Living Chronically Loud

My name is Maria. This blog is about chronic illness. You’ll see a lot of posts about Fibromyalgia, Gastroparesis, Hasimoto's disease, Migraines, Chronic Fatigue, Endometriosis, and more.

[chronicpaingirlie]

there is so much grief in losing things you love to your disability

[masaotheheckindog]

I hate how ableds think we all aspire to walk without assistance. Like I can walk, but it causes me extreme pain and reduces my energy level for days. Mobility aids aren’t a tragedy; they’re liberating.

[newhologram]

My Chronic Illness Changed Me & That's Okay - Joanna No Banana

Did your chronic illness change you? Check out this article to learn about how chronic illness changes a person & why that's okay!

When many chronically ill people become chronically ill, they assume it’s just another sickness that they’ll recover from without any issues. The symptoms arise. Days go by. The doctor either blames it on anxiety or offers some medicine that doesn’t work. Months pass by. Things may be getting even worse at this point. Sometimes years will pass by before we figure out that this is something that’s not going away. It’s difficult to accept this. All of a sudden, our dreams, our goals, and what we’re physically able to do is changed. What once used to be a relaxing shower, is now a difficult task that may need assistance. Meals used to be so exciting but now it’s a difficult chore. Things become so much more difficult and complicated. Our lives are forever changed.

What makes the process of grieving our old bodies even more difficult is hearing comments about how others are waiting for the “old version” of us. As if, we aren’t the same people we used to be. In some sense, I suppose that’s true. We can’t do things that we used to do. We view the world differently now. We’re much more aware of medical gaslighting, accessibility issues, and the ableism in this world. However, that’s not really what people tend to mean when they ask for the “old me.” When they ask for the “old me,” it feels like they’re asking for me without my chronic illnesses. It makes it sound like my new accessibility needs are a burden. That makes me feel like a burden even though I know that’s just ableism.

Our friends and family are also affected by our chronic illnesses to some extent. They may need some time to better understand our current situations and that’s okay too. However, saying things like “I could never live like that” is unacceptable. Implying that our lives are worth any less, either by their words or by their actions, like deciding to leisure travel during a pandemic. If you’re a friend or family member of someone with a chronic illness, we’re looking at you at this time to see how much you value our lives. Do you say things like the high risk should just stay home and everything else needs to open back up? As if this pandemic won’t leave many people chronically ill/disabled?

It’s important for both chronically ill people and their family/friends to accept the chronic illness. Ask the chronically ill person how you can help them. Being chronically ill is expensive. Can you afford to help with groceries? Being chronically ill is tiring. Can you offer to help run an errand for us? Being chronically ill is lonely. Can you reach out and have a conversation with us even when it includes our chronic illness? Ask us what we need. Even just being told that you’re there for us means a lot.

I’m never going to be the “old me” again and that’s okay. While my chronic illness brought a lot of new struggles and difficulties into my life, it’s also morphed me into someone who has a brand new outlook on life. I no longer worry about the little things. I don’t constantly stress out about things I can’t change anymore. I put my limited energy into things that I truly feel passionate about. I’ve met the loveliest people due to my chronic illness. I’ve learned a lot about the medical field and different chronic illnesses. I’ve learned about ableism and disability rights. I don’t want to be the “old me” again. She feels like forever ago. Certain things are harder now but I’m happy with this life as well. Becoming chronically ill doesn’t mean only positive changes, but I’ve found some positive ones in my experience. If you’re chronically ill, I hope you share my sentiment. If you don’t, that’s okay too. Please just remember that no one should be pressuring you to be somebody who you aren’t anymore. I hope the “new you” finds comfort in this.

[positive-percy]

General Wellness Check

When was the last time you ate or drank something? If it’s been a while (my self-standards are 5-6 hours for food and 1-2 hours for water), please make an effort to get some.

When was the last time you moved? If you’ve been in one position for a while, I suggest perhaps walking around the room a little, moving to a different spot, adjusting the way you’re sitting, or even just stretching your arms.

Are you able to get some fresh air? Is it safe and viable for you to open a window a little or step outside for a moment? If not, may I suggest lighting a nicely scented candle?

How’s your hygiene? If it’s been longer than you’d like, please make a commitment to take care of it soon!

When was the last time you spoke with someone you care about? Consider reaching out to them, and letting them know they’re in your thoughts.

Have you been interacting with things that are damaging to your mental well-being? If you are, please stop! Purposefully interacting with things that cause you emotional or physical distress is incredibly unhealthy, and a form of self-harm.

Do you need to take your medication? If so, please take it.

Are you holding tension in your jaw and shoulders? Relax it.

Remember that you are important. You have infinite value, simply because you exist. I’m grateful to have you here on this planet with me. You deserve to take care of yourself. You deserve to be happy.

[whatshouldwecallchronicillness]

When I have my whole medical history memorized...

[whatshouldwecallchronicillness]

When I’m having a MCAD flare up...

[coldgingerale]

hi everyone. i never thought i would be in this position but- here i am.

cam and autumns home and healthcare fund, organized by Cameron Banks

Hi there, my name is Cameron. You can call me Cam. I have been living with my f… Cameron Banks needs your support for cam and autumns home a

there is more information there. but- my girlfriend and i are technically homeless right now. we are somewhere safe. every little thing helps. we have no furniture, i was recently diagnosed with an illness that is untreated and we have four cats. if you can’t donate- spread the word. thank you guys very much for your time and consideration, it means more than you know.

[newhologram]

Again, this is not saying “disabled ppl have it worse so if 2020 was hard for you, you’re weak” or something. It’s really important to give the disabled community space to talk about this reality. (The whole “disabled people talking about their hardships is just MAKING EVERYTHING ABOUT THEM AND HAVING A PITY PARTY” is an ableist microaggression topic for another time)

This is, “Hey, so millions of vulnerable people already go through this alone while the rest of the world mostly ignores them. They don’t get help with basic needs or even help coping, they’re told to suck it up because life isn’t fair and they’re just ‘letting disability win’ by not being able to power through debilitating flare ups. They are blamed for the restrictions and challenges that come with not just having a disability, but by living in a society that looks the other way.” 

2020 made a lot of people aware of that, which is already creating waves of change. But it’s important to realize and remember that when life eventually goes back to “normal” for nondisabled people… it will never, ever go back to “normal” for disabled people. This HAS TO CHANGE. If it’s a problem for disabled people, it will be a problem for you too, as COVID-19 has taught many people. Whether it’s another pandemic (Goddess forbid), or when you yourself experience some level of disability (it’s a spectrum, and unless you’re literally Krishna, you will most likely eventually experience a form disability by the time you’re a senior).

If you still feel personally attacked by disabled people speaking up about this incredibly important issue with our society, with our framework, with our large-scale selective empathy, then I don’t know what to say. Other people talking about what is hurting them is not a judgment on you and your challenges this year. What’s hard for you is hard for you! 2020 was brutal! Let yourself have that, okay? It was hard. 

But it’s exposed so many holes in our system and in how we relate to each other as humans. No one listens to us when we try to talk about these holes, they think we want handouts or pity or attention. But suddenly the whole world is going through something very similar to it, together, and we say, “See! That! That’s what hurts us! That’s why disabled people are kept in poverty and struggle mentally and emotionally! That’s why we have a high suicide rate!” and then people reply with, “not everything is about you!” wtf?

I’ll say it over and over again because it’s my mission to keep it from happening but: disabled isolation in my early 20′s nearly killed me. Many don’t make it, because it’s really that hard to be isolated so much because of your health. It’s hard to cope with so much pain even if you do have a good support system. Pain fucks with your head and your heart. 

So can we please start acting from our hearts? Can we please do our part to make sure no one is left to fall anymore?

[earlgraytay]

It makes me feel like a total ass, but one of the most strangely heartening things about this year was realizing that *everyone* goes a bit feral in isolation and my inability to wear real pants was not a me-problem.

[newhologram]

Yeah, that’s a BIG mood. 

[whatshouldwecallchronicillness]

The best part of the day...

[omghotmemes]

They became what they despised

[gaydaryl]

keep a disabled guy warm

we’ve got £7 to last us until next saturday. the monday after that is my birthday and i’d really like to be able to have, like, heating, and food for it, so if you happen to have anything to spare i’d be forever grateful.

ko-fi

paypal

ca$happ

[howjuderolls]

Someone very important to us is in need of some help. Tyler is a disabled trans person of color. He lives with several mental health conditions and chronic pain. Right now he is doing an intensive outpatient program for his eating disorder and is not able to work as much do to this and chronic pain flare ups. He is in need of support to buy food, items that will help with his chronic pain and bills. Please donate if/what you can and share. Thank you! You can donate through this money pool or to him directly through Venmo and cashapp

Cashapp: $vudukidd

Venmo: @vudukidd

Tyler is a disabled trans person of color and In need of some support. He lives with several mental health conditions and chronic pain. Righ

[pokemon-personalities]

Happy holidays to everyone whose holiday isn’t what they want it to be. whether it is illness, poverty, distance from loved ones or something else that’s making things tough for you this year, i hope that you can find peace and warmth. i hope that your year will end and start on a brighter note

[acurvypixie]

I hurt all over today. 🤦🏻‍♀️

[sweetschizo-deactivated20190808]

Hey if you’re schizophrenic/psychotic I just want you to know that you’re a wonderful person and that you deserve so much better than the demonization, marginalization and stigmatization you face in this society.

[sweetschizo-deactivated20190808]

Please consider reblogging this/other positivity posts for schizophrenic/psychotic people every once in a while. If you have more than 100 followers, odds are that a couple of them experiences psychosis and that they rarely see positivity posts for people with their symptoms.

[lancerevolution-deactivated2022]

PLEASE DON’T SCROLL PAST THIS

i’ve made posts needing help in the past but they’ve all ended up losing traction quickly, and right now i need a ton of help before i end up evicted come january.

currently i owe $949.09 with december’s rent and two months of late fees, and i’ll need help with next month too, which would total to $1,719.09.. i’ve been hired for a full-time position but i won’t be able to make next month’s rent on before that first paycheck. i know this is a lot to ask for, especially around holidays amd with covid but i’m in desperate need of help.

$0/$1,800

p*ypal

c*shapp: salamandias

[lancerevolution-deactivated2022]

$15/$1,800

thank you so much ahh

[lancerevolution-deactivated2022]

$96.14/$1,800

[lancerevolution-deactivated2022]

$319.14/$1,800

to the two kind people that donated $100 i owe you my entire life, thank you so so much everyone

[lancerevolution-deactivated2022]

$424.94/$1,800

[lancerevolution-deactivated2022]

$579.94/$1,800

so i made a little mistake that i cant edit now, but the c*shapp handle above was an old one of mine, my c*shapp is @/GelatinGecko !!

[lancerevolution-deactivated2022]

im sorry this is starting to lose traction and i really need help, even a dollar means the world

[hxhomo]

hm so psa bc i didn’t know this, it’s not common knowledge, and flu season is around:

apparently you aren’t supposed to take dextromethorphan (a common cough suppressant. it’s in stuff like cough syrup, mucinex dm, tylenol severe cold) with sertraline (aka zoloft, the antidepressant) bc it has the risk of causing Serotonin Syndrome, which is not as fun as the name suggests. i’m not a doctor but like, avoid drug interactions bc they can be serious.

remember to read labels guys aaa

[ursulaklegun-deactivated2024122]

Not just sertraline, any SSRI or SNRI. Serotonin syndrome can kill you. When I was younger and on a lot of medication, a dose of cough medicine landed me in the ER. Always check potential interactions here before taking anything with antidepressants, even if it’s over-the-counter.