#spoonie
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?
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??
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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From your doctor to your nutritionist, friends to family, you have a squad that will always have your back.
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when i’m feeling sick the hospital is actually a nice place to be. i don’t have to worry about any of my meds and i get to just nap and watch tv and do online puzzles and just let my body get better. sometimes it’s overwhelming and sometimes i feel lonely but as i get older i understand that sometimes it’s the best place for me to be.
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 be tougher. Stay strong, CFers. Stay strong.
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Most people don’t realize the struggle, but that’s OK. Sometimes all they need to hear is that your stomach is acting up and they’ll understand without prying any deeper.
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No offense to anyone, but sometimes you just don’t want to go out. We get it. If these excuses don’t work, here’s a foolproof fallback solution: “I have a club meeting and the first rule says I can’t talk about it.”
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