#chronically ill
I cannot put into words how much I do not care about people who ‘fake being disabled for benefits’ cause a) it’s wildly blown out of proportion, is a very damaging rhetoric and is a huge waste of time and resources b) I do not trust the government to decide or be able to tell who is and who isn’t 'faking’ and c) if someone is going through that much hassle for such a comparatively small reward then they probably need the money and I’d rather they have it than not.
Oooohhhhhh PPPRRRREEEEEAAAACCCCHHHHHHHHHHHH!!!!
Also, do y'all know how BORING being disabled/chronically ill and not being able to do stuff can be? Every “normal” person quits after a few months because there are only so many movies/TV series to watch, online games to play, books to read, records to sort, cupboards/closets to empty and rearrange, stuff to do around the house, blankets to knit… Believe me. (Insertion: Would I be glad to be able to do all that.)
So you wanna go outside at some point. But guess what: Ppl will ask you what you’re doing outside during daytime when everybody else is working. So you should be able to explain what kind of disability you have. And then ppl will ask you: But… It can’t be that bad, you’re able to take a walk, so why aren’t you working?! Well… Believe me! You’ll only be able to have that conversation a few times before you get super annoyed and try to stay at home (because you’ll meet ppl who know you literally everywhere and every time you’ll have to explain that, yes, you’re still disabled/sick, and no, you’re not better yet, and also no, you’re still not able to work). But at home it’s boring again.
In conclusion: Even if somebody was trying to fake it, they wouldn’t be able to keep the scheme up for very long because basically, non-disabled ppl don’t have the eagerness to do it. It needs a lot of physical and emotional strength to be disabled - it is almost impossible to fake it over a long period of time.
How is everyone doing today??
It’s okay if you need to vent! This post is open to everyone. I genuinely want to know how you all are doing today?
So disappointing
Hey everyone! I have a question for you all.
For starters, I’ve been having issues with my heart rate for over a year now. In the past, I’ve had problems with pericardial effusion and pleurisy a few times. My heart has almost failed twice within the past two years. I can’t remember exactly when, but I’ll say around…April of 2021? Is when my heart rate issues became worse. My resting heart rate is 76 - 88; usually, this is when I’m lying down or sitting for more than 20 minutes. When I sit up completely, my heart rate will go to 110 - 125 or 136. When I stand, it goes to the 140s or 160s. After showering, my heart rate hits 180 - 191. So far, the highest heart rate I’ve had is 198. My symptoms for the past few months has been stomach pain, brain fog, nausea, vomiting, headaches/migraines, dizziness, lightheadedness, random blurry vision that’ll last for up to 10 - 20 minutes, chest pain, shortness of breath, skin sensitivity, painful red patches on arms, leg swelling, painful/uncomfortable bloating, weakness, fatigue, a few fainting spells, and much more but I can’t remember them all at the moment. My current diagnoses are Lupus (SLE), Rheumatoid Arthritis, TMJ, and Raynaud’s syndrome.
Is anyone going through this or has gone through this? If so, what tests were run or recommended? Did you get a diagnosis?
I really need to know. I’ve been dealing with this for so long now. It’s interfering with my day-to-day life and daily activities. I can’t even talk or laugh without my heart rate going up to 126. The lightheadedness and dizzy spells are happening daily, and I’m afraid that I’ll pass out. The stomach issues I’ve been having have made it difficult and painful to eat and drink. It feels like my stomach is on fire 24/7 and being ripped open every once in a while. My doctors think I could have another possible autoimmune disease, either fibromyalgia or a connective tissue disorder (I dislocate almost daily). I’m not trying to self-diagnose myself, but I’ve been wondering if POTS could be another possible diagnosis? From what I’ve been able to research, the symptoms I’ve been experiencing are pretty similar, but I know Lupus can be the cause behind a lot as well. I also know that Lupus can be the cause of POTS. I just want to find out as much as I can to bring some things up to my doctors since they’re just as confused as I am, haha. I’m tired of dealing with this and need relief.
Sorry for being MIA! I’ve been battling with my health for a while. I may finally have a new diagnosis for what’s been going on!
I am in so much pain today. My mental health is taking a hit too. I have no one to vent to since I’m the “therapist” or “sunshine energy” friend, and no one wants to hear about my issues. They’ve shown me that… I feel alone at the moment. I try so hard to keep up my bubbly and optimistic persona, but it’s hard today… it’s hard to smile genuinely. It’s hard even to think that this will get better. I’ve been in a full-blown lupus flare for two years, which has caused my health to decline rapidly. I’m a very independent person, so losing my independence slowly is fucking with me. I’m on the verge of a breakdown. I just want the pain the stop…I want to stop feeling so tired and weak…I just want it all to stop.
I like to have this saved in my phone so I can show friends, family, or random people who are curious to understand the spoon theory and for them to get a better understanding of what we have to do/think about every day.
My spoonie name is Cancel-y VonYogapants! Lol seems about right.
What is your spoonie name??
To the people who couldn’t get out of their bed today, I’m here for you…
To the people who skipped showering because they didn’t have the energy, I’m here for you…
To the people who cried in agony through their shower, I’m here for you…
To the people who suffer daily but no one believes them, I’m here for you…
To the people who feel like they’ve lost or are losing their youth to their medical issues, I’m here for you…
To the brave people fighting for their health every day, I’m here for you, I support you, I believe you. Your feelings are valid, you are loved, and I will stand behind you.
Hey guys, gals, and those who are both, neither or somewhere inbetween. I’ve heard there’s a legend that if you go to a mirror after midnight, but before three in the morning and chant “vaccines are real, my disabilities are valid, and wearing a mask helps stop the spread.” Karen will jump out of the mirror and try to sell you essential oils and peddle some pseudoscience about carbon dioxide poisoning in masks while her unvaccinated son (who has polio) asks if you have games on your phone.
Took a mental health break but I’m back again!
Turns out my hernia may not be a hernia and is likely a gastrointestinal issue, as there’s Crohn’s disease in my family this has worried me a lot.
On the bright side, I’m now being genetically tested (properly instead of just talking to someone about it!) so I’ll finally find out about what type of EDS I actually have instead of their best guess. Looks like it might be classical but I’m cool either way. I’ll also be finding out about a lot of other things through this test so I’m pretty happy about it!
“Just do yoga! Your health care team don’t know what they’re talking about!”
Me after trying yoga:
Workout For Daily Life
Reblogging for the neck pain ones… whoa Nelly, do I ever get the most killer neck pains.
if youre hypermobile or have eds be careful with some of these
Having EDS and having no gauge for how far you’re meant to stretch.
“You’re telling me I’m not meant to touch my shoulders with my head during the head tilt? Next you’ll be telling me my wrists aren’t meant to click like this!”
Post link
I know it’s not the worst aspect of being disabled, but I loathe the sheer amount of rubbish I generate from all my medication boxes and blister packs, and a lot of it isn’t recyclable
one day I’ll scroll lupus tag and won’t have to go through tons of generic wolf pics or furry art just to see like two relevant posts
It’s ok to be disabled and still want kids. It’s ok to not want kids because you are disabled. It’s ok if you just don’t want kids.
Maybe you’re newly diagnosed with Fibro, or ME, or EDS, or some other chronic condition that’s knocked you off your feet. You might be staring down the barrel of what life might look like for you now and wondering if you have to give up on your dreams of having a family. You might be wondering how on earth you will be able to keep up with your kids. Look, I’m going to let you in on a little secret. Nobody can keep up with their kids. Not even the ableds can keep up with these little balls of dynamite. My kid is not even walking yet and she gets into everything. She tears around the house on her hands and knees and pulls herself up on stuff and chases the cat and everything a curious little child is supposed to be doing.
This is what baby proofing is for! She’s safe. She can explore all she wants. We have baby gates, the furniture is anchored. We don’t leave out stuff that would be unsafe for her and we make sure the floor is clean to reduce the amount of lint she shoves in her mouth. We have a open floor plan and I can keep an eye on her at times, even if it’s a bad pain day and I’m mostly parked on the couch. We read books and cuddle and talk and sorts of other wonderful things.
If you are thinking “I can’t take care of a kid, I can barely take care of myself,” I would say that’s a valid point, but not one that you can’t address. You will build coping skills and learn your way around your body’s needs and figure out work-arounds for all the things you need to do to lead a healthy, balanced life (whatever that means for you). It will take creativity. It’s a process, and one you should be undertaking anyway, whether you are planning for a family or not. And you don’t have to figure it ALL out before baby arrives. Life will always be a work in progress.
My kid is still little. I know there will be new challenges. But think back. If you had a good parent, what was it that made them a good a parent? I promise you it wasn’t “My mom climbed mountains and ran around with me at the park.” It was “My mom held me when I cried. She supported me. She believed me when I needed her to. She was patient and fair and encouraging. She sat (sat!) in the front row at all my dance recitals.” And if you had a painful childhood, these were probably the things that were missing.
Also keep in mind, you will probably have help. We all want to believe that we will start a family with a supportive partner that sticks around, and I definitely recommend it if that’s possible. But other types of families exist. Maybe it’s you, sometimes your ex-partner, and a supportive grandparent. Maybe it’s you and a close friend your kid takes to calling “auntie.” Support makes a big difference and it’s ok to say yes to the help that’s out there.
Another thing I wish someone had told me before having kids: they don’t just take energy from you, they give you energy back. Loving my daughter is the most energizing thing in the world. I am filled with joy every time she looks at me. I would do anything for her. If your baby needs you, you will dust off the old stash of spoons you didn’t even know you had.
Dear Chronically Ill,
You won’t get better, but you will get better AT being sick. You will raise your baseline slowly with healthy habits. You will get ahead of what you need, you will learn your body, and you will laser focus your priorities until you can manage.
Hang in there,
Your Future Self
