Stolen from the lovely Etana: A rare unlocked post.

[wylddelirium]

30 Things About My Invisible Illness You May Not Know

Comments

[sabrinamari]

This was helpful. Thanks for explaining this part of your world to us.

[ladymandrake]

thank you for posting this. I know just doing that spends spoons you could be using on other activities.

[wendyblackheart]

re: 25 - My best friend always used to say that to me when I was super depressed. Eventually, it became my mantra. Years later, when she was sick or upset, I repeated it back to her, and she had forgotten she had ever said that to me. Its amazing how something you hardly remember saying or doing can affect someone.

[leathernomad]

Thanks for the info. Glad that hiking works for you.
Re. # 22 - "it's a bad idea to want to choose when you die." - May I ask why? I've been in repeated debates on this subject in the past few months, and I'm interested in others' perspectives.

[wylddelirium]

I want to be clear that the statement isn't how I feel, but an attitude I run into a lot.

I don't know how I feel about it.

There are some days that I hate the idea that I've done all this work and doctor's appointments and medications with side effects to just get hit by a bus.

There are some days when I wish I could just set a date, and die the way I want to, rather than just wait for the random event.

There are some days where I wish with all of my might that they figure out life lengthening technology in my lifetime, because 100 years doesn't seem like enough.

There are some days when I see people suffering and I believe with my whole heart that death is better than this.

And there are lots of days where I'm terrified that this undiagnosed *thing* is killing me faster than they can diagnose me.

I'm not suicidal. I just wish I had more control over that part of my existence, I guess.

[leathernomad]

I tend towards the "100 years isn't nearly enough" and struggle to understand the perspective from which it would be ok (and make sense) to choose death. Frankly, it scares the shit out of me, but I know (intellectually, and from others' explanations) that there's a time and a place for that choice. So, thank you for sharing your various thought. I hadn't heard the "all this work just to get hit by a bus" idea before really, so that gives me another perspective to grapple with.
Thanks, and thanks for the original post.

[madamruppy]

I have to hope that someday someone will figure out some of what is wrong. Even one little thing. I wish I could give you my spoons for real. I hope your aphasia is a passing symptom because it can be a bitch even if you can "control" it. Mine drives me batshit sometimes. I also hope that if I ever treat you as anything but normal that you slap the hell out of me and tell me to shape up.