Mew.

My knee is screaming because... Rain? And every finger joint, plus my hands/wrists hurt because I played *checks notes* an hour of video games? Ugh. Hopefully sleep will help.

On the plus side I have a neurologist appointment for my dysautonomia in October so hopefully I get a diagnosis. My NP also fully endorsed genetic testing so that's in the works, too.

It  seems I hear a lot obout sensory issues going the other way, and I do experience that to an extent. But my brain's constant need for input is wearing me out today so I wanted to talk about it, even to the void.

I can't have the same meal twice in a row, even things I really like. So say we have pizza for lunch, I will eat it the next day but it won't be my dinner. To a certain extent, I can't have the same meal too many times in a row as far as days go, or I will burn out on it and won't want it again for a long time. The best example I have for this is that the only way my mom would make salmon is lemon pepper, and my dad was Catholic and doesn't liek white fish so it was either some tuna dish or lemon pepper salmon every Friday in Lent. I then didn't eat lemon pepper anything for a decade.

I also very much enjoy spicy and sour things. I love to try new foods. This is great, mind you, but like meal plannig would be easier if I could just eat ramen every lunch without being afraid it would be the BAD FOOD if I have it too often. I solve this by getting multiple TYPES of ramen and that helps. (Ramen isn't great usually but I have POTS so the extra salt is actually good for me).

But as far as the downsides...

1)I almost always have a song stuck in my head. It's like jukebox echolalia IDK. Right now it's "Where Have All the Cowboys Gone?" Because I made a joke to myself when I read something a few days ago that was like "where are all the ____?" (IDK what we were asking where were, now).

2) I can't just sit doing nothing/ with my own thoughts. I can meditate but then it is like focusing on my breath? But otherwise I have to crochet/read/listen to or watch something/ do a word search/ play a game (or a combo of these). This can be exhausting with my brain fog. I can't concentrate but my brain is like I must!

3) Falling asleep is a nightmare. Sleepcasts can help but usually I tell myself a story to fall asleepo because it is some sort of input? All with my sound machine chirping in the background. (Frogs and crickets).

I walked to the bathroom in my house, leaving my wheelchair in the living room. On the way there I was woozy, drunk feeling but ok (due to dysautonomia, not booze).

One step out of the bathroom to return to my couch, bam, meet the floor.

And my wheelchair was in the living room. Spouse was at work for 3 more hours. I came to wrap as a kitten and did NOT want to try to stand.

So... I army crawled, kinda. I grabbed a cane that happened to be leaking in a corner in front of my face and tossed it ahead of me.

After many breaks I was in cane's reach of my wheels. I hooked it and dragged it over, knocking a folding step-stool on my head in the process.

Them the dreaded floor transfer but I did make it up in and over to the safety of my throne (couch).

Cleaned out the car yesterday (seated of course) and then fainted twice. Missed my son doing marching band which I already missed Monday b/c I couldn't get out of the house.

Fainted again today because I walked like 15 steps to check the mail (hanging outside the front door).

Then my mom asks Everytime if I'm feeling better. And why haven't they fixed this yet. And like...

Not getting that it might be improved upon but not fixed.

Then I know the cardiologist will say have I been exercising and like. What am I gonna say? Yes, and it makes me faint?

However, I am having a really hard time sitting up for 8 hours! My brain goes fuzzy a few hours in.

Luckily it is a very very easy job but like ugh...

But ripping it off will feel worse.

Snails!

I was able to get my butt outside for a few minutes and found a couple snails! I love snails and feeling them nibble on me. Gained spoons!

They did a bunch of tests and discharged me. I'm not dying so they don't care.

I won't be able to feed myself or use the restroom while my spouse is at work but... Not dying?

They also heavily implied that it's in my head, so fun.

In trying to figure out if I have POTs (all signs point to yes, but getting to a cardio is being impossible) it kept mentioning EDS as a co-morbidity. But I was like I am not hypermoile...

Both my knees can 'go backwards', so can my elbows

I am flat-footed (who knew this was tied to that?)

My thumbs can touch my wrists (TIL< why would I have done this otherwise?)

My ankles are very subject to rolling/ spraining and bend outside the normal range

I bruise like a banana (esp. my legs)

Snap, crackle and pop! (knees mostly but others can too)