on disability & disappointments

I am trying to build a baseline for care rn, pls be gentle UwU

I’ve touched on this on social media quite a bit, and I’ve talked about it in the newsletter but there are quite a lot of updates I have, as someone who is chronically online and trying to be as transparent as possible. It’s strange because I’ve never known a life where social media and the internet didn’t exist. I’m sure it was brief, but as someone who lived in a town much further away than many of my friends (and also had working parents,) the internet was my connection to the outside world.

Some of my very first best friends were people I met online— while we don’t talk on a regular basis like we did decades ago, I still keep tabs on them through Instagram. Even though it was 20 odd years ago, I still remember sneaking on the landline to call my friends long-distance and being yelled at when the charges came through in the telecom bill that month. The dial-up tone and time it took to get online served as a background for meditation. Over the years, I’ve met many of my online friends off-screen, forging some of the happiest and memorable relationships I’ve had in my life. Some of these were also very painful, but up and downs are part of the human experience. I think one day I’ll probably elaborate further and maybe make a continuation of this post as a throwback to the one I made a decade ago covering the same topic— though I talk about meeting my then-partner, now-spouse in it. All of this to really tell you that I’m actually not in a place to exist as chronically online anymore.

Since turning 30, I’ve grappled with the concept of aging and even more so, my health. I realise I do not have many spoons to hold a traditional in-person job anymore— if I push myself too much, my body feels it and will likely push my stress, which exacerbates the inflammation cycles. The work I do right now is peer-to-peer and donation-based because I simply don’t have the spoons to focus on income. I am lucky enough to have a supportive spouse and family, and to come from money and means. I know my privilege and I’m happy I have it, because it also means I have decent healthcare and can make my health my number one priority. (Like I probably should have been doing years ago, but carpe diem, I was invincible in my 20’s.)

Showing up means doing the best that I can, and I’ve done so and will continue to do so. Unfortunately, with all my limitations— that means I won’t meet everyone’s expectations and I’m coming to peace with that. Right now, my baseline is relatively low and limited. I am tending to myself and my body in ways I didn’t before, and I’m more thankful for it. Many of my days are filled with the support and comfort of loved ones, rest, and lots of treats. It means that I can’t commit to a lot, and I actually want to share a lot less because I’m processing my feelings as a person with disabilities and what that looks like. There are many plans, collaborations, future goals and dreams that are put on hold at the moment. I am so thankful for those who have stayed in my life, or remain in mine in some way, shape or form.

I am not sure what lies ahead, but I do know I need to be more intentional about the way I utilise my screen time. Some of symptoms prevent me from looking at screens for too long, and I’m often (at my worst) sitting in a hot bath or in bed with a heating pad, sleeping or meditating. Isn’t it strange how when you tend to yourself, a lot of your spirituality and values tend to bloom alongside your own development? I’ll put out whatever I can when I can. I’m trying to be more mindful and reflective, and that does lead to a lot of writing, but it means in measured, even doses. It means maybe shitposting wherever I want in small doses, and then saving the big stuff in one fell swoop. Or the opposite. The possibilities are endless but my energy is not.

I don’t know what comes next because I’m still trying to get through today.

I am someone coping with my mortality and limitations in real time, please allow me grace.

I have a good health team (or I’m at least, building one) and support system in place. This is also an urging from me to you that PLEASE find a good primary care provider, one that you can rely on. Tend to your health.