When your chronic illness humbles you yet again
The setbacks to my writing plans and what I'm doing to stop them demoralising me and slowing momentum even further
I live with chronic pain and fatigue due to my stage 4 endometriosis that in spite of several surgeries and a hysterectomy continues to reside in my bowel and grow again everywhere else.
I know that this is a fluctuating disease and while I try my best to manage the effects, I am aware that I can’t really predict how I will feel day to day or week to week.
It still wreaks my head and motivation a lot when a new set of symptoms crop up.
This week, I have been knocked out by the apparent return of childhood travel sickness that cropped up while I was accompanying my daughter to her dance dress rehearsals on a short (distance and time) car journey last week.
It was bad at the time, but it has lingered through the week and I’ve been suffering with extreme nausea and bouts of intense intolerance to light, sound and general in person conversation.
There is never a great time to feel nauseous, but this is definitely a bad time.
Literally sick of this shit: when you are not going to meet your own writing deadlines again
I’m writing this post as somewhat of a vent; I am pissed off that illness is yet again getting in my way.
I’m also writing this to test out how I feel being back at my screen typing again.
I guess I am also writing this as some kind of self-accountability and a way to think out loud and process what I am going to do about this - how can I not let this new set of debilitating symptoms derail me further.
I know I need to take breaks - I have been. But I also know that if I take yet more breaks from my rewrites, I will be in the position of potentially facing another year of not publishing my first book.
That feels completely demoralising.
A deep breath and a continued effort to keep out of my own way: what must get done in the good less bad moments
Instead of crashing out (yes, I am continually influenced by my teen daughter’s chat), I am doubling down on what I am NOT going to spend my precious moments of focus on.
I have a busy couple of weeks coming up in terms of mum life (dance shows; school graduations; a birthday; a long-anticipated concert with my daughter; the school summer holidays), but I still want to ensure I write and show up for my ambitions too.
Therefore, there can be no using my energy to do chores or cook from scratch or worry about food shopping or anything else.
There can be no starting new projects (ahem YouTube reboot) or over-thinking what and when to post - now that I have tentatively restarted my social media channels after realising that I actually do need some form of verbal/visual communication and connection.
I also have to accept that these new symptoms could be a new baseline low; that also feels utterly terrifying - but instead of hoping for these to disappear, I have to think about what adaptations I need to make.
Adaptations that make my chronically ill mum life easier are not luxuries: repeat it with me
And here is the kicker - I have long been stuck in this hope/ful/less/ness loop of thinking I can manage my symptoms better without change - that I can get back to working ‘more’ by simply trying harder.
It is internalised (and sadly, from others) ableism that has made me view even simple adaptations - like online uber grocery orders or working from bed or even investing in a walking pad instead of trying to get outside to walk when that is too much - as luxuries.
They are not; they may cost a little more than me slogging around the house, to the shops, a ‘free’ walk - but not much more.
I’ve been so lost in hating myself for being too unwell to earn that I have tried to not spend anything on the things that would actually help me.
That is actually batshit. And deeply sad.
As I said, I’m writing this as a vent, as a pep-talk to myself, as a test; not only to show up for my writing while feeling worse, but to show up for myself in ways that might actually help.