#chronicallyliving

[deafgaming]

To the able-bodied folks who get tired of accomadating disabled folks: remember, we have to do this ALL the time. It’s not like we enjoy “making it about ourselves.”

Access is trialing and exhausting; try to meet us halfway.

[symptomsofaspoonie]

TMI

Let's get a little up close and personal. I have an undiagnosed GI problem. My specialist stuck a camera down my throat and up my butt, then told me he hadn't a clue. My symptoms don't meet the criteria for IBS. I've been tested for Crohn's and celiac, among a couple other things that I can't remember the names of (lol). All tests coming back normal, except I do have inflammation in my stomach and I also have GERD. SOOO... If you happen to read this, have the same symptoms and have been diagnosed (or even not) please feel free to comment because I'm at a loss and at my wit's end.

🚨Caution 🚨 This may get gross. 😂

Where do I start? I have had issues with eating without ending up in the bathroom for about 13 years now, or so. The smell of food seems to start up the process sometimes. I definitely cannot eat when having an episode, or I will for sure regret it. It doesn't matter what I eat, I end up crapping it all out. It's amazing how much shit your body can hold, for real.

But here's the kicker. It doesn't happen ALL of the time. I can go weeks where I am fine. Well, I could until I had my son. Pregnancy helps it, however with my son I got the Makena shot and then my symptoms came back and haven't went away since.I have good days sometimes, but for the last 3 years I haven't been able to eat.

Here's another kicker, I can (usually) eat at night and be completely fine. Starting around 7 o'clock I can eat like I'm trying to win an eating contest, and no visits to the bathroom the rest of the night.

Again, it doesn't matter what I eat. No specific food triggers these episodes. It feels like having the stomach flu. How do I know? Because I happened to go to the doctor and she wanted a stool sample. Results came back I had the stomach flu. I asked the nurse if that can last for 13 years, and she was baffled. 😂 She says Well no, but right now you do have it. Interesting, I couldn't tell.

It sucks every ounce of energy out of me. They say the gut is the center of everything... Well I wouldn't be surprised. I feel like I've been drugged (and not in a good way) when I have these episodes. I can't think straight, I can't concentrate, and sometimes it's hard to even speak because talking takes energy I don't have.

Yet doctors brush this off like it's nothing. "Why don't you work?" How am I supposed to work when I can't keep food in me to give me energy to do anything? When breathing on its own seems to be too much. My muscles feel like limp spaghetti for Pete's sake! My stomach feels like it's been stuck in a wood chipper... But yes, excuse me while I get a job that I'm sure is just going to slowly kill me. Or at least make me want to die. My mental health isn't important, right?

If you experience this too, please let me know. I've done research on so many possibilities, like my pancreas, but was disappointed to see my doctor had done a blood test and it came back normal. However, I have read blood tests aren't good diagnostic tools for anything to do with the pancreas. What would I know though, I'm not the doctor. And getting doctors to listen to you is like pulling teeth. 😣

I need hope for an answer. 🤒

[dreaming-up-aces]

chronic illness when you're young is such a paradox.. especially when you're undiagnosed

chronic illness when you're young is being called lazy for your exhaustion, when it's uncontrollable

chronic illness when you're young is wanting to call in sick to work because you feel so bad, but knowing you can't because you look and act fine

chronic illness when you're young and undiagnosed is buying over-the-counter meds almost weekly and hoping no one notices and accuses you of being an addict

chronic illness when you're young is wearing granny panties and leggings and always feeling too casual but it hurts to change

chronic illness when you're young is wanting to go out with friends but all you can handle is a movie at home

[healingmoth]

I know people are genuinely worried about me when they ask “is your cane a fashion statement or is something actually wrong with you” but like- please don’t say this. It feels icky to me when you say it and it borders on being ableist. 

Like it’s hard to describe how I feel when people ask that, but maybe invalidated, nervous and uncomfortable?

[raspberryrose6]

That fibro thing where you can never think of the right word for something so you say the word that feels right and end up calling flies ‘raisins’ and your watch your ‘phone’ 🤦🏻‍♀️

[anonspoonie]

Self medicating with coffee and terrible reality tv - if anyone is up feel free to chat to me I have a long train journey ahead of me

[deafgaming]

"You don't smile a lot" 

Yeah, chronic pain does that sometimes ¯\_(ツ)_/¯

[thedailycrapwithibd]

Having a chronic illness is never easy but believe in yourself because you CAN do this & you are NOT alone!!!