#actually eds

[elementop123]

Autistic and mentally ill friends with service dogs, I just recently got my service dog prospect (who my trainer has recently graduated to service dog in training in her language choices now that she has 2 tasks in training along with her obedience and neutrality). I'm doing better and better at coping with having her, and I'm recognizing triggers and building in additional supports, but I'd be lying if I said I wasn't really, really overwhelmed. I've been having more meltdowns with her than without her, almost always when trying to take her out in my wheelchair, but I'm having fewer and fewer as the weeks go on. I'm struggling to be able to do things like have my aide shower me and take my morning meds and also take care of the dog because, thanks to my chronic illnesses and emotional/sensory capacity, I'm requiring a lot of sleep I between each thing I do with her to recover for the next thing. I'm overall so happy to have her. We're bonding, and she's learning quickly. I just am putting the struggles out there in case anyone has advice/anecdotes/tips/hacks.

[littleirontablet]

Anyone else with gastro issues eat solid food and then regret it like immediately

Like oh great now I have to deal with [insert symptom here] for the next 6-12 hours

And unless I force myself to thr0w up I can’t do anything about it

Fuck this fuck my life and fuck the drs who won’t help

[fishbaby]

simultaneously the most vindicating and infuriating thing a doctor has ever said to me is responding to me saying I think I might have EDS with "Huh. That would explain a lot."

??? so why didn't you mention that to me ever, over the 10+ years I've been your patient!? why did I have to figure this out for myself. this is literally your job. it would've been good if you could've mentioned this even once over the hundreds of times I described textbook symptoms. preferably before the irreparable degeneration I now have in my spine from 27 years untreated.

[elementop123]

I used to work part time. I also tried a full-time job once. My health and disabilities made it impossible to have consistent attendance, and I had medical and psychiatric episodes at work, plus my level 2 Autism and all that comes with it posed huge barriers, as did the progression of my genetic condition and losing my ability to walk while teaching preschool.

All that said, I got to a point where I had niche knowledge in my field (special interest plus education and training plus a decade of experience), and I was GOOD at what I did.

I did various iterations of tutoring people with and without disabilities in English and English as a Second/Foreign Language (certified) before finally finding my niche preparing prospective immigrants for the English language tests required to immigrate for study or business in the US, UK, or Australia.

People sought me out as a teacher on the basis of other students' recommendations. But tutoring, even just 1 student, and customizing the lessons to the students strengths and weaknesses in an ongoing way as we went, was taking a huge toll on my health, and my therapist eventually suggested that I stop.

It took a while after my therapist and autism coach pointed out that working was making me sick for me to stop. I was already on SSI and ssdi at the time. I was classes as totally and permanently disabled by them, so I just had to report that I no longer had any freelancing income.

I miss the feelings of purpose, being good at something, and connection that came from working. And the extra income. But I'm doing much better with my physical and mental health without working.

[spaghettimakesflags]

age regression and eds combo flag

requested by: @bunnelbaby

[elementop123]

I got stuck in my bed this morning. I can't go from laying to sitting without external help, like the electronic sitting up function of my hospital bed or, on a good day, leveraging myself sideways and out with the bars. Today was not a good day. I had slid down the bed and couldn't reach the button to sit up, but I was too far down the bed for it to work if I had been able to reach it, and I was too weak to sit up with the bars after a night of my chronic vomiting flaring. It was 30 minutes after my aide's shift starts, so I called out for her, hoping she could get me up with my gait belt and into my wheelchair, but she didn't come. After a while, I checked my phone to discover that she had called off, and the coverage couldn't get there for 90 minutes.

[spaghettimakesflags]

Crutches user pride flag

@thegayquail

[littleirontablet]

I fucking hate that the nhs will only help me is I look sick enough

I’ve been poked and prodded and touched and had so many different medications, procedures and tests

But since I don’t look “sick” enough the drs won’t do the tests they think I really need

Like okay you think I should have some nutritional support and gastric emptying study great!

Oh wait I don’t look like I need that?

Womp womp to me ig

Ffs I hate it here