spooniesolutions

[spooniesolutions]

I’m putting in my too weak notice.

#I was exhausted *before* we began packing up to move ASAP

[spooniesolutions]

I know right -_-

How many times have I reblogged those "Your worth is not measured by your productivity" memes and tried to make myself take comfort in it when, you know what? I'm a person who is happiest when I'm productive. My problem was never (usually) about worth, but contentment and, frankly, pride.

Sometimes it's about internalized ableism but sometimes it's just about personality and/or using words that make more sense for you. Sometimes changing the language can make a real difference.

You're absolutely right that resting is doing something—it is productive! It is achieving things in your body and mind and your spirit, like healing and resetting and soothing and preparing. It's also a big win you can be proud of because of how hard it is to do this for yourself for a substantial amount of time, but you're doing it ❤️ It's not just a reward or an acquiescence. It's a strategic plan being carried out.

Staying true to my word and resting but!!!!!! Wishing I was Doing Something instead of resting. Which I know is doing something. But it feels like nothing and I haaaaate it.

#Rest #Anyway not to say I don't still struggle with the worth issue #But realizing this really helped me in the rest department #The power of words THE POWER OF WORDS

[spooniesolutions]

why are so many people more horrified by the fact that I have to take multiple medications daily than by the fact that I am in severe chronic pain every day? 

#Oh WHAT a mood #Meds

[spooniesolutions]

This week I'm forcing myself to rest. I've been neglecting rest for too long and I'm worried that it is going to start having long term negative effects on my health. If you have been waiting for a sign to slow down, this is it. Rest with me, even if it is just for a little while. 🐢

#Hope this week of rest is good to you #Energy #Rest #Exhaustion #Fatigue

[spooniesolutions]

not hungry not full but a secret third thing (gastroparesis)

#Gastroparesis #GI

[spooniesolutions]

Very rude that fun spoons are still spoons

[spooniesolutions]

Doing more than one? Choose whichever you found the most helpful. ❤️

[spooniesolutions]

the US Department of Transportation is now accepting comments on new rules for US airlines regarding disabled passengers!

"The proposed rule would require that airlines meet rigorous standards for accommodating passengers with disabilities safely and with dignity. The proposal will set new standards for prompt, safe, and dignified assistance, mandate enhanced training for airline employees and contractors who physically assist passengers with disabilities and handle passengers’ wheelchairs and specify actions that airlines must take to protect passengers when a wheelchair is damaged during transport. Notably, the proposed rule also would make it easier for DOT to hold airlines accountable when they damage or delay the return of a wheelchair by making it an automatic violation of the Air Carrier Access Act (ACAA) to mishandle wheelchairs."

you can read the complete proposal here, and leave a comment here! the comments will be open for 25 days as of today, May 18th. if you're American, even if you aren't disabled, please leave a comment, and if not please share this around!

#Wheelchair #Travel #Transportation

[spooniesolutions]

#Chronic illness #I try to hear the good intent and respond to that but... YEAH

[spooniesolutions]

I'm really tired of medical professionals who are dismissive of autoimmune flares, as though flares aren't completely debilitating and life-altering.

#I'll be praying for you today #❤️ #Flare #Bad days #Autoimmune #The absolute number of times they've made me feel like I have to pass a test called 'What constitutes a flare' #God bless the nurse practitioner who finally let me have a standing rx for prednisolone once she realized I know what I'm doing

[spooniesolutions]

I just saw such a great disability term I personally haven’t ever seen before and I wanted to share it with everyone so here it is:

Usable hours, aka the amount of hours a day someone has where they can carry out tasks (school, work, showering, cooking, household tasks, being out of bed etc.)

I don’t know why but this feels so revolutionary to me 😂

If I’m honest it changes a lot for me but on average I can manage 4-5 whereas a healthy person might have 10-12 usable hours. Otherwise I’m sitting on the couch scrolling and watching YouTube or resting in bed.

Some days I can handle more and sometimes a lot less depending on how much I’ve done previously that week/month etc. It also depends a lot on the type of tasks, I manage mental tasks pretty well and typically write a decent amount but physical tasks exhaust me much more quickly.

I know this is a lot more than some people but instead of focusing on that I’m trying to focus on how much less it is than a healthy person. Having half as much time in a day I can be functional as the average person and during that time I’m still exhausted/in pain/having symptoms/struggling in ways an abled person wouldn’t.

#The power of words #Usable hours #Terminology

[spooniesolutions]

Moment of silence for all the heat sensitive disabled ppl as the world actively tries to kill us this summer

#Hate you summer #heat intolerance #photosensitivity

[spooniesolutions]

I don't have spoons, knives, or any other useful utensils today. I just have a pile of silvery lumps that I am desperately trying to use as tools.

#Hope you are able to take it easy today 💜 #Chronic pain #Flares

[spooniesolutions]

This was the day 11 years ago that they took 26 vials of blood and FINALLY figured out that RA (& eventually Lupus) was what has was plaguing me all my life.

This was the beginning of SpoonieStrong. 💙🥄

#Happy Validation Day! #<-new tag? #Me when they finally did an MRI of my dominant hand and were like 'oh' #Autoimmune

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#:( #GI #Nausea #Stomach

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#⭐⭐⭐⭐⭐

[spooniesolutions]

Just over here trying to cut my pain pills into fourths to ration them

Totally normal behavior. Totally fine.

#Oof #Meds #Pain management