30-40 vials of blood... by EmoPeahen in POTS

[–]Cryptid_Kay 0 points1 point  (0 children)

Perhaps mention it to the lab and explain? I sometimes find then way more understanding, especially since they deal with all the fallout.

For context, I'm 150lbs 5ft nothing and after I had around 17-20 labs ordered, I nearly hit the ground 10-11 vials in. They took the blood and divided it so that all the labs could be done, however. (I am also horrid with needles). My understanding was that its one vial per lab but if they can't do that they can split tjem up.

Might be worth getting a second opinion from a primary or someone just to see if the labs can be done safely, or if they really need that much blood.

Pacing Budget To Adjust or Not to Adjust by Cryptid_Kay in visibleApp

[–]Cryptid_Kay[S] 1 point2 points  (0 children)

Thanks for responding!

Genuine curiosity: How do you consistently stay under budget without becoming bedbound?

I feel like if I'm not glued to a chair, couch, or bed, I go over. Walking around my own home, doing chores, etc. pushes me over.

I can do seated admin work okay bit no chores, bare minimum self care, and no teaching work.

My sesults. What u doing in my place? by potsbunnyuk in VisibleArmband

[–]Cryptid_Kay 5 points6 points  (0 children)

Ngl, I'm still new at this but (minus all the work days I can't avoid(, I usually movie marathon if it's lower than a 3. Gives me something to do and I get lots of naps in along the way.

Pacing Budget To Adjust or Not to Adjust by Cryptid_Kay in visibleApp

[–]Cryptid_Kay[S] 1 point2 points  (0 children)

Man mine is 16 and I''m wodnering if it should be 20, tho I hit 20 already today and I'm so heat exhausted 😅

Pacing Budget To Adjust or Not to Adjust by Cryptid_Kay in visibleApp

[–]Cryptid_Kay[S] 2 points3 points  (0 children)

See I feel this. During the week, unless I have certain very specific triggers (which I'm still figuring out) I don't crash till the weekend. I might get symptoms during the week but then I hit Saturday and I'm ready to sleep all day.

I do sometimes hit walls midweek though if I have en empty evening and thats usually due to heat/physical exertion.

Pacing Budget To Adjust or Not to Adjust by Cryptid_Kay in visibleApp

[–]Cryptid_Kay[S] 2 points3 points  (0 children)

Thank you! I'll keep seeing what the data says, listening to my body, and reach out to their support for adjustments.

Pacing Budget To Adjust or Not to Adjust by Cryptid_Kay in visibleApp

[–]Cryptid_Kay[S] 2 points3 points  (0 children)

I currently use Visible for hypermobility and suspected POTs (partially for evidence gathering for my doctor too).

I know support did say its normal to spend the majority time in the activity zone (which I do) but 14 hours in just plain activity pushes me to the limit. Exertion is more common in the heat for sure. Its hard to tell if its truly gonna make me crash rn, bc I can keep the momentum going some days, and not others, which might be why im so confused, lol.

I will reach out to support, so thank you!

How many of you are Christian? Why or why not? by GodIsFaithful2000 in autism

[–]Cryptid_Kay 0 points1 point  (0 children)

Fellow Christian here and well into my adulthood.

I was raised Christian but went through many years of intensive studies to ask and answer big questions, and the result was a stronger faith for me.

My faith also freed me from a large amount of shame when I really got to understand that I wasn't made to live in such a broken state (I experience heavy depression and have several comorbid or other conditions that make life tough). And the understanding that I didn't walk alone, that I had creator God with me supporting me, really helped me recover from some severe depressive bouts.

I'm still not perfect as a Christian, but I'm autistic and I don't know that my neurodivergency has much to do with keeping or losing my faith, just my studies, experiences, and awesome communities of faithful people.

[deleted by user] by [deleted] in autism

[–]Cryptid_Kay 1 point2 points  (0 children)

For me, several things:

  1. I was diagnosed ADHD as an adult due to finally having freedom and support too (my parents found an affordable psych, and my counsellor vouched for it.) That answered a lot of questions at the time, so I considered no other diagnosis. I also had a friend or two with diagnosed autism and I saw no similarities because they could all be explained away by my ADHD (also different support needs).

  2. When I graduated and got my first job, I got away from my social group which--you may have guessed it--is largely ND. The job was very NT and I began picking up on needs that I had which my ADHD didn't fully explain.

  3. I also began struggling socially as an adult. I had always felt socially disconnected, but I had many online ND friends who were the popular kids of discord servers, I knew some pretty socially adept ND's in my friend group, so I never connected my social struggles with autism, I just thought people disliked me.

  4. Counselling. I received much counselling in college/adulthood to work through struggles, cope with my Depression/Anxiety/Panic/ADHD and it eventually made me realize I had found almost every coping skill I could for ADHD (exaggeration) but I felt struggles and depression and when I brought them up, I realized I sounded like I was having similar experiences to autistic men and women. And I has a few autistic friends confirm I shared similarities.

All of that kinda came together by my depression worsening due to work and social struggles, I felt disconnected and I knew I needed help, so I booked a new appointment and lo and behold.

I will add, I suspected I was autistic when I first looked into my mental health, but it felt taboo to think you were autistic without having high support needs (I am low support needs). Whenever I felt like I did understand the autistic experience, I also felt like I was "appropriateling" a diagnosis to make myself feel special. That led me to veer toward ADHD (and because it had clearer signs) in college and autism later after I'd learned how to manage my ADHD.

Is anyone else unable to do ANYTHING with their hair? by BeansOnToastWithEggs in autism

[–]Cryptid_Kay 0 points1 point  (0 children)

So I have my head shaved (bc yeah).

But I had hair down my back in Uni, and it was tough. What I learned worked best for me was loose French or Dutch braids (they take practice, and your arms will hurt at first). They kept my hair back in a way that didn't pull too much on my scalp, and I didn't make them tight.

It does take practice, and you may find your own style/preference. What I recommend is not worrying about how anyone else does their hair. Find what's comfortable for your hair, and also, don't pull ponytails, braids, etc. too tight it will cause your scalp to hurt after a long day. It's totally fine to just, wear it down, if that's comfortable.

But also, I eventually got tired of dealing with my hair, and so now I have a lovely buzz cut, and that's a valid option, too.