roan-phoenix

[roan-phoenix]

The side my friends don't really see.

Last weekend was my birthday, I saw my friends on Friday because one of them needed to see us because he needed a pick-me-up,

Saturday cooked a complicated meal with my partner that took multiple hours in the kitchen,

Sunday I played Warhammer, which was 6 hours of me being on and off of my feet. Mostly being on my feet, it's hard to stay seated when you need to measure distances between units.

And then Monday was work then D&D.

This absolutely was me overdoing it. Persistent migraine, dizziness sitting upright, mad tachycardia. I've been off work since Tuesday because I can't even sit at my desk.

I love that I felt well enough to see my friends again, I'm mad that I've had to pay for it physically.

[roan-phoenix]

Reblog if you understand that disability is not a monolith and two people with the same disability do not have identical experiences ✨

[roan-phoenix]

To fellow physically disabled people I highly recommend saying PARKCORE whenever you try to stand up. Makes the struggle very epic poggers.

[roan-phoenix]

Huginn got the big thumbs up from his vet at the weekend!

We're successfully keeping his lungs clear of fluid and he's perked up so much. He's also been such a good boy taking his medication everyday, even reminding me it's time for his blood thinners.

No matter how much longer we have him for, as a HCM diagnosis usually means a short term prognosis, I'm going to be cherishing every second of this cheeky, grumpy old man.

At least one of us is doing well...

[roan-phoenix]

I have a CHRONIC FUCKING ILLNESS

No, my symptoms are not an effect of fucking trauma.

Cool that you healed your trauma responses, but don't lecture me saying that the fact I get dizzy standing up is from trauma.

[roan-phoenix]

chronic fatigue is just a never ending cycle of “maybe I just need to push myself harder” -> flare up -> recovery -> “oh now that I can do stuff again I need to make up for all the time I spent resting” -> flare up

[roan-phoenix]

I miss being able to do photography

[roan-phoenix]

Me : goes to bed at a reasonable time for once because I've not been getting enough sleep and it's making my POTs worse..

My body : you get a one hour snooze. No more.

[roan-phoenix]

Migraines are so odd, like wdym I have a headache and now I'm temporarily blinded

[roan-phoenix]

PoTS culture is..

I just wanted Weetabix :(

I wasn't doing more than a walk or anything :(((

[roan-phoenix]

Starting my day in a flare up.

Palpitations, headache, dizziness. Can't afford to take more time off though, already had most of last week off work.

[roan-phoenix]

He needs snacks

[roan-phoenix]

Same company, MORE SODIUM 💜

They have 500mg of sodium per serving (2 tablets) the chews only have about 100mg per serving

shout out to these things for making me Not Die

i have pots so basically i need a stupid amount of salt and this entire bag doesnt even cover the reccomended DAILY sodium intake for me but yk. its something 🫠🫠

[roan-phoenix]

hey google how to tell someone that no, actually, there isn’t a magical cure for my illness, i will just Be Like That for the rest of my life

[roan-phoenix]

hello for the love of god hi. if you have a chronically ill/disabled loved one who is constantly flaking on plans, unable to attend events due to illness, please please please keep inviting them to things anyway. being excluded from events due to illness or the assumption that we won't be able to attend is the worst feeling, even if the assumption is true. a cursory 'hey we are planning to do xyz, i know this thing isn't always easy for you but we'd love to see you there if at all possible' truly means the world. better yet, make plans with your chronically/ill disabled friend in mind and help them navigate the accessibility of it all or choose what you do together. failing that, if you haven't explicitly been told to stop inviting them to things, continue to include them in your plans because being deliberately excluded hurts like hell

[roan-phoenix]

There’s no such thing as work-life balance for neurodivergent & chronically ill people.

This is because everything in my life requires work:

maintaining friendships

keeping up with my hygiene

managing bills

making money

remembering my basic needs

sleeping regularly

outputting creatively

All requires some aspect of work for me.

And when everything in your life requires work, your balance goes out the window.

If you're neurodivergent and overwhelmed — I see you.

If you're chronically ill and overwhelmed — I see you.

You're not dysfunctional.

You're not incapable.

You're doing your best.

[roan-phoenix]