blog

30.08.24 disability and sense of self

trying out something new with format for some (very) unorganised thoughts

trigger/content warning for chronic illness stuff

you know like. Focusing on the things that are hard can be dull and stressful, but god, I need to put this down in some way or another. I’m trying to untangle this from the feeling of upset but i think it will stay in some capacity unless I force an epiphany of some type or with time or with changing circumstances. Anyway.

[Using square brackets for things I couldn’t be bothered wording properly]

I have been getting properly fatigued lately. I’ve had to consciously be masking after I’ve been told I look tired for nearly every day two weeks straight (like hey. Fuck you by the way). Life is getting better lately, it really has been. I’m trying to fill my days with things I love and people I love and trying to be easier on myself. The past year and a half I’ve been working really hard to realise this! This has been manifesting through [doing hard things and new thing and things I love and being with people I love]

The past weeks I’ve just felt a little aimless. It’s not easy, and trying harder doesn’t seem to be the solution. (This is not giving up.)

Disability as a label defines your ability to not do things. It’s my choice whether or not I identify with that, but it matches. I guess.

The government does not see me as disabled because I haven’t seen the right doctors or my health complications aren’t yet nameable. Even though I am, by their definition, disabled! Fun! [I don’t need to prove this to anybody but the government], for pension reasons, so [that’s the only tangible weight the label holds for me.]

The main ones are type one diabetes and ADHD (I don't really keep that a secret). I guess fatigue too? Nervous system stuff? A little bit of long covid? Other things? People do not really look at these as disabilities, and fair enough, maybe not really. Given a lot of work there’s no hard barrier to anything you want to achieve. You just have to manage it. You just. You gotta. [it’s exhausting]. The management must be perfect, and the management is constant. You gotta admit it’s kinda funny one of those conditions requires near constant supervision managing a laundry list of possibilities and the other is an attention disorder.

There’s always the question of “what can you be doing better”

There’s a bit of a paradox in wanting to fill your life with things that make you happy and giving yourself enough space and rest to be able to enjoy them. Life is so full and beautiful and everything is struck in with highlighter. When shit gets rough and there are a bunch of things out of your control you have to step back and ask yourself: what can I actually do? And the answer, a good amount of the time, is nothing. ~~I’m often unwell and braindead and fatigued and trying as much as I can. [How can I remain stable when uncertainty is the one thing in life to rely on?]~~

It sucks having to figure out which of my problems are contextual or from disability or contextually flaring from disability. Doesn’t help with the feeling of needing to push myself, the fact that I have to decipher things as they happen before I can make a judgement on what my limits actually are and what is just a bad day. The brain fog sucks. It really does. Fatigue is nearly worse.

It's scary: having basic modes of autonomy I’ve taken for granted put in check. And with it, the finer things.

I really don’t like holding limiting beliefs. They’re a bad habit to build, but in the face of: “will I ever achieve stability” or “life is too much for me” it’s hard to not see them as pleas for safety. “You could be doing better” is the other side of that coin, the rebut to remission, but it’s a greedy(?) push to be making when things are already too much.
[nagging: the idea of resigning to forever dysfunction. I’m trying and it’s only getting me so far]

[this anxiety is also cheered on by the expectation that things will be getting worse, and I have to make the most of the time I have]

Motivation readily dissolves when fatigue comes into the picture, [and when all your wants are only found at a glimpse, the only want becomes to be able to want]

You can only put so many asterisks under yourself with “off day” until you’re just denying the reality. You’re only exhausted so many times until that’s all you are. Who wants that? I want to be something else, I feel the people around me deserve something else.

Forming and maintaining relationships comes with this little asterisk, too. How do I see myself? How am I seen? How am I, actually?

I want the best and to be better, and change is hard and slow. But it’s so much harder with the barriers to function, and I can’t say no to stepping up to the plate. I don’t want to say no!! I know it's important (and a part in healing), but too often resigning to bad days and sleep and illness feels antithetical to living well.

[Overall: the conflict of resignation and pushing to be better, the compromise still doesn’t seem to be enough. I wish it was that easy]

And then who am I? Who I want to be isn't quite within my reach (for now). I'm trying my best to look to the future, despite it all. I’m not trying to measure myself to any standard. I’m not trying to prove myself to anyone. I’d like to be enough just in the way I want to be. Those I love don’t expect me to be everything. The only thing I need to be ok for is myself. I have to take it slow or not at all. I have love. [I have nothing but time.]