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sometimes my internalized ableism beats my ass but then I remember that I literally got a permanent spinal injury and a shoulder subluxation from sleeping wrong

#heds #hypermobile eds #hypermobility spectrum disorder #hypermobility #hypermobile ehlers danlos #chronic joint pain #joint pain #joint instability #spine injury #internalized ableism #ableism #subluxation #dislocation #actually disabled #spoonie #chronically ill #disability #chronic illness

Every once in a while, someone in my presence mentions they are experiencing something very upsetting in their physical condition, and it takes me a minute to process that they’re actually as distressed as they sound about it.

Because that’s just one of the dozen or so physical ailments I deal with on the daily.

And I carry on, calmly and quietly. Because I must.

But this is not something constant for them. So they’re distressed.

But it’s taken me too long to connect these dots and show the proper about of concern, because these are not things I complain about, because “concerning things” for other people are normal for me. So I look like a jerk. Because to me, these things are only distressing when they get worse than usual. Not the fact that they happen every day.

Sometimes it makes me feel very mean because I would like to complain and moan about how I feel on a given day, and I would sometimes like a little compassion. But I feel like this all the time. So complaining about it would never stop, once I began.

Sometimes I want to be very mean and say, “You are uncomfortable because you have this one symptom today? I have this symptom and ten other different ones every single day of my life, and you do not hear me whine about it! Do you want to play the Misery Olympics? Because I assure you that you’ll have a much harder time filling slots than I will. I have sympathy for your suffering, but you whine about it far too much for my tastes. I cannot bear any more of you and your grains of suffering against my many buckets.”

But then that is very mean and I would not want to have anyone say such hurtful things to me when I am unwell and want to whine.

So I will limit my grousing to a little blog, and not pour it out upon people who don’t deserve my meanness.

#chronic illness #chronically ill #chronic pain #chronic migraine #chronic exhaustion #chronic fatigue syndrome #chronic fatigue #me/cfs #joint instability #pots #pots syndrome #hypermobile ehlers danlos #connective tissue disorder #I’m so tired

okay, so, apparently your kneecaps shouldn’t be able to be moved around a lot or side to side, and if it can do that, it can be indicative of instability in those joints.

i can and always have moved my kneecaps around whenever i’m bored or just randomly, especially side to side.

this is a very fun (not, but useful at least) discovery.

#chronically ill #heds #chronic illness #chronic pain #hypermobile eds #hypermobile ehlers danlos #probably heds #hypermobile joints #hypermobile spectrum disorder #joint instability #hypermobile #hypermobile ehlers danlos syndrome

“Your MRI looks normal”

For many women with EDS and hypermobility, this sentence is both confusing and invalidating.

Because the pain is real. The instability is real. The functional limitations are real.

So why does imaging often look normal?

Most imaging — X-rays, MRIs, CT scans — is designed to detect:

• Arthritis • Fractures • Large tears • Structural damage

But hypermobility pain usually isn’t caused by these issues.

The real driver is often ligament laxity.

Loose ligaments allow joints to move excessively. This creates micro-instability, muscle guarding, nerve irritation, and fatigue.

These subtle functional problems rarely show up on static imaging

Many providers rely heavily on imaging and spend less time on detailed physical exams. When imaging is normal, symptoms may be dismissed.

But instability is a clinical diagnosis — one made through history, movement assessment, and hands-on examination.

A normal MRI doesn’t mean nothing is wrong. It often means the problem is dynamic, not structural.

If you’ve ever felt unseen because your scans looked “fine,” this post is for you.

#ehlers danlos syndrome #hypermobile ehlers danlos #hypermobile joints #hypermobile spectrum disorder #hypermobility #chronic pain #subluxation #joint instability

the hokey pokey but putting it in and out is just your joints dislocating

#do you see the vision #pls laugh #ramblings #hEDS #hypermobile ehlers danlos #hypermobility #ehlers danlos syndrome #joint instability #disabled #disability

At this rate I’m gonna make my own jelliebend shorts cause ain’t no way I’m spending $90 on that shit to squish my pelvis back together

#jelliebend #hypermobility #suspected heds #joint instability #my SI joint moves and it’s not supposed to #chronic pain #why is it so expensive

Hyper - 'god forbid you do literally anything you enjoy a little bit too much but I won't tell you until it's too late' - mobility. 😖😐

Yeah, now it's painful to stand up, I'm walking like I've pooped myself, and I'm really hating that my bedroom is in the attic up two steep flights of stairs