My daughter is an HEDS warrior. So wonderful to finally have this seen on such a big platform. #edslife #ehlersdanlossyndrome

https://www.cnn.com/2022/12/24/health/hypermobile-ehlers-danlos-syndrome-health-hnk-spc-dst-intl/index.html

I want to reconnect with my #EhlersDanlosSyndrome community. So, let's start with a chat.

What's the most original way you have managed to injure yourself?

#EhlersDanlos #EDS #hyperlaxité #Hypermobility #Hypermobilität #hiperlaxitud #EDSChat #ChronicPain #ChronicIllness #POTs #MCAS #ChronicFatigue #HMS #EDSLife #EDS #Disability #NEISVoid #DisabledResilience #EhlersDanlosLife #エーラースダンロス症候群 #VEDS #תסמונותאהלרסדנלוס #flexibilidad #Bendy #Wobbly #flexibility #ConnectiveTissueDisorder #MarfansSyndrome

Also welcome to comment are Marfans Syndrome, Hypermobility Syndrome, or any other connective tissue disorder people.

Ah, ,#EhlersDanlos Always new and exciting forms of pain! 😬​ #edslife #EDS

"How's your depression and anxiety?"
- "I don't have those."
"You don't?"
-"No..?"

"Okay, how's the diabetes?"
- "I don't have diabetes either."
"We should check your blood sugar levels".
- "No, I'm here for my sleep apnea."

"Oh right... How's dieting & losing weight going then?"
- "It's not".
"Why not?"
- "because I can barely eat or exercise as it is. Keeping my body nourished is the challenge here."

Actual conversation just now.
#EDSlife #Ableism #SleepApnea

"How's your depression and anxiety?"
- "I don't have those."
"You don't?"
-"No..?"

"Okay, how's the diabetes?"
- "I don't have diabetes either."
"We should check your blood sugar levels".
- "No, I'm here for my sleep apnea."

"Oh right... How's dieting & losing weight going then?"
- "It's not".
"Why not?"
- "because I can barely eat or exercise as it is. Keeping my body nourished is the challenge here."

Actual conversation just now.
#EDSlife #Ableism #SleepApnea

// two little dogs on the bed //

The fluffy kids don't seem to mind the days in bed (#EDSlife) especially now that it is cold, and the bedroom is warmer with our 400 watt infra red panel, we prefer it here. Guess we're sort of hibernating until spring 😊

Here's a picture of them snoozing with me:

People who've got their life together: "we're setting up the Christmas tree! 🎄⭐️"

Me, obviously autistic and disabled in a messy house because I can't cope and nobody helps with anything: "I'M NOT ADDING MORE CLUTTER!"

#ActuallyAutistic #Disability #EDSlife

Owwww my neck 😩😩😩😩

Did a new pokemon game come out yesterday?
Yes it did.

Did I ruin my neck because of it?
Yes... very much.

#EDSlife

// Picture of rainbow wheels //

Going to work tomorrow with the new #wheelchair, looking forward to it, curious if all will go as expected.

Should I add the rainbow colors to the wheels like I did with the old #Ottobock?

#WheelchairLife #EDSlife #QuickieArgon #Rainbow #RainbowWheels

// new wheelchair//

I've got my new wheels!

The improvements include higher push bars so my partner can push when needed, a fully formed back rest with SI-support, ergonomic, flat push rims with grip on top, and just the right size, my previous chair was way too big! 🌻

#WheelchairLife #Wheelchair #EDSlife #QuickieArgon #Disability #EhlersDanlos

// fake plants, decoration //

I've decorated my house a bit with some things I got and it shows how very little can make a difference.

My mirror has always felt lacking something. The coffee table was just... empty.
Now there's greens, even though fake.
I can have plants, even when I can't care for them.

All people deserve nice things.
Yes, all of them.

#EDSlife #FakePlants #Disability

Let's call this one "huge progress"!
I actually had some deep sleep and I feel like a new person.

How? 1. Earplugs, 2. Heavy sleeping mask, 3. Heavy blanket. 4. Going to sleep when I felt tired and didn't need my partner to do the same. 5. Made sure I was ready to close my book and fall asleep at 11pm, so brushed teeth, sleep clothes on, meds taken, etc. 6. PAIN MEDS, so pain-somnia isn't as much a problem.

Repeat?
Let's see how tomorrow goes 👍🏼
#Insomnia #Painsomnia #DeepSleep #EDSlife

// picture of a tiny dog //

Sleeping terribly since daylight saving time. (That useless and confusing moment the clock stops making sense for 4 weeks straight)

I've put my 8kg heavy blanket on my bed to see if that helps me sleep, so I don't have to lie there and look at the inside of my eyelids until at least 3am 🤷🏻‍♀️

Tips to sleep deeper are welcome!!
I have almost no deep sleep 😩☠️

#Insomnia #HeavyBlanket #Dog #Chihuahua #Sleep #EDSlife #DaylightSavingTime #CantSleep #DeepSleep

I'm getting a new wheelchair next week 😯
Can't wait to see if they got it right this time!

Currently I'm using my old Ottobock Ventus which I went to school with.

The wheelchair I got after, is currently unusable because my illness progressed 🙃 but do tell me again how EDS isn't a progressive illness. Lol (Don't)

#WheelchairLife #EDSlife #Disability #hEDS

@besenwagen this Dutch autistic person got a drivers licence at age 28, long after being born autistic 😂😂

Also wanted to go to conservatory and had both classical singing, the flute and the level ready... and then I became disabled 😵 oops! #EDSlife

So now I work for the local news and play #Otamatone 🤣

I did some light exercise with my PT yesterday to see if that affects my post-covid muscle issues (acidification, heaviness, etc)

And yes, I can officially say the exercise made it worse. I was also exhausted AF when I got home and went straight to bed.

No more exercise until it goes away on its own.
Hoping hard that it does, it's been weeks 😐

#EDSlife #covid #LongCovid?