#chronic illness

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Me: I’m chronically ill which makes me disabled. I managed to adjust my life so I can live as comfortably as possible, which means I don’t work, being poor, and not doing much. Sometimes I have to sleep all day, sometimes I go on hikes with my dog, sometimes I exist, sometimes I want to kill myself. That’s my life and I’m okay with it.

Ppl: BbUuuTTt — ThAt soUndS dEpreSSinNngG!

Ppl: buTtT — I COulDn'TttT lIvE liKe thIsS!

Ppl: BbuUUTtTtT — iSn’T tHEre ANyThiNg THaT caNn bE DoNe tO chAnGe YOur depREssIng stAte?

Ppl: bUuuUtT — LivE iS abOUt LIVING, NOT EXISTING!

Ppl: buTT — hOw cAn yOu LIvee LikE tHat?

Ppl: buTttTTTTT — DoNt be So neGaTiVe, if IT wAsS mE, I WouLd bE mORe HopEFuLl, That thEre WiLL Be a CuRe, AND My dePreSsIng LIfesTyLe WoUlD eNd.

Ppl: BUttT — YOure SUCH AN INSPIRATION!!! I wOuLdvE kIlleD MYsElf By NoW!

Ppl: BbUuutTtTTtTTttTTTtttTtFFTFTGdvdbdjaoownKGgafcwvsvezzeezhdhcbjdakwjcvgcudwkmqnbsgdhchnsbevahauJJKKKiHGFFFdDEGhJanBabakaksm

Me: Well, at this point we should think about who is the really negative person in this conversation.

Ppl:

Ppl:

Ppl:

Ppl: Yeah, no, you’re negative, saying you’re disabled is negative, disability is okay in and of itself, but don’t call yourself disabled, because that’s so negative, not having goals and not accomplishing anything in life is a wasted life, contributing to society is important, you’re so poor for not seeing how you’re wasting your life, you should really try to change something, although I admire you, because I would have killed myself by now, just saying.

Hey everybuddy! Today’s offering is another awesome guest post, this time by the lovely @911nmg, who’s been kind enough to share a story about chronic dislocations and joint weakness in the foot and ankle! 

Dislocations are one of the most frequent injuries suffered by heroes in the action department, particularly in detective movies like the Lethal Weapon series. But the reality of living with loose joints and chronic dislocations is slightly less flashy than what we see on TV. 

Remember that, because this is someone else’s life experience, I necessarily cannot verify everything that’s in the post, but it’s also very much not my place to censor what other people say about their own lives. 

Thanks again to @911nmg for the gracious guest post and for being willing to share your story with us! Take it away! 

xoxo, Aunt Scripty 

[disclaimer]

Hi there!

I’ve been scrolling through the dislocation tag and found out not much has been asked about feet, so I wanted to give my story with it.

Since I was little I showed signs of having articular hypermobility, a benign alteration of the composition of muscles and tendons that allows for extra range of movements of the joints. I was thrilled with it because I wanted to be a dancer but it actually prevented me from becoming one.

At age 5 I had already had three shoulder dislocations (I wanted to cross the street without looking and my parents grabbed me so I wouldn’t get run over by a car, that was all it was needed for the joint to pop out) and a wrist one (fighting over a teddy bear) but one day in summer, running to get to beautifull purple flowers, both my right and my left foot popped out.

In the moment it wasn’t that bad, my dad put them back in place and I got two ankle bracelets, but over time it got worse, I kept on dislocating my right foot over and over, at school, in the park, on dance class, it was so common I actually learnt how to put it back on place myself.

At age ten however I was running on gym at school and I suddenly fell and I couldn’t get back up, my parents were informed and an ecography and scan later my doctor resolved I had scars on the peronean ligaments and I had to quit sports (just about a week after starting pointe shoe lessons).

Nevertheless it got worse and by age fifteen I was diagnosed with chronic pain, still I tried to live my life normally (do sports, wear high heels, go dancing all night) but at eighteen I was limping my way through life and I had to take pain killers everyday, so, I was put on intensive phisiotherapy.

We tried everything from thermo and criotherapy, passing through electric pulses, to good old fashioned masotherapy, I was given a lot of feet exercises to do, including balancing exercises with my bodyweight on a bosu balance trainer.

Today I’m 21, I have chronic pain but is manageable with ice, heat, exercises and the ocassional pain killer. All my shoes (including heels) are approved by my orthopedic doctor, I’m forbiden from doing high impact sports (so no step, or zumba, or running for me) and the occasional ones I do (skating and skiing) I strap myself with ankle braceles, ribon, and the closures of the boots so tight I have lost sensibility of my fingers more than once.

The worst thing for me is walking through irregular surfaces specialy sand, because it requires my feet to balance themselves over and over in the region of the ligament scars.

Hope this helps for all future writers out there.

Love your blog aunt scripty!

thedreamer001:

Gentle reminder to all my fellow spoonies today: if you need to eat different food than everyone else due to food allergies, sensory sensitivities, or any other reasons, do it. If you need to eat at a different time than everyone else to take medicine, prevent yourself from getting low blood sugar, or any other reason, do it. If you need to take a break or leave, do it. Remember to take care of yourself y'all.

soft-spoonie:

This is what’s been hitting me really hard lately, and someone put it into words.

[ID: A darkmode screenshot of a tweet by Laura Elliot. It reads: the fun thing you learn when you have a chronic illness is there’s really no such thing as mind over matter in the way healthy people think it. you can to an extent distract yourself from some symptoms, but once you get sick you realise you can’t actually will your body to work. /End ID]

Trying to convince my therapist of this. No “If you believe you can’t heal then you can’t.” I’m pretty sure it’s the <5% recovery rate and not my lack of grinning. I refuse to live my life waiting for a highly improbable cure and No, my Attitude will not change this. I’m going to live as if this is my new life and I have new goals and things I intend to do. Just… very slowly. Refusing to believe in a magical future Cure for myself is not negative- it’s accepting reality, and deciding to have goals and fun anyway.

Have you ever thought things like “I’m not REALLY disabled” or “I won’t let my disability/illness stop me”? If so, this video might be for you.

…and with that, I have just finished my first YouTube series! ✨

It’sa series of 4 speedpaint videos discussing internalised ableism. They can be watched in any order, this is the last and newest one.

In these videos I delve into the various ways in which disabled and chronically ill people turn ableism inwards, often without realising.

I do so with the help of Internalised Ableism Bingo, an unexpectedly useful meme that gave me some incredible insights. The final concept I want to explore is “disidentifying”: rejecting the reality of being disabled in society.

I put a lot of work into this series, and I hope that it can help other people understand the ways in which ableism impacts them. I would love it if you checked it out and let me know your thoughts.

I’m sharing a fundraiser for a fellow POTSie who has the opportunity to get a low price wheelchair and seriously improve their life the same way I did. Donate $1 or 2 here if you can manage it: she has $56/$250

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?

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.

Whether you’re moving into your first apartment, getting started in a new dorm, or living it up at y

Whether you’re moving into your first apartment, getting started in a new dorm, or living it up at your parents’ place, furnishing your living space should be all about you. Here are some things you can get to make your home more CF friendly.


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On those days when you can’t get out of bed, remember the spirit of Claire Wineland.

On those days when you can’t get out of bed, remember the spirit of Claire Wineland.


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From your doctor to your nutritionist, friends to family, you have a squad that will always have you

From your doctor to your nutritionist, friends to family, you have a squad that will always have your back.


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sarahbeara113:

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.

Finding strength in trying times can be tough. But finding the right time to fart during a date can

Finding strength in trying times can be tough. But finding the right time to fart during a date can be tougher. Stay strong, CFers. Stay strong.


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