Tag: spoonie

Inflammatory bowel disease should never be misconstrued for someone having an eating disorder. We eat what our bodies can handle and we eat as much as we can. Never be quick to be overcritical of our eating habits because to you they may be unusual, but to us, they are our safe foods. We do not need a lecture on how to eat healthy or what we should be eating instead, but rather we don’t your input unless we ask for it. If one were to read up on inflammatory bowel disease, you would see we have to worry about several trigger foods. These foods oftentimes bring on our symptoms and are difficult for us to digest. There is a difference between telling us what to eat and asking us what we can eat. Learn about the inflammatory bowel disease first before you decide to sit there and dictate what foods we should be eating to work towards living a healthier lifestyle. We cannot eat whatever we want and we, as the patients, are very aware of the kinds of foods that our bodies can no longer tolerate.

Wade Sutherland (via fellowibders)

This is something I wish I could share with certain people. It’s hard not to come across as defensive or ungrateful when telling someone that you know better than them what your body can handle.

Last update of 2016

TGIFriday’s went well on Thursday. I had a nice gluten free burger and I got a free mocktail. Friday was good too so was today, although I did have a bit of a stomach cramp this afternoon. I am spending New Year with my fiance, sister and her fiance watching Dara O’Briain, eating pizza and drinking iced tea. I hope everyone has a good, safe New Year.

I’ve had such a good weekend

I slept in on Saturday (which I never do because I normally work on Saturdays) then went to meet my sister and her fiance (who are staying with us for a few days) at the train station, saw friends I haven’t seen in months for an early Christmas party and exchanged presents, and today (Sunday) me, my sister and her fiance went to a tudor museum which I haven’t been to since I was in school! We had Costa Christmas drinks too in the afternoon and then a big roast dinner with my fiance in the evening. Even though I am entirely out of spoons and in a bit of pain from eating too much/things I probably shouldn’t have, I had a really good two days. I hope tomorrow goes just as well; I’ve got my infusion in the morning but the afternoon is free so I want to spend more time with my sister before I go back to work on Tuesday.

Spoonie Care Package Project

spooniecarepackageproject:

WHAT IS THE SPOONIE CARE PACKAGE PROJECT?

SCPP was created with the goal of giving those with chronic illnesses and financial issues a little pick-me-up by sending them a care package filled with items tailored to their liking. These packages will be funded by donors who are in a good place financially and want to help those who are not currently in a place to help themselves.

WHO CAN RECEIVE A SPOONIE CARE PACKAGE?

To receive a care package, you must meet all of the following criteria:
– Must be someone with a chronic illness
– Must be at least eighteen (18) years of age, or have parental permission to participate
– Must have some sort of financial need, whether it’s being unemployed or in too much medical debt to be able to buy yourself small goodies
– Must live in the United States at this point in time

WHO CAN GIVE A SPOONIE CARE PACKAGE?

Anyone can be a donor, regardless of your age, health, and location!

WHAT’S IN A CARE PACKAGE?

Each care package will be put together with the receiver in mind. Things that you may see in a care package include: bath bombs, candles, snacks, stickers, socks, stuffed animals, and coloring books.

I WANT TO BE A DONOR. HOW MUCH DO I HAVE TO PAY?

One care package is $25. You can donate for as many care packages as you would like.
To become a donor, message this account for more info.

I WANT TO RECEIVE A CARE PACKAGE. HOW DO I GET ON THE WAITING LIST?

All you have to do is message this blog with the following information:
– Your name
– Your age
– Your address
– Why you would like a care package

WHO THE HECK IS EVEN RUNNING THIS?

The Spoonie Care Package Project is ran by @bendyandbroken and @flimsywrists

I HAVE ANOTHER QUESTION.

Feel free to come to us with any questions you may have!

Boosting!

Are you insulting your chronically ill friends?

chronicallyrebellious:

Some subtly ableist but common phrases you should avoid.

“Get better soon!”
Should be, “I hope you feel better soon, or your symptoms decrease!”

“I’m normal/healthy.”
Should be, “I am able-bodied.”

“You’re differently abled/unhealthy/not normal.”
Should be, “You’re disabled.”

“You’d feel better if you tried yoga/prayer/whatever.”
Should be, “What treatments have you tried?”

“Oh my god! What happened to you?”
Should be, “How are you doing? May I ask, why you are using mobility device/brace/cast?”

“I have headaches so I completely understand your chronic migraines.”
Should be, “I cannot understand your illness, since the worst I have ever suffered is headaches. Let me know if there is anything I can do to better understand you.”

“You should get out more.”
Should be, “May I come over sometime to share a meal with you or relax?.”

“It must be so nice not to have to work/go to school.”
Should be, “It must be difficult to not be able to have an income or continue your education. Let me know if there is any way I can help you pursue your dreams.”

“It’s so tragic that [insert media character] is disabled.”
Should be, “I’m glad to see the media is portraying a character that represents 70% of the population.”

“I would just die if I had your condition!”
Should be, “I don’t understand how you cope with your condition. Can you explain to me how you’ve accepted your disability?”

“I’ve been praying that God will heal you!”
Should be, “Would you like me to pray for your healing?”

“I wish I could take my dog everywhere with me!”
Should be, “I’m glad that you have the resources to use such a multipurpose mobility aid such as a Service Dog.”

[First thing you say to the person] “I have been praying for you! God has your health in his mind!”
Should be, “How are you? Do you need any encouragement?”

“You are such an inspiration because you are disabled and coping with it!”
Should be, any other compliment not having to do with their ability to cope with a disability.

“I’m going to push your wheelchair now.”
Should be, “Do you want me to push you now?”

“But you don’t LOOK sick!”
Should be, “All disabilities are different, do you consider yours to be an invisible illness? How does it affect you?”

“Hey, at least it’s not Cancer.”
Should be, “It must be difficult to accept such a lifelong diagnosis. Is there any way I can help you?”

Add more subtly ableist phrases or alternatives! Show people how to communicate with us without it being so awkward!