#ptlds

[skys-archive]

I hate that there's no way to be disabled that people will accept.

If you show joy, or acceptance in your disability, you're not really disabled and no one will take you seriously when you do complain and well it can't be that bad and oh I'm sure you're used to it.

But if you're miserable then you're whiny and annoying and people hate that it's "all you talk about" and its always ugh you're always tired and can we please stop talking about this it's making me depressed and oh I'd kill myself if that happen to me.

If you're happy you have everything figured out and don't need help anyway but if you're miserable you're a whiny bitch that can't just suck it up. There's no winning

[rabidrekijo]

Arthritis at 25 is crazy tf you mean I need an ergonomic vibrator

[therpistlr]

🌱 "Rewiring the Wobble: Your Neuroplasticity-Powered Ataxia Workbook"

When Your Body Feels Like a Glitching System

You know the drill: legs that buckle like a marionette with cut strings, hands that tremor over a coffee cup, and the crushing shame of “Why can’t I just… move?!” Ataxia isn’t just “bad balance”—it’s your nervous system stuck in a loop of misfires, turning simple acts into Herculean tasks. Doctors toss terms like “degenerative” or “idiopathic,” but what you need isn’t jargon—it’s hope.

Why This Workbook?

The Ataxia Workbook isn’t another generic exercise log. It’s a battle plan co-created by neuroscientists, PTs, and people who live this wobble. Inside:

🔹 Neuroplasticity Hacks:

Exercises to rewire your brain’s movement pathways (spoiler: small reps > perfection).

Balance drills that meet you where you are—bed, chair, or shaky standing.

🔹 Coordination Reboot:

Hand-eye tasks disguised as games (because rehab shouldn’t feel like punishment).

Adaptive tools to turn “I can’t” into “I’ll try this way.”

🔹 Symptom Sleuthing:

Track triggers (stress, fatigue, gravity’s bad days) to spot patterns.

Journal prompts to vent rage, grief, or that tiny win (held a spoon today!).

🔹 Mindfulness for the Storm:

Grounding scripts for when the room spins faster than your thoughts.

For Anyone Who’s:

Tired of being told “just practice more” without a roadmap.

Done hiding canes or apologizing for spills.

Ready to fight for progress, even if it’s measured in seconds.

[disability-shout-outs]

Shout out to folks with Post-Treatment Lyme Disease Syndrome!

[buggbuzz]

so dealing with post-treatment lyme disease syndrome (PTLDS) has been annoying but at least i don't have cognitive symptoms and my rhumatologist has ruled out autoimmune disease. and he perscribed me a high-dose of naproxen and that shit WORKS. now i can have a cram day of writing notes for 12 hours straight and my wrist will barely hurt afterwards!!!! makes a huge difference for me academically

it feels so silly sometimes to get so aggravated over my symptoms. they're relatively mild unless strained, they rarely affect my ability to walk or use my hands, the pain isn't really that bad, and i don't have any cognitive symptoms bc the lyme infection never made it to my brain.

but it's just. i'm always aware of it. i can always feel the stiffness in all of my joints. i can feel the small joints within my hands and feet. and my joints just aren't what they should be—i can't apply much pressure with my hands, i can't use my hands for long periods of time, and i get random, annoying ass aches for no reason sometimes. and i'm fucking 20 years old! i shouldn't have goddamn arthritis in all of my limbs!!! my fucking elbows crack these days!!!

last september lyme stole my limbs from me. and even though the initial infection has long since passed, here i am, over a year later, still living with the leftovers every single day. so for me to finally get pain meds that can actually bring my hands back to almost completely normal? it feels like i'm finally taking my body back.

i haven't talked about my PTLDS on here in a while because i don't usually have much to say beyond "all of my limbs' joints feel wrong and its upsetting to me." but this shit is real, and i've been living with it for over a year.

and its so difficult to get medical help because so many doctors don't believe in PTLDS or won't take you seriously because you never found a bullseye and their useless broken western blots and ELISAs didn't come back high enough for a positive result (you would need to let it incubate in you w/o antibiotics for at least a few days in order to get a high enough concentration for a positive result. WHAT! i'm not DENYING MYSELF TREATMENT and WORSENING MY PROGNOSIS just for your stupid ass arbitrary minimum concentration are you INSANE???) thank god the CDC finally recognizes it as a real syndrome but the medical system needs to start taking this shit seriously.

[stem-and-leaves]

I'm taking new meds! They're neural anti-inflammatories and opioid blockers. So far:

Pros - feel like the people in those claratin commercials. My brain fog... Is gone. I'm not the slightest bit dizzy, confused, weak or tired, like I usually am. I can think, I can run, I can make dinner and then do the dishes after!

Cons - You have to take it in the evening. I'm not used to energy so I'm going manic and racing all around the city buying vintage tools and sewing patterns until 11pm. I'm so conditioned to fighting sleep every moment of the day that I've forgotten how to go to bed other than by passing out from exhaustion. I've been up till 4am or later for five days in a row. Send help

[drchinfat]

PTLDS

Can we all collectively agree, as a society, that PTLDS (Post-Treatment Lyme Disease Syndrome) is a term that should not be used?

It is a stigmatizing term that prevents patients with chronic Lyme disease from getting treatment. It makes them think that they will never get well from this disease. It kills people.

Also, it's frankly just plain wrong. People who have chronic Lyme disease were not treated adequately in the first place, if at all. I, personally, went without antibiotics or any form of treatment for about six years after getting bitten by a tick. SIX YEARS. So no, I do not have "PTLDS".

Imagine if they called neurosyphilis "Post-Treatment Syphilis Syndrome". That just sounds ridiculous, right?

Chronic Lyme disease is an active infection, whether it primarily affects your joints, heart, nervous system, or all of the above.

[skys-archive]

One day I will collapse to the ground, too weak and in pain to get back up. They will rush me to the hospital, where they will find every muscle and every bone is covered in a dark gunk that has somehow gone unnoticed until its reached this point. They will scrub me thoroughly, getting into every fiber of muscle and every crevice of joint and bone. They will pull out globs of the stuff and keep it far away from anyone nearby, incinerating it as soon as possible to keep it from infecting anyone else. I will spend days in recovery. They will all apologize. For never looking close enough to find the issue, for brushing it aside when I told them that I knew there was something inside of me, for letting this gunk grow inside of me for so many years. They will tell me I was right. And I will be at peace.