I don’t know where else to ask this, but it was recommended I do so. I’m looking for a friend. Specifically someone I can talk to about chronic pain, chronic illness, and part time wheelchair use. Literally anyone who won’t reply with ablest opinions is welcome tho. I just need someone who I can chat with and who can at least vaguely relate to me on these topics. #chronicpain #chronicillness #parttimewheelchairuser #friend #friendsearch #inneedofafriend #spoonie #spoonielife #eds #elhersdanlossyndrome
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Some days my #invisibleillness is, in fact, visible - at least to me! I chopped half an onion, smooshed six garlic cloves, stirred, sautéed, and scrubbed a ButtLoad of dishes today, along with tidying up, sweeping, etc... And this is the price I pay: swollen hands. But #itwasworthit! While driving my son on our date I noticed my hands were throbbing - not just a little achy but pulsating pain - and even touching the steering wheel hurt my palms. I looked down and noticed my ring finger turning purple. 😳 I took my wedding ring off in June for swelling, put it back on 3 days ago - and apparently our time together has come to an end again 😆🤣 So I moved it over to my pinky tonight where it still was too tight. Ugh #inflammation 🙄 Today I cleaned. I cooked. I shopped. I mom’d. Looking at me, today, you’d think I was like anyone else: healthy. But I live the #spoonielife, where who knows what tomorrow will bring! I may be blessed enough to get up out of bed and hit the road running 🤞 but it is far more likely that because I was productive today, #illpayforthistomorrow ... but #cantstopwontstop! 🙌 #inv#invisibleillnessawareness #invisibleillnessawareness #rheumatoidarthritis #ankylosingspondylitis #ra #as #autoimmunedisease #curearthritis 🙌 #tommycopper
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This week is invisible disabilities week! I share this photo to show that this is what an invisible illness looks like. People always think that even if someone has an invisible illness, you’ll still be able to tell if they’re sick. But invisible really means invisible. You don’t have to look weak or feeble or anything else to be sick. You can look perfectly healthy, happy, and vibrant and still be sick. There are a lot of people that tell me they can always tell when I’m having a good day versus a bad day, but most of them are wrong. What they’re really noticing is if I’m wearing makeup or not. I can’t tell you how many people have told me that I’m looking so great or “better” when I feel like I’m dying inside. This photo is what EDS and dislocating joints looks like. This is what POTS, chest pain, blood pooling, and an uncontrolled heart rate looks like. This is what chronic pain looks like. So think twice before you make assumptions on someone else’s capabilities or if their illness is real or not. Believe me, the outside doesn’t reflect the inside #invisibledisabilitiesweek @ehlers.danlos #invisibleillness #maketheinvisiblevisible #EDS #POTS #dysautonomia #chronicillness #chronicpain #painwarrior #chronicmigraine #GIproblems #raynauds #undiagnosed #spoonie #spoonielife
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The following is from a textbook called Nursing: A Concept-Based Approach to Learning. As I read this I felt more and more disgusted. How this was even published in the first places baffles me and makes me super angry. Pain doesn’t care about your race, gender or religion - pain is pain and to stereotype anything let alone pain because of your culture is discrimination. I thought nurses and doctors were taught to listen to what your patient needs not take a shot in the dark based on cultural stereotypes. If a patient tells you they are in pain, don’t you think they know their own body? It literally has nothing to do with race or religion! Yes some religions ban the use of some medications but don’t you think the patient would either tell you or not come to the hospital for medical attention? Also to use the term “blacks”? That is absolutely disgusting as is categorising the entire continent of Asia as all the same. Honestly there is so much that is wrong with this that I could write about ten pages. The author of this text book and the publisher Pearson Education Publishing should be ashamed of themselves. They should be forced to remove this from print and issue an apology. . . . . #crps#fibromyalgia#crpsawareness#crpswarrior#crpsfighter#complexregionalpainsyndrome#fibro#fibromyalgiaawarenes#fibromyalgiawarrior#depression#anxiety#socialanxiety#gad#generalisedanxietydisoder#generalizedanxietydisorder#mentalhealth#disability#invisibleillness#chronicallyill#sick#invisibleillness#spoonie#spoonies#spoonielife#rsd#selflove#disabled#disabilityawareness#feelingdown#mood#mooddisorder
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Living with chronic illness is like live with you worse enemy.. Familial Dysautonomia... Smile..no cure #familiadysautonomia #chronicillness #instaspoonies #spoonielife #ashkenazijewish #smile #everydayisabattle #gammaglobulinemia #scoliosisaffectsmeitdoesntdefineme
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I'm not trying to sound egotistical or enlightened or snobbish here. I've just decided that I'm only living for beauty now. Not limits or lines or boxes. I'm sick but I'm whole. I'm broken but I'm free. The strange rules of the world just aren't important to me anymore. And I'm fine with that. #spoonielife #piratelife
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Choosing daily to do the toughest thing I can. Sometimes that thing is giving up training for some yoga and letting someone else braid my hair. Resting. Saying “I can’t today.” Asking for help. They are humbling things, but they don’t have to be humiliating unless I decide they are. . . . #eightanglepose #mohawkbraids #yog#yogahemat #yoga #yogaeverydamnday #spoonielife
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ICYMI: I did a thing with my hair. Total moon goddess with the silver hair 🌜✨
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10/16 GOOD NEWS AND BAD NEWS So guess who now has a job at Sephora..... I am beyond exited to be starting there. I want to be able to dive deeper and deeper into this crazy makeup hobby and now I am! I just hope they keep me on past seasonal help, because honestly this is my dream job. I love the ability to help people feel better about themselves, and at Sephora, I get to do just that. . . So for the bad news, today at around three the pain came on fast and hard. I tried my painkillers and my anti anxiety. Nothing has helped. Eventually I took my anti nausea (I get sick when the pain gets bad) and the Norco. I have this thing called an icekap (pictured) specially made for people with chiari or other pain issues. Really it's just an ice pack. Stick it in the freezer and put it on my head like a helmet when I need it. So I'm wearing it right now and watching tv. I think the excitement of working this new job is overpowering the sadness of being in pain. . . . I might just get in bed soon. The meds make me sleepy. . . . . . . . . . #spoonie #spoonielife #chronicpain #chronicillness #chronicfatigue #chiari #chiarimalformation #hydrocephalus #headache #headaches #mig#migraines #migraine
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