On Mondays, we feel inadequate.
We feel like a failure because we’re turning up at our “stop-gap” job yet again.
We feel like a failure because we didn’t get everything done we wanted to.
We feel like life is passing us by whilst we endlessly fail to achieve the changes we dream of.
My dream this weekend was to write, and work on my website.
But I get stuck often. I worry about my direction and get stuck in my head. It’s an autism thing. I paralyse myself with indecision, trying to find the right answer. I get lost in the minutiae of problem solving. It never feels like enough.
But by contrast, my comfort zones feel amazing. Against a messy and confusing world, finding what feels “right” and eases your anxieties is supremely valuable treasure. Whether it’s finally finding that safe food, or the new show with all the right things, the relief is even stronger compared to the crazy disorganised world of “normal life”.
When you’re raised undiagnosed, you don’t let yourself be comfortable.
Lack of respect for your disabilities mean your emotions are seen as an inconvenience. For me, being comfortable feels like a betrayal, like I’m not working hard enough.
I’m trying to get better every day, but it’s okay if you only get through the day. There’s another day after that, as long as you reach it. Only in this crisis I’m starting to see why that’s such a heroic act. Once you recover from an illness there is hope for your future, but if you die, then it’s over. Once you’re dead, all your chances are gone, even though it’s a natural part of life.
Ableism and death have an uncomfortably close relationship.
At some point illness becomes a disability, sick-leave becomes unemployment, unwell becomes frail, weak becomes vulnerable.
Once a person crosses that line it’s often the start of being written off by our ableist society and discussions about a life worth living. Despite technically being disabled, I’m physically healthy most of the time, until I’m struck down with a migraine.
My migraines fog my brain and turn me into a helpless shell. At those times, I’ve felt like I would die if the pain and fog continued any longer. When I finally come back to my life, gingerly, gently, tentatively, it’s like being gifted the world all over again.
Being able to exist in the world without my pain is a blessing.
Functioning “normally” suddenly feels like being super-human. In a way it makes me grateful. It makes me appreciate my life, but I wonder how much more I could achieve without losing these chunks of time.
Can I claim to have a chronic illness? Maybe, but it’s mild, so I’m very lucky.
When I’m healthy, I try hard to be productive and make up for the days that I’m wiped out and clinging to an ice pack.
I worry about how I would have coped in a world without coffee, or painkillers, or artificial heat. Without abandoning society, I’ll never know.
It’s okay to feel like you’re not doing enough or changing enough.
However, you’re probably are doing exactly what you need.
You’re just looking at the wrong target.
An elastic band stretched to maximum isn’t doing it’s best, because it will break. Humans are the same. Our little victories and small pleasures are what keep us going. Taking time out doesn’t make us inadequate or weak, it makes us stronger.
The delights and the good days aren’t holding us back at all.
Instead, they are the bits holding us together.
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