#remus vents...kinda

I keep getting TikTok after TikTok about hEDS (Hyper-mobile Ehlers-Danlos Syndrome) and they're all awareness and I'm just...

I'm tired. All of them are relatable, all of them make me sigh and want to cry because it's right.

I was diagnosed with hEDS, I have hEDS.

My joints are falling apart, my legs don't hold my own body up some days. I've called out sick for a week straight before because I was in so much pain.

I regularly collapse, my knees slip, my shoulder jerks out and in of socket, my wrist creaks and cracks, my fingers lock up, my back hurts.

I limit my hours at work to 6 max per shift, I remember exhaustedly telling my employer that I have hEDS and no it's not just being extra bendy, my joints slip and dislocate.

"Can you still grab carts tho?"

That was their concern and I just sighed and told them if I'm not having a flare then sure, I can grab a few.

I'm tired...I joke about how my sister can go to the doctor and get told to watch her cholesterol but other than that she's doing great !! I went and I walked out with a list of 6 various offices to call,,,all but two were physical. Pain Management, Physical Therapy, Rheumatology, and Nerve Conduction Studies.

Fun fact the first Rheumatologist my PCP wanted to send me to rejected me because I have Ehlers-Danlos. That was literally the reason...the new one specializes in patients with EDS so ....yay?

I've come to terms with a lot of things to be honest.

I know that I don't have much longer being able to walk without assistance 24/7, I know that within 10 years max I will use a wheelchair, I know I will start to need my braces on more joints more often. I've been looking at forearm crutches. I know this. I know I'm getting worse.

I can feel my body getting worse.

I'm angry about it. I hate it. It enrages me.

But I've come to terms with it at the same time. It's a weird feeling. Angry but being okay with it. Being content and angry at the same time is strange.

I'm gonna head to sleep now, I told my partner I was going to bed a few hours ago and it's 3 am now, so: I'm sorry Baby, I'm going to bed I promise but Ironically my back was hurting so I couldn't sleep.