reaghan

It's real talk time.

Having Ehlers danlos syndrome hypermobility is not pleasant.

It's an invisible illness. It's chronic. I'm stuck with it. there's no cure.

My body does not produce enough collagen (the stuff that holds us together) so my joints are loose and pop out a lot, and I'm in nearly constant pain.

Some days I'm fine, I function perfectly and I'm normal. Then there's times like recently.

My body is betraying me. Constant pain, even worse than usual, is mainly down to the sudden change in weather/ temperature plus overdoing it at work (52.5 hours last week, mostly alone, I work retail). My hands are getting worse all the time and I'm terrified I'm going to lose the ability to do my art, which will kill me!

I need crutches to walk on bad days.

I move too fast or stand up too fast and I lose vision & feel dizzy & my heart rate rockets.

Then there's what I call the brain mushies. Where my brain stops functioning normally.

I have a panic disorder and anxiety, I'm on meds for it. But the brain mushies are another story. I struggle to read things, I forget what things are called (I called a fire engine a 'fire ambulance'. And beach huts 'sea houses') and I forget things, a lot.

I may look like a generic healthy human being but I'm suffering daily, and there's nothing I can do.

I'm constantly exhausted, yet struggle to sleep (it's currently almost midnight & I'm awake, even after taking my strong pain meds that knock me out)

I have to work full time which nearly Goddamn kills me some weeks because I can't get any help, apparently I'm 'not disabled enough'

What I have is classed as 'rare' although a lot of people have it. But doctors know very little about my condition which hinders our treatment. While there's no cure, it can be managed to make it less shitty.

When you're parents tell you not to judge a book by its cover, you should listen, because the amount of times I've been accused of faking my illness is ludicrous. I try so hard to live a normal life. It's the wellness I'm faking. Not the illness.

This has been Real Talk With Reaghan. Maybe I'll make this a regular thing!!!

Caio for now!!

💜