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living with a chronic illness is really depressing sometimes. you can do everything right and still hurt. you can make all of your appointments and still be struggling. you can do nothing and feel completely exhausted and defeated. le’sigh..
doctors constantly talk about the dangers of high blood pressure but there isn’t as much awareness of how equally as dangerous low blood pressure can be.
PSA: people’s struggles aren’t supposed to be inspiring to you....a reminder of how much privilege you have or how grateful you should be. whatever you are so grateful to not be experiencing is something that so many people struggle with every day. my life isn’t supposed to be inspiring to people who have resources which would transform my life in so many real ways.
having your loved one shame you for not being able to immediately do the task/activity they requested because of your pain/physical limits is a special kind of isolation...
spoonie tips for my younger self (which still apply to my self & anyone living with chronic illness):
document E V E R Y T H I N G. some people will listen & try to help you...but the fact is so many health care professionals are dismissive and/or assert your symptoms are psychosomatic. navigating the system is difficult - especially when you call to make an appointment scheduled for 3-6 months out with a specialist to discuss symptoms you are experiencing right now. the referring doctors notes will not be enough. your body chemistry and/or flares could ebb and flow and test results may look normal by then. your condition may affect many systems of your body and be understood differently by different people. don’t let doctors be dismissive of your symptoms and/or experience. keep a journal. take live pictures with time stamps. advocate for yourself the best you can with whatever resources you have if you are able. sending my love to all of those in need. ily.
excited to be reconnecting with my old physical therapist who specializes in EDS/hypermobility. 6 more days until my bone lesion excision & then I can get my health back on track !! 😊
Have you tried positive vibes?
Every day I wake up. I lay there for a while. Not because I need to browse on my phone, or be grateful for the day. I cannot move. My body is stiff and I’m paralyzed with pain. Have you tried meditation?...they say. When I finally make it out of bed, it’s only moments before I’m racing to the toilet, to vomit up my stomach acid. Have you tried a pill?...they say. I get myself together and live out my day, no matter how many spoons, or a lack thereof, I have. I do well...I get good grades...I am successful at my job...people like me. Yet I feel so alone, misunderstood, and trapped inside my flesh prison which once did so many amazing things (and still does), yet I am stuck in a reality where my life is pain and I can no longer do many of the hobbies and activities I once loved. I am taking good care of myself and trying to preserve what mobility I do have. Have you tried positive vibes?...they say. And yet again, I am alone.
idk what’s worse...
talking myself out of canceling my 4 specialist appointments this coming week coz ik they are important & pushing through my past traumas with doctors... or ... dealing with chronic & debilitating physical pains 
