I tried to go through a local service that's very highly rated for eating disorder challenges, but they refused to even assess me because of my physical comorbidities. Like, I can't find a dietitian, they all tell me to go to my neuro. Like 3 years ago was my last round with a SLP, which is who the neuro sent me to- my insurance ran out for that and honestly I was also pretty tapped out/felt like it got useless. I've plataued in terms of recovery from nerve damage, but I'm still not done trying to improve my situation. My neuro told me to ask my GP, and my GP basically told me to Google it.
The short of it is that I probably shouldn't eat solid/non-modified foods because I can't swallow properly after GBS, but I've never been able to adjust to a liquid diet and no one seems to understand that you can't just throw shit in a blender and call it a day or live off protein shakes. I'm a young man and I start going literally insane that I feel like I'm never able to eat REAL FOOD. It's not like it is when you have to go on a clear liquid fast for 24hrs for a surgery prep. It's been YEARS and I'm going INSANE thinking about the rest of my life. At some point this year the magically addictive vice of chew/spit entered my life and I've been losing about 1lbs a week since by "eating" whatever I want without swallowing anything at all. It took me a pretty long time to even recognize that chew/spit is a disordered behavior and my own GP brushed it off and said she "couldn't see any issue with that." I am a reasonably atheletic male and none of it is a body image thing.
I want dietian advice, not a cuddly therapist and it just seems impossible to find what I'm looking for.
Yes they sell specialized dysphagia foods- Thick water is a meme for how disgusting it is, and in general all of those products are highly processed expensive crap made for memaw dying in the hospital after her stroke. Not for living off of. Most of the recipes I find online are pretty demented, and a lot of them are designed for bariatric diets or other, very temporary conditions, or very old people. None of them are designed for an active mid-20s man who is losing his shit over not being able to eat pizza and bbq with his buddies. I don't want split pea soup. I don't want blended meatloaf. I want to eat DORITOS. Every time I find a supplement product (i.e. meal replacement shakes) that's got good macros, tastes okay, and isn't too pricy, within a few months I'm so freaking sick of it I never want it ever again. Even as a kid I was never a big fan of milk or shakes, I've never been able to handle soy, pea, or whey protein, and I hate the taste of most artificial sweeteners- so I'm in pretty bad shape here.
Lately my diet is a lot of plain kefir (God bless, I never get sick of it), blended fruits+greek yogurt, I know how to make tuna/salmon/etc, chicken, or egg salad that I can eat, mashed potatoes, and I make soups and dump collagen protein in there. And ice cream. But all of that stuff is so hard to pack to take to work, and in general it's quite hard for me to figure out the logistics of eating a meal away from home. It can feel pretty isolating, and I really don't like to take food in public when it looks obviously pureed/like baby food. I like rice and other grains but definitely can't eat things like that without it being blended smooth, even cereals. There are a lot of things that are decieving: I feel like they'd be easy to eat, but they're also so easy to aspirate/choke into my lungs. It gets really embarressing when my friends make an effort, or assure me that I'll be able to find something to eat at the restaurant because they assume I can eat soups with rice, or eat ice cream that's full of chocolate chips and crushed nuts.
But it gets much, much worse when I choke at the table, and obviously I keep dealing with the worst part, the pneumonia stuff. Who gets pneumonia so often in their 20s? It's ridiculous that they just keep giving me drugs and sending me on my way. This is absurd!
I hope maybe some lurker gets use out of this somehow- I definitely haven't been able to find anyone else in this sort of position in life.