Counterpredisabilitarism

[genderjumper]

It's been over 10 years since I was diagnosed gluten-intolerant. I have what my nutritionist called "silent Celiac", in that my body doesn't really know gluten is bad for me; we just happened to catch it and confirm it after some irregular bloodwork. I don't have to sweat cross-contamination the way most Celiacs do; just avoid wheat and everything is fine.

But wheat is everywhere, as are other allergens new and established. I've spent a significant of the past decade relearning how to eat, how to plan, how to prepare, how to keep my dietary limitations from becoming others' problems.

But I've also spent a lot of that time exasperated, under-resourced, and falling apart when something doesn't go the way it needs to. When the backup plan falls through, or there is no backup plan. When one little detail throws everything out of balance.

And I'm just now starting to admit that this amount of effort just to be able to feed myself is a burden in my life, and that if it were easier to accommodate, my quality of life would be a lot better.

In other words, I'm finally starting to understand why Celiac Disease is considered a disability.

Comments

[flamingsword]

*hugs*

I’m sorry you’re experiencing further disability, even if I am glad to not be alone in my dinky little boat on a big ocean. Thank you for sailing beside me, even when our stuff doesn’t match up.

[genderjumper]

I've learned so much watching you sail, how could I not?!

Diet Spoons

[nyyki]

Expending spoons in finding food that won't kill yourself is a much higher drain on psychic flatware than it seems. The kidney disease period, lasting eighteen years less a couple of months, was a sure way to wear me out, and with the progression to end stage the low energy also made it worse. The long span of avoiding potassium and to a lesser extent phosphorous and calcium was often more than what I could handle by myself -- I was protein loading as often as I could, and a renal diet isn't a healthy diet, it's a survival diet. And of course the inexpensive things were bad for me, so it was a financial hit to be able to feed myself.

I know this sucks, and I also know how tiring the constant effort to learn more is taxing too -- I found in that eighteen year span that the dieticians often didn't have the information I needed, and in many cases what I got from different people was different information that contradicted what I'd been told before. The web is not a reliable source for information either, so where can you go to get the real deal? Frustrating. I hope you're getting much better information.

Re: Diet Spoons

[genderjumper]

Sounds like there are a lot of backstories there, but this really stood out to me:

"I was protein loading as often as I could, and a renal diet isn't a healthy diet, it's a survival diet."

I'd never heard of protein-loading as a renal diet (or is it the other way around?) but this is exactly what I did for the past 11 years. It's only been the past 6 months that I tried to rebalance things with more deliberate sugar intake (as I said below, I think I swung from one extreme to another when I had to give up gluten) and find hunger much more manageable. I think I'm eating half what I used to.

And I only tried it on recommendation of a dear one who is a self-taught expert on the ways EDS and hypermobility change our diets (I am not diagnosed, but have many of the symptoms, as well as the ol' neurodivergent charm).

It means so much to me to be able to compare notes, even when our experiences aren't the exact same.

Re: Diet Spoons

[nyyki]

One of the things that gets filtered out in dialysis is protein. So renal diets involve more of it, and here's the part that fouls the line for some people -- plant-based protein has things that don't get filtered out, like potassium and phosphorous. I realized something was amiss when my potassium level got high enough that my nerves were hyper-responsive so that any touch hurt -- the next step from there is the cardiac nerves seizing up, and that's heart failure right there. But yeah, brown rice and also wild and other non-white variants are on the no fly list, ditto for wheat bread, OJ, most nuts, most legumes, corn, salmon, and a long list of other stuff. Every dialysis session in the first few months I came in with questions for the dietician, and after about the third time she'd have go look things up. Oh, and I also don't drink anything with caffeine, so that was another confounding factor.

Yes ...

[ysabetwordsmith]

Among the key things that make up a disability are the extra work, how everything takes so much longer, how the world is not made for people like you, and how exhausting all that is. It's not just about the things you cannot do, or are unsafe to do.

OH, HEY, A VISITOR! [tidies up the place]

[genderjumper]

Thanks for stopping by and commenting. Your solidarity is greatly appreciated. I hate how much of this stuff I knew in principle but not in practice...

Re: OH, HEY, A VISITOR! [tidies up the place]

[ysabetwordsmith]

I'm happy I could help.

Not a lot of people talk about it. gimpy and access_fandom are a couple options here on DW. Mostly it's just watching for other disabled folks and/or blogs that have a lot of disabled people in the audience.

My body has its issues but I rarely talk about them. However, I do write a lot about characters with disabilities and ways of working around challenges.

Re: OH, HEY, A VISITOR! [tidies up the place]

[genderjumper]

Thank you so much for the recommendations! As someone who tends to exist outside fandoms, I was unsure about access_fandom, but I am pleasantly surprised to see how most of the recent posts are about virtual conferences! gimpy, however, appears to be dead in the water, with most recent posts (or perhaps recent accessible posts?) over 15 years old.

Re: OH, HEY, A VISITOR! [tidies up the place]

[ysabetwordsmith]

>> Thank you so much for the recommendations! <<

I'm happy I could help. There's also a master list for followfriday with thematic community posts.

>> As someone who tends to exist outside fandoms, I was unsure about access_fandom, but I am pleasantly surprised to see how most of the recent posts are about virtual conferences! <<

Yay!

>> gimpy, however, appears to be dead in the water, with most recent posts (or perhaps recent accessible posts?) over 15 years old. <<

It listed the last post as 5 weeks ago, so likely posts appear only to members. According the profile, membership is open, so you could subscribe to see if that makes things visible and then whether they are of interest.

Re: OH, HEY, A VISITOR! [tidies up the place]

[genderjumper]

Makes sense. Thank you so much for taking the time to show me around!

Re: OH, HEY, A VISITOR! [tidies up the place]

[ysabetwordsmith]

I'm happy I could help.

By the way, dialecticdreamer is hosting Magpie Monday today, with a theme of "Change," and she writes disabled characters quite well if you'd like to drop by and request something.

[sabethea]

Ugh, I’m sorry. Dealing with working out what you can eat, and where to find it, and what this means for if you’re travelling anywhere, or staying with anyone, or anything you eat as part of your regular diet changes its recipe, is so exhausting. You’re suddenly aware that we eat every day, several times quite often, and you can’t just not.

I’ve only had issues for a couple of years and it’s been a nightmare, so yeah. Definitely disabling. And if something disables you, it’s a disability.

[genderjumper]

[belated hugs]

One of the strangest things has been realizing after over a decade that I probably over-corrected on sugar/carbs and things feel way more regulated if I consume a deliberate amount of sugar every day. Now figuring out what that amount is is a whole other hassle...