funnytwittertweets
Stop telling disabled people to just use "mind over matter". No, I can't tell my body to keep going if it has an energy crash and wants me to stop. No, I can't make my pain go away with positive thoughts. Stop that ableist shit. Stop acting like it's our fault.
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? 😊
Sometimes "getting better" means it hurts less to get up in the morning. Means it is a bit easier to step into the shower. Means small things make you smile again. This is okay. "Getting better" doesn't have to be giant steps. I'm so proud of you, no matter what.
So disappointing 😒
#chronic pain#chronically ill#chronic illness#spoonie#spoonie life#disability#spoonies#repost#found on pinterest#spoonie humour#invisible illness warrior#invisible illness#pain#systemic lupus erythematosus#lupus#rheumatoid arthritis#arthritis#eds#elhers danlos syndrome#fibromyalgia#fibro#chronic pain memes#funny#joint pain
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.
#chronic pain#chronically ill#chronic illness#spoonie#disability#spoonies#text post#question#invisible disability#disability question#help?#comment please#postural orthostatic tachycardia syndrome#posturaltachycardiasyndrome#systemic lupus erythematosus#lupus#rheumatoid arthritis#raynaud's syndrome#raynaud's phenomenon#diagnosis question#diagnosis#spoonie community#high heart rate#fast heart rate#doctors#im suffering#heart
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.