#paindrained

[raseforcrps]

After a few hours of fun, I am #paindrained....#rsd #crpsawareness #crps #chronicillness #painwarrior #eds #gastroparesis #dysautonomia #pots #chiari #chronicpain #rarediseases #signlanguage #deaf #hoh #hardofhearing #deaftalent #deafpride #hearingaids #wegohealth #asl #americansignlanguage #justforfun #deafcan #deafculture #deafawareness #tiktokcreator at asl_suzyq & #youtuber at ASLSuzyQ https://www.instagram.com/p/CFs-j_QDPL5/?igshid=qeha9uyes6vk

[tiambengo]

#lunchboxdrawrings #365in2022hopefully #stuckchuck #paindrain #kidcosmic #netflix #amightyfineshow #lunchboxdrawrings The Squid and I finished Kid Cosmic season 3 this weekend. It was great. You should watch it. https://www.instagram.com/p/CZ9yglClndS/?utm_medium=tumblr

[spoonielivingapp]

💜🥄✨🥄💜Repost @fitfibrochronicals ・・・ chronic pain view of the day, courtesy of a massive sciatica flare 😒 that in combination with on/off kidney pain is exactly how I wanted to kick off my midwinter break 🙃 #fitfibrochronicals #fitsisters #fibrosisters #spooniesisters #spoonieliving #spoonielivingapp #sciatica #paindrained #warning #lowonspoons #spoonie #pjday #poorlyday #kidneypain #backpain #viewoftheday #chronicpain #chronicillness #chronicfatigue #invisibleillness #butyoudontlooksick #flare #sendspoons #teacherlife

[batteredbutterfly]

Today was busy! I did laundry, finished the book I was 📖 reading,went to groups and met with my case manager. When I got home I did some cleaning in my kitchen ( cabinets and dishes) and sorted some books and paperwork. I ate some rice and a shake. I also rested a lot. I am very stiff and sore after working five ( or was it six) days in a row. #nighttimeselfie #selfcare #wellnessjourney #chronicpain #chronicillness#zebrastrong #fightlikeazebra #aspiezebra #paindrained #autistic #EDS #recoveryjourney #imworthit #recoveringbulimic #recoveringselfharmer #seizures #sobrietyisworthit

[paindrain]

#11: Support Rolls In I’ve always wanted to write about my pain, but most of me was afraid of being judged, of being laughed at, and of being misunderstood. It wasn’t until 8 years after the onset that I finally grew the courage to open up. I finally realized that if I could help even one person with similar struggles, it was worth the snickers and the judgements. My friends proved me wrong. I’ve only received support since my first blog post. Support from lifelong friends and new ones! My friends also proved to me that they are the best friends in the world. Thank you all so very much. I am truly blessed.

[batteredbutterfly]

Today I worked with the kittens 🐈 and rested. I didn't have the ability to focus on anything. Even my hair hurts today. I know I have been overdoing things. But I did eat my rice and applesauce. #nighttimeselfie #paindrained #fightlikeazebra#imworthit #wellnessjourney #aspiezebra #invisibleillness

[batteredbutterfly]

Part two: But You Don't Look Sick. No, I usually don't. In over thirty years I have gotten good at hiding it. When I am not in a flare, I can walk without mobility aids, stifle my pain, work, and on REALLY good days , do a fun activity like go out to a movie or a cafe. But I am still Sick. Ehlers-Danlos Syndrome never goes away. Ever. It's a fault in my connective tissue. That affects my whole body. Even the photo here hides my illness very well. What you can see is a young woman, dressed and wearing makeup with her dog and running shoes in the background. What you don't see is that I had at least four subluxations and multiple dislocations in the process of getting up and dressed. That I had already had two seizures. That today my pain level is at a nine (ready to chew off my wrist). That I have thrown up multiple times and I am currently being overwhelmed by light, sound, textures, and even the air from the A/C. That I am so dizzy that I am going back to bed. That my apartment hasn't gotten cleaned for two days and is starting to smell like spilled kibble. So there can be confusion when I suddenly have to cancel a commitment or call in to work. To people on the outside, no I don't look sick. #chronicfatigue #chronicillnesswarrior #chronicpain #wellnessjourney #seizures #selfcare #paindrained #stillsmiling #eds #exhausted #vertigo #epilepsy #aspiezebra #autistic

[batteredbutterfly]

I just have to be honest for a moment. Most people know I have "something" going on but I can't hold back. I am going to be honest and open and in the process may come off as negative and whining. And maybe I am being for a moment. I want to say first off that I am not asking for anything. Not pity or attention. I just need to "info dump." And it is difficult to be positive constantly. People who have been following me for a while and pay attention to hashtags have some Idea, but most people barely know me at all. To start, most people do know I am autistic. They do not know how that can be an enormous challenge in my life. Things that seem second nature can completely confuse me. And it comes with all sorts of "fun" co occuring issues. PTSD, anxiety, seizures, extreme sensitivity to just about everything. And then Ehlers-Danlos Syndrome ( hypermobility with classic crossover) which means constant fatigue, daily pain at level eight on a good day, constant dizziness, nausea and passing out, dislocations daily, difficulty swallowing, GI issues, the inability to hold up my head, and the frustration of not knowing what is going to work at any given minute. Add in substance issues, borderline personality and my tendency to turn everything inward and self harming. It makes basic living very difficult. There are days I can't even manage to get up. But I still try to stay positive. At least most of the time. And I still have a lot to say. So more later. #selfcare #anxiety #autistic #aspiezebra #findingmyvoice #mentalhealth #imworthit #independence #invisibleillness #nighttimeselfie #paindrained #fightlikeazebra #recoveringbulimic #recoveryjourney #recoveryisworthit #recoveringselfharmer #chonicpain #chronicillnesswarrior #wellnessjourney (at San Francisco, California)

[batteredbutterfly]

Pecan and I had a rough day. I am still dealing with seizures and vertigo. I am having a lot of tummy pain too. I worked with the in house case manager to get Pecan out. She freaked and peed right by the managers office. Pecan, not my case manager. I just cleaned up as best I could and apologized. I did NOT go into pure panic mode. Then she stole a pack of craft singles and ate the entire thing including the plastic wrappers during the three minutes I was in the bathroom. 😔 sigh #nighttimeselfie #pecan #findingmyvoice #shewillprobablyfeelawful #independence #selfcare #wellnessjourney #seizures #mentalhealth #aspiezebra #paindrained #fightlikeazebra #pitbull #recoveryjourney #recoveringbulimic #imworthit #rosenose

[batteredbutterfly]

Today was exhausting. I had a vertigo test, which triggered seizures. Then therapy. Then a short walk. (Which also triggered seizures) Pecan helped me out a lot. So happy to have my Pup. #selfcare #wellnessjourney #seizures #EDS #fightlikeazebra#mentalhealth #adoptdontshop #findingmyvoice #actuallyautistic #paindrained #nighttimeselfie

[batteredbutterfly]

Today I rested and tried to recover. Not much of anything else. Ten minute check in with case manager . #nighttimeselfie #mentalhealth #selfcare #EDS #paindrained #sanfrancisco #wellnessjourney #recoveringbulimic #recoveringselfharmer

[batteredbutterfly]

Today I did my shift. I ran some errands and rested. Honestly, I mostly just rested. So worn out! Preparing for medical stuff. #EDS #independence #findingmyvoice #fightlikeazebra #invisibleillness #autistic #anxiety #aspiezebra #paindrained #exhausted #stayingpositive #wellnessjourney #selfcare #nighttimeselfie

[batteredbutterfly]

Today I went to therapy, met with case manager, and took a class in Kennel card writing. I loved the class. It will really help with work. And added bonus...I got kitten 🐱 time. I hurt so bad I just grabbed some 🍉 fruit for dinner. And napped. #nighttimeselfie #selfcare #aspiezebra #eds #paindrained #napsaregood #findingmyvoice #independence #Actuallyautistic #wellnessjourney #recoveryjourney #imworthit #fightlikeazebra #recoveringbulimic #recoveringselfharmer

[batteredbutterfly]

On days I feel the worst, I try to look my best. No I am not going to a party, I'm just going to see my therapist. But the pj uniform I've been living in wasn't quite the look I am going for. Still, I admit it. I'm beat. If I didn't have a class right after I wouldn't have even attempted to get up, honestly. #getteadychallenge #strugglingtobreathe #EDS #paindrained #stillsmiling #selfcare #Imworthit #motivatedonmonday#aspiezebra #fightlikeazebra

[batteredbutterfly]

I managed to get up and face the morning, despite being dizzy 😵 and nauseous. #morningselfie #selfcare #imworthit #Nativebeauty #paindrained #exhausted #isitjuneyet

[batteredbutterfly]

#getreadychallenge #morningselfie #selfcare #livingsober #sobrietyiseorthit #recoveryisworthit #imworthit #pinkpjs #cutepjs #paindrained #heatpadismybestfriend #stillsmiling #EDS #Recoveringbulimic #recoveringselfharmer #recoveryjourney #wellnessjourney