Autism and Rheumatoid Arthritis

Heya, I’m Lio, aka red-prince-lio. I made this side blog to use as a space to document/talk about/reblog things about my health problems. If you have any questions regarding a health issue I have, please feel free to ask away, and I’ll do my best to answer!

[howtobeapersonwithfibro]

friendly reminder that if you have a hard time eating due to nausea or other chronic illness ickies, just eat what you can eat. even if it’s not particularly “healthy,” getting calories in your body to help it function is more important.

[maveriquemagpie]

this applies to fat people, folks with eating disorders, and autistic people who can’t eat certain foods!!!!!!!! we need to eat. it’s okay to eat “unhealthy” foods, sugary foods, processed foods. especially if it’s the only thing you can eat.

[cuntess-carmilla]

An aspect of Ehlers-Danlos Syndrome that is very often not discussed, let alone addressed by medical treatment, unlike the associated orthostatic intolerance, chronic pain and recurrent (partial or total) dislocations, is the associated autoimmunity aspect of it.

It confuses me because orthostatic intolerance is much more talked about, and rightfully so! 90% of EDS patients have POTS... But 89% of EDS patients have MCAS and there's (lesser, but still existing) comorbidity between EDS and other autoimmune illnesses, such as ME/CFS and Fibromyalgia.

It took me my autoimmunity going from disabling but mild-ish to suddenly unleashing with a fury a couple of months ago for me to look more into it and holy shit do I wish I'd taken it more seriously earlier. Until very recently my regime was only addressing my orthostatic intolerance, dislocations and poor nutrient absorption but now looking back my autoimmunity has been having a massive impact in my life since at least 2013.

Some symptoms that should make you look into autoimmunity (especially into MCAS) if you have EDS or tbh even if you don't:

Migraines or recurrent intense headaches.

Food allergies.

Allergies in general.

Shifting/dynamic allergies is a glaring symptom of MCAS specifically.

Gastrointestinal disturbances (diarrhea, constipation, IBS, bloating).

Fever-like symptoms that take a while to go away and/or get better with antihistamines.

Poor body temperature regulation (from feeling too hot to feeling too cold or getting chills).

Neurological or cognitive dysfunction/brain fog.

Unexplained fatigue, especially if it's exacerbated after eating certain foods or being outdoors.

Intense fatigue post exertion (can happen immediately after or within the following couple of days).

Asthma.

Decreased libido.

Hair loss.

Difficulty breathing deep or perpetually clogged nostrils.

Chronic pain experienced as uncomfortable/painful stiffness in the joints rather than (just) pain from dislocations (yes they can happen simultaneously it's hell).

Take care, babes.

[nnilkyway]

man ableds are so weird. “i dont want you using a wheelchair cause i dont want you limiting yourself” the wheelchair is the way that i dont limit myself, and can experience the things in life i want to with less pain. the only one limiting me here is you

[geeses]

Hey !! I was just wondering what corset you recommended for managing EDS? Also where to get wrist supports?? Thanks!! 💕

Happy to help! I got my corset from timeless trends! Reasonably affordable and literally a lifesaver for EDS and POTS. I am wearing the cotton novice one. I recommend the natural fabrics if you have MCAS, too. The wrist support is the "wrist widget", from Jeff Bezo's hellstore. I get most my braces from there, the other wrist braces I use are from the brand Zofore.

[thoughtportal]

painting made easier

[werewo1fcatboy]

[Audio Transcript:

Do you want to paint but pain, disability, limited range of motion or tremors are getting in the way of that?

It’s world watercolor month and disability pride month, so let’s combine the two and talk about ways that you can watercolor and make it a little easier on yourself.

First up, if you struggle with grip issues, some manufacturers like Blick will actually make some of their brushes with egg shaped handles.

These are typically easier to hold, but they do come in a limited range of options so you can get something like one of these egg shaped pencil holders that will do more or less the same thing. These are just a bit easier to hold and they can reduce hand fatigue.

Next up, if you struggle with something like tremors or shaking, weight is your friend. There are universal weighted handles that you can slip onto the end and tighten on your brush or whatever you’re using as long as it fits in, and it adds a bunch of weight to the back end of it so it reduces the amount of shaking that’s possible.

If you struggle with grip strength or need something to help you hold onto something, this is an easy ring writer clip, and you can slot your brush into it and even if you’re not gripping it tightly it’s still secured to your hand.

Another option is something like this, this is an easy grip. It’s a silicone attachment that you can place on that give you an extra handle and extra security for holding your brushes and other art tools.

And finally one of my favorite tools is this artist leaning bridge. Mine is an acrylic piece of plastic that just sits over the top and allows you to rest on top while you can paint underneath it.

End Transcript]

[yourhealingjournal]

you can always start again. clean up your socials, make new playlists, donate clothes you no longer wear. try out a new recipe, move to a new city and make new friends, pick up new hobbies you never thought of before. there is no limit to how many times you can press the reset button. it's okay to change and start over. you don't need anyone's permission to do it.

[starrythomas]

Maintenance cleaning for executive dysfunction

or anyone else who doesn’t know what on earth they’re doing.

(I have spent YEARS trying to get my brain around how to clean my house consistently, which has been frustrating because I’m a very tidy person who likes my house kept nicely. I have now managed to do it once a week for three weeks in a row. I don’t think I’ve done that before in my entire LIFE. This is the process I finally figured out which works for me, but it’s okay if it doesn’t for you! Everyone is different.)

The set-up

You will need:

1 microfibre cloth

1 flat-sponge mop handle and 2 sponge mops (or 2 full mops if you prefer) (the mop is vital for this system working for me)

3 standard cloths

Washing up liquid

All-purpose cleaner (I like Bio-D because you get a nice shine on mirrors and glass without needing a separate glass cleaner)

Bathroom cleaner spray (I like Sainsbury’s Antibacterial Bathroom Cleaner Spray - it’s cheap and really effective)

Toilet bleach

Optional but recommended: gloves for cleaning in

Colour-code your cloths, either by sewing different colours in each, attaching different ribbons, or even sewing on a patch. I will use green, orange and red for this post. It also might be a good idea to colour-code your mop-sponges, with green and orange.

The green cloth is kept in the kitchen, and can go anywhere except the bathroom.

Orange and red cloths are kept in the bathroom, and do not go anywhere else.

The process

This is the in-depth, step-by-step version. There will be a tldr version at the end.

It’s less complicated than it might look, and takes me about 15 minutes.

1: Mirrors and surfaces.

Get your microfibre cloth. One surface at a time, spray all-purpose cleaner on your mirrors, glass and other assorted surfaces and wipe them clean. You can do as many or as few as you have the energy for.

Get your green cloth. Use all-purpose cleaner to clean your kitchen surfaces, hob and kitchen sink.

2: Mop.

Get your kitchen (green) mop-sponge and get it damp. Add a small squirt of washing-up liquid to the sponge or the floor. Start from the corner and mop yourself towards the door.

If you have other mop-able floors, do those next.

Then mop your bathroom floor.

Wring your mop out in the bathroom sink then swap mops or mop-sponges. Spray bathroom cleaner on your tiles and tub. Use the mop-sponge to scrub them (absolute game-changer compared to leaning over with a cloth, I’m telling you), then wring it out in the bathroom sink.

3: Bathroom.

Grab your orange cloth and use the bathroom cleaner spray on your bath taps, shower head and bathroom sink + taps.

Rinse with the shower (or if you have a fixed shower-head like me, chuck some water at it with a cup).

Grab your red cloth and use bathroom cleaner spray; starting with the handle/flush, work your way through from the cleaner to the dirtiest parts of the toilet.

Squeeze some bleach around the toilet bowl.

Put all your cloths in the washing machine, wash your hands, and you’re done!

tldr graphic I made in two minutes on LibreOffice Impact:

Feel free to print or use this info however you like if it’s helpful to you!

[wholeheartedsuggestions]

little steps toward better taking care of yourself are not insignificant. getting into a fairly consistent sleep schedule, remembering to take your medications on time, drinking enough water throughout the day, eating things that will make your body feel better during the day, and keeping your space clean before it becomes a depression room again are all amazing accomplishments.

[scribefindegil]

Tips for baking with brain fog

Brain fog in the kitchen can mean anything from forgetting an ingredient to accidentally skipping a recipe step, plus much more. Here's how to bake successfully, even when you're feeling foggy.

A useful article from King Arthur Flour (my beloved) on baking while disabled.

[thatgirlwithadhd]

Special Interest vs Hyperfixation

This post is about how I PERSONALLY have come to define these words. There is no clear consensus on the distinction, so I have made my own. I am not trying to control how other people use these terms or who uses them, so do not argue with me about that. You’ve been warned.

How are special interests and hyperfixations commonly distinguished?

Many people say that special interest = autism and hyperfixation = ADHD. I’m not a fan of saying, “This thing is basically the same in each, but we’re using different words based on which box you’ve been sorted into.”

Another way people distinguish is by saying special interests are long term/permanent and hyperfixations are short term. That’s a start, but it doesn’t really explain why one would be long and one short—unless they serve different functions.

My definitions are about the functions of these kinds of interests.

Special interests

I define special interest as a topic of intense interest to someone, usually an autistic person, that serves an important function: they are a way to organize/understand the world, one’s emotions, relationships, etc, and also a safe, structured way of interacting with other people/the world. Because they become integral to how one sees/interprets the world, people often describe special interests as part of their identity.

For autistic people who are not great at masking, their special interest might be the only thing they want to talk about. Sharing information about one’s special interest can be how people express affection (“I am trusting you with this important part of me!”) and could be considered a neurodivergent “love language.”

Think of Aaron in The Mitchells vs the Machines. He goes through the phone book calling people to ask if they’d like to talk about dinosaurs with him, and when his sister Katie is leaving for college, he expresses his anxiety and tries to make sense of what is happening by asking what happens to velociraptors when one leaves the pack.

Hyperfixations

Saying hyperfixations are just short-term special interests does not do them justice, and it doesn’t make sense! Special interests are about becoming an expert in a topic so it can serve as a secure base from which to approach trickier aspects of life. But hyperfixations often fizzle out after reaching the “expert” stage. Why is that?

Hyperfixations serve a different (also important) purpose: dopamine! It’s all about the thrill of the chase. The consumption of information at light speed. Chronically understimulated brains use hyperfixations as a way to produce more of the neurotransmitters they need so badly. This is why they often fizzle out once the game is complete, the show has been binged, or you’ve learned all there is to know on a subject: the novelty is what creates that first flash flood of dopamine that our brains find so delicious. I had more hyperfixations back when I was stuck in boring classes all day. My brain was desperate for stimulation.

Similarities

Both special interests and hyperfixations are unusually intense interests. Both of them can feel necessary for survival—because they are survival strategies developed by neurodivergent brains for surviving in a neurotypical-designed world! They both serve important functions that go beyond simple enjoyment or relaxation. And while special interests in autism have been pathologized the most, both hyperfixations and special interests—in whomever they occur—are often dismissed, bullied, or discouraged by people who do not see their importance and utility.

I’ve made it sound black and white here, but it’s not. These two can overlap. Hyperfixations often “mellow out” into special interests, special interests can produce happy brain chemicals. Also, in my experience, I’ve known more autistic people with special interests and more ADHD people with hyperfixations, and I will continue to talk about them largely in those contexts… but I am an expert on no one’s mind but my own. I don’t police who uses these words.

So, to sum up.

Special interest: an organizational framework for understanding the world and for understanding and navigating emotions and social relationships.

Hyperfixation: an adaptive response to chronic understimulation by “mining” a subject for neurotransmitters.

I get lost in my hyperfixations. I would get lost without my special interests. Both are important functions!

[thenightling]

A bit of trivia:  A lot of people don’t understand what it means to “Count sheep” to sleep. In reality it’s an Insomnia treatment method where you pick a random topic where there might be several examples that fit the criteria “Disney witches” for example or “Films that feature Dracula as a character.”  It can be anything at all.  "Movies with Danny Elfman musical scores.“  You don’t Google the answer.  You lay there and try to think of things that fit the topic you chose and count them. That’s how you really “Count Sheep.”  

[thenightling]

Pretty much, yes.

@feeling-kinda-sad-ngl​

[y-that-crazy-five-foot-two-chick]

So many good tags here, including but not limited to naming every Pokemon and every song in Taylor Swift’s discography on top of thinking up a storyline. I also saw a comment that said this method is designed specifically to distract the flavor of insomniac that stays up being anxious and overthinking everything, so things to keep in mind.

(I have been blessed to not have insomnia in my laundry list of ADHD symptoms, but for the rest of y'all, here ya go)

[crookedfandomquill]

New ADHD hack of the week:

If you’re suffering a bout of rejection sensitive dysphoria, a good bandaid on the bullet wound is to immediately go and do something to prove to yourself that you’re not a cringe fail moral worm of a human. Example: today I was late for work and my supervisor (very gently) told me I needed to notify her if I was running late. I went back to my office and, tears welling in my eyes, set up a small monthly donation to Wikipedia. And it actually made me feel about 30% better!

And, ya know, we should support Wikipedia if possible because it’s such a fantastic resource that hasn’t yet succumbed to capitalist internet rot, and as a writer and a super curious weirdo it’s the least I can do.

[theremina]

Screenshot of a tweet by Amanda Perera:

“Recovery from mental, emotional or physical burnout can take years. Even if you start prioritizing rest and you start living a softer life, your nervous system remembers the burnout and/or the trauma. Understanding this and being gentle and patient with ourselves is key”.

I just might have to print this particular pearl out and put it on the fridge!

[the-arthritic-autistic]

So I haven't been active for A WHILE. For a long period of time, I kept getting sicker and sicker. My new cardiology person (nurse practitioner, I think?) decided to prescribe me weekly IV infusions, and I'm FINALLY feeling more like myself! I've gotten back into houseplants and gardening, which I had to give up for a few years because of how sick I got. I also finally remembered this blog, so yeah. That's my life update for now. Hopefully this keeps up and I get to feeling even better!

P.S. My general practitioner is wondering if I actually have rheumatoid arthritis, or if it's all my hEDS! So possible blog name change coming up after I get a second rheumatologist's opinion?

[persepinesascent]

Hi, I know I have benefitted from having access to leading world experts on this here where I am, so please let me share their wisdom:

If you have hEDS, you should NOT:

- do not stretch like a normal person (or really much at all). Your muscles don't stretch when they're crazy tight. Your tendons and ligaments do instead. And that's not what they're supposed to do. That's literally why they're subluxing all the time. If you want to stretch, be very very warmed up (cardio), and roll/massage all your muscles out first. And then learn how to safely isolate and stretch the muscles you're targeting. As a former certified fitness instructor, I can tell you that everyone is doing this wrong.

- do not go to a chiropractor. This goes for everyone really, if you were to ask a medical professional. I keep my mouth shut anyway when normal people go to one, mostly. But if you have hypermobile joints and other EDS tissue issues, this can be EXTREMELY DANGEROUS. Never let anyone, even an OMT adjust you with any kind of sudden shove or jerk. I recently had to unfollow someone who is now in a full back brace after a their chiro appointment ended in an ambulance ride. Bc it's none of my business, but I absolutely could not stand to watch them go back to the chiro again. Please please please just don't. Learn muscle energy techniques from a PT or OMT to reset your joints instead. It's far easier, cheaper, and safer.

- do not do yoga. I know. It breaks my fucking heart too, but the experts are right

- they told me not to do Pilates either. I know. But they were right about this too.

- watch our for Thai massage or similar, or anything where someone moves your limbs/bones for you or suspends your weight by them. All massage can be a bit risky, since our bones are held in place more by our muscles than by any tendons or ligaments (this is not normal). Yes, it sucks and it's a painful existence, and some targeted massage is absolutely necessary, but careful is the name of the game.

- stop doing fucking party tricks. You're only hurting yourself more by further stretching out your unstable joints every time you do. If it doesn't hurt yet, it absolutely will eventually. Trust me.

- don't let anyone try diagnose you solely via the Beighton score. It's bullshit, and the best experts know it. Our muscles are too tight from working overtime to let many of us be that bendy all over all the time. The right diagnosis can be made from looking at and touching your weird skin, and scars. And your extensive history of joint issues. And the weird way you move and position yourself. And the fact that this runs in your family. And maybe a genetic blood test now, finally.

That's all I can think of right now.

And they still haven't figured out why we all have anxiety problems lmfao living like this truly necessitates hypervigilance about our own wellbeing.

[andromerot]

basically a lot of my problems boil down to me being really bad at waking up. and also really bad at going to sleep

[the-arthritic-autistic]

~After my Appointment~

Me, struggling to get out of my chair:

My doctor: Does he normally have this much trouble standing?

My mom: No, normally when he stands you can barely tell he's disabled.

My doctor: ...maybe take some steroids too.