“I am so proud of you, 6 months ago you would have never asked if anyone was going your way so you could join them. Way to go!! How great that they ended up being your neighbors and also interested in medicine. Have a great day off tomorrow!

Love you, Mom“

Sometimes I don’t notice my own progress, but then people around me say things like this and my eyes honestly well up with tears because I want to get better so badly, and if I’m getting even just a bit closer, getting a bit stronger, it keeps my going. I’ve always been terrified of terrifying my parents, especially my dad. Being at college has strengthened my relationship with my parents, ten-fold. We’re like pen-pals now; I send them long emails about my day. That’s more than I’d ever communicate with them at home.

This is nice.

Just Spoonie Things

I managed the wash the dishes and load the dishwasher- they’d been slowly accumulating for two days now, and I’d been avoiding it. My trembling is pretty bad tonight, but I did it without dropping anything because I was very careful. I’ve reheated some leftovers and now I’ll just kick back and relax while I eat something. uvu

College Chronicles

Stickers on a chart seems like a juvenile system, but it is a good way of measuring progress, if only for a clear visual model. It’s a big, colorful way to let me know that I went another day where I remembered to take all of my meds and kept my apartment clean to a basic level. =v= If you want, you can make it a source of fulfillment, too. For no reason other than you begin to arbitrarily assign value to things you have to earn, I decided I earn a small sticker for every time I do one of the following: finish a project; unload the dishwasher, fold the laundry AND put it away, shower, some other chore that can be hard without adequate spoons or just in general because life is hard especially when you’re ill. My calendar is full of silly stickers and it helps me clearly see which day of the month I’m on, as well as have visual reassurance that I’m making it through each day, even though there’s a lot to do.

That Spoonie Feel When

You can’t live a normal social life because sensory overload is constantly looming over you.

I’m trying to cry quietly so my parents don’t hear me.

I’m so sick of being sick, and today it’s just getting to me more than usual. I have to keep asking my parents for more money to pay for all these doctors and medications- they’re giving me the money, but I feel so bad that on top of college they have to pay for all this crap. Six doctors, six prescriptions, scans and bloodwork… it adds up so much and it feels like I’m constantly in a doctor’s office being diagnosed with new problems while barely managing the current ones. I try so hard to stay positive but it’s just so hard being so sick all of the time. I spend at least $1,100 per month for medications and appointments and treatments. In a year that’s more than my college tuition. I feel like such a financial burden and emotional burden, but I can’t pay for all of this without my parents’ help. I can’t even make enough money to buy food for the month with my part-time job. 

I know I’m whining but it’s just so difficult and it’s really getting to me today.

I’m so sick of being sick.

I almost didn’t have enough money to pay for this month’s stock of medications because I was a clod and pre-ordered Happy Home Designer. It’s so expensive to just keep existing that I feel exponentially bad for splurging on luxuries. I’m officially broke as a joke. It doesn’t help that I got prescribed yet another medication today. That brings the grand total to six prescriptions, and then the vitamins I have to take are a whole different can of worms.

//insert spiel about how there’s a Donate button on my blog//

obscuruslupa:

justexecutivedysfunctionthings:

when your working memory is absolute shit garbage useless so you’re always forgetting appointments and the names of people you’ve met recently (and for about three months after you’ve met them) and verbal instructions given to you five seconds ago

but your long-term memory for things like obscure facts about your interests is so good that people get pissed at you for your short-term memory problems because clearly you’re just faking it, right? /sarcasm

oh my gosh me exactly

Even my parents treat my illness like a burden- they’ve been to the doctor with me and heard my diagnosis but still treat me like I’m pretending to be sick and in pain every day. As if I enjoy it. As if I use it to get out of doing things. It’s such a painful knot in my stomach to know that my parents don’t believe me or what I’m going through, and that to them it’s an inconvenience and I’m simply lazy.

Eating is really hard tonight? I’m just staring at the burrito. I don’t know why- I mean, I feel hungry. I want to eat. But I’m just looking at it and not doing anything.

Eating is hard.

gastroparesissucks:

Will eating make me feel better or make me feel worse? A spoonie autobiography.