticing how miserable you are and taking yourself out for a $20 breakfast even though you can’t afford it, just so you are surrounded by people you don’t know and are distracted, so you don’t end up spending the morning in tears about how terrible everything is.
Coping is saying yes to things you don’t really have the energy to do, even if there are consequences, just so you can feel normal for a few hours, or so you don’t stay at home sad with FOMO (fear of missing out).
Coping is taking a long hot shower to relax, which you know will make you dizzy and tired because of your autonomic dysfunction, and then falling asleep for an hour to recover from it.
Coping is slathering yourself in things that smell nice and make your skin soft, to try to make yourself feel better about the body that is betraying you.
Coping is holding on to furniture and walls to get ready in the morning, clinging on to the kitchen bench and having a standing microsleep while waiting for the toaster to pop, because you really have to do something that day even though your body really doesn’t want you to.
Coping is standing to take photos or run microphones at a work event because nobody else will do it, and even though you feel dizzy, headachey and gross, you’ve never actually fainted, so why make a fuss?
Coping is trying to not look at how big your credit card debt is when you login to internet banking.
Coping is quietly shoving the clothes that no longer fit into the darkest corner of the wardrobe, telling yourself you’ll sell them on eBay soon, when you get the energy.
Coping is answering questions from people at work events about your travel and career plans in a totally vague way that doesn’t let on that you don’t have anything planned because everything is so uncertain.
Coping is feeling for a brief moment that you have a handful of energy, looking around the house at the laundry and dishes, ignoring them, putting your headphones on and taking a 20 minute walk or doing your 10 minutes of pilates and stretches while listening to Beyonce instead.
Coping is spending several hundred dollars on supplements and probiotics, hoping they might help.
Coping is buying a $10 green juice, and hoping it might help.
Coping is buying kale, hoping it might help, then failing to cook it before it wilts.
Coping is trying to remember and keep going for all the things you wanted before, and trying to not think about how much harder it seems to get them now.
Coping is sometimes just sleeping, or lying in bed not really asleep, but without enough energy to do anything else.
Coping is Beyonce GIFs.
Coping is ignoring how much you wish there was someone there to hug you in the morning, when you wake up after 12 hours sleep feeling as though you haven’t slept at all.
Coping is sometimes not coping, then pulling it back together as best you can.
So yeah, I’m coping I guess, even though sometimes it is easier than other times.