chronically-lulu

[chronically-lulu]

if you're considering finally using that mobility aid, this is your sign to do it. seriously.

[chronically-lulu]

government mandated day to listen to music and drink coffee while gazing out the window

[chronically-lulu]

[chronically-lulu]

Things I didn’t realize weren’t supposed to hurt your joints:

Scooping ice cream (wrists and fingers)

Walking, jogging, running (ankles, knees, hips)

Holding those shopping baskets (shoulders)

Playing piano (fingers/knuckles)

Walking up stairs (knees)

Using scissors (fingers, hands, wrists)

Vacuuming (wrists, shoulders)

Getting up after sitting for a while (hips)

[chronically-lulu]

[chronically-lulu]

I don't know who else struggles with this but someone out there probably does, so here's an affirmation to help combat internalized ableism:

My braces and mobility aids don't ruin my outfit.

My safety and comfort are more important than an outfit.

[chronically-lulu]

The chronically ill urge to go back to bed after doing any necessary task.

[chronically-lulu]

Today has been a lot.

The world is being set on fire and it’s terrifying. We’re having the first heatwave of the summer and my body isn’t having it. Really thought a migraine was coming on, but now I think it’s sinus shit. My ears keep popping, and it felt really good to wash my face and have a warm washcloth on it. Took ibuprofen, chugged an electrolyte mix, and am now in bed. Fingers crossed I feel better in the morning and don’t meltdown in the heat tomorrow…

Also, I’m on my period and it’s really abnormal. I knew they’d be weird after having covid, but it’s super light and soooo slow. Very different than my previous cycles of a two day start, heavy for three days and then a gradual stop. This is like a four day drip so far… idk. TMI.

Time for night braces, O2 & sleep~

[chronically-lulu]

sometimes the executive function fairy godmother finally shows up, whacks you, and then you’ve got to run around like cinderella on a midnight deadline trying to get things done before time runs out and your brain makes it illegal again

[chronically-lulu]

Calling my EDS a genetic disorder: medical, dull, depressing

Calling my EDS a family curse: whimsical, fun, suggests supernatural foul play

[chronically-lulu]

[chronically-lulu]

[chronically-lulu]

oh haven’t you heard???? things will get better and you will be okay

[chronically-lulu]

Saturday morning chill~ got up around 9:45, made coffee, took my meds, and am being supremely lazy in bed. Still sort of flaring, but meds, heat pad, and braces are helping. I made it to my chiro appointment yesterday but had to move the ortho. I just didn’t have the energy…

W is coming over later for a movie date night, and I warned him that I’d probably be low energy, but he reassured me it would be fine. He seems to understand how the chronic illness life goes… and the times we’ve been together before and I’ve been all braced up, he’s completely accepted it. If anything, he’s been more attentive & caring during those times. And he’s always making sure I’m doing okay when we’ve gone out.

It’s been really amazing to finally date someone who doesn’t mind when plans change or if I need special accommodations or help. And who doesn’t freak out about any of my braces… one guy, (we were a month into dating and I’d told him about most of my medical stuff, but he hadn’t really witnessed it…) I got to the restaurant and had a soft collar on cause my neck was just nagging me… he lost it. Didn’t understand why I needed it and demanded I take it off or we had to leave. I left and never spoke to him again. It was so fucking demoralizing. And it took me months to even think about dating after that.

But W has been completely different and I feel like things are going really well with him. I’m looking forward to having him over tonight and I know that even if I don’t feel so great, he’ll take care of me. // He always tells me I look cute in my braces, and I can’t even say how wonderful that makes me feel. ((And is it just me or is it hilarious and hot to make out with someone while wearing a neck brace?? Hahaha)) // Definitely looking forward to tonight!

[chronically-lulu]

Ugh been MIA on here cause I’ve been down with a bad flare up. Overdid it last Saturday and spent the entirety of Sunday in bed. Monday was a little better, but it was finally yesterday that I managed to have a decent day. I’ve definitely broken in my CTO and thank goodness I got it fit when I did. It really helped during this flare.

Tomorrow I’ve got a chiro appt and then back to the ortho for my final hip brace fitting. I’ll probably take my smart crutches to use while I’m getting used to it.

Fuck I’m like falling asleep with my phone in my hand trying to write this… more later. Time now for oxygen, wrist braces, and an eye mask. Sooo stylish~

[chronically-lulu]

feeling like her lately

[chronically-lulu]