This post discusses disability, fatigue, chronic pain and emotional distress

Sometimes I hate being disabled.

I don’t particularly like admitting that.

There is something deeply uncomfortable about saying that out loud, especially when you have spent a lifetime learning to accept yourself, advocate for yourself and make peace with the fact that there are some things you can’t do.

Admitting it feels like a failure.

But today has been a why did I have to be disabled kind of day, and I hate days like today.

My cerebral palsy has decided to flare over the last few days, and I have barely done anything except sleep and, somehow, I am still exhausted.

Not exhausted in the sense that I should probably get an early night, but the kind of exhausted where your body feels like it has been switched off and then dragged through concrete.

My muscles ache.

My body feels heavy.

My head feels like my brain has been replaced with something considerably denser.

Everything takes more effort than it should.

Even things that normally feel automatic suddenly require energy, thought and concentration, and sleep doesn’t magically fix it.

I can sleep for hours and wake up feeling like I haven’t slept at all.

So I sleep more.

And then I feel guilty for sleeping.

And then I feel angry because I’m so exhausted.

And then I feel angry that I am angry.

It is an exhausting cycle.

This is the part of cerebral palsy that people don’t talk about enough.

They see the physical disability; they see the movement difficulties, the things I struggle with physically. They see the physical disability; they see the movement difficulties, the things I struggle with physically.

They see that I can’t walk.

They might notice that one of my hands doesn’t function very well sometimes.

They see that my body doesn’t always cooperate the way I want it to.

They see the spasms.  

But they don’t necessarily see what happens afterwards. they don’t see the exhaustion, they don’t see what it costs me to do things, they don’t see the embarrassment I feel or the guilt.

They don’t see the days where my body simply says, “nope. We are not doing this today.”

And they definitely don’t see the emotional toll of that because I don’t let them.

Because sometimes I am just so fucking angry at my body.

I hate having limitations, and I hate having to acknowledge them.

I hate needing more rest than other people.

I hate having to think about what I can realistically manage before I do things.

I hate knowing that something I desperately want to do might simply be too much. 

I hate feeling like my disability is taking over my life because sometimes I want to forget that I’m disabled. I want to wake up and not think about how my body might let me down today or do something without calculating how much energy it will take.

And sometimes I resent the fact that I don’t get to choose. I think that is the bit that hurts the most because I didn’t choose this. I didn’t choose to have cerebral palsy; I didn’t choose the limitations or the exhaustion or the spasms or the chronic pain.

And sometimes that makes me fucking furious.

There are days when my disability doesn’t just affect my body, it consumes my entire being.

It affects my ability to think, to concentrate, to communicate.

It affects my patience, my mood, my independence, my sense of self.

And, yes, I know tomorrow might be better. I am over the worst of this flare-up now but knowing that doesn’t make today any less shit.

Sometimes I don’t need someone to tell me that it will get better, or be reminded how strong I am, or how well I manage. Sometimes I don’t need a lesson about resilience.

Sometimes I just want to say I am so fucking tired of this.

I am angry.

I am exhausted.

I hate that my body has limitations, and I hate that I have to accommodate them.

I hate that sometimes my disability gets to decide what my day looks like, and I hate that admitting any of this can feel like I’m somehow failing at accepting myself.

But maybe I am allowed to be angry.

Maybe acceptance doesn’t mean I have to be grateful for every part of my disability.

Maybe I don’t have to turn every difficult experience into an inspirational story.

Maybe sometimes disability just fucking sucks.

Maybe I can like the person my disability helped me become, while also grieving the things I wish my body could do.

Maybe I can be proud of myself and still have a why me day.

Maybe I can be strong and still admit that sometimes this is too much.

Today was one of those days.

Hopefully tomorrow will be different, but today?

Today I am allowed to be angry.

I am allowed to be tired.

I am allowed to hate this.

And I am allowed to admit that sometimes, being disabled really fucking sucks.