spoonie problems

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I hate hate hate unsolicited advice

I’m done with the “good intentions” trope.

I don’t care if people mean well. I have said it enough that it should be respected.

I will be using the term “you” because I’m constantly defending myself from a “you” who keeps interjecting their feedback on my life.

Do not tell me how to live my life as a disabled, homeless, chronically ill American. Your unsolicited advice is harmful and distracting. It triggers me and makes my voice more silent. I have been fending off comments like this for years despite telling people to be respectful of my experience that they could never imagine, of a situation they know only a portion about, and about symptoms I am masking for their comfort- to which they don’t have any idea about.

Giving me advice on what to do for a barrier I am facing is like telling me to fix my broken car with a screw. A screw may not help anything. And it definitely isn’t what I need. And I probably have already tried it.

By the way- I am not the broken car in this analogy. I am still the driver. Respect my autonomy please and thank you.

I have been surviving complex trauma for years. Decades.

Just stop.

End vent (until I get triggered again)

#CPTSD #ComplexPosttraumaticStressDisorder #Anxiety #Agoraphobia #PanicAttacks #GeneralizedAnxietyDisorder #ADHD #DomesticAbuseSurvivors #Migraine #ChronicMigraines #ChronicIllness #Spoonie #SpoonieProblems

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Experience with pain during ketamine treatment..

I had a ketamine treatment today (30mg in 1 hour) and it was good but I had quite unpleasant pains and tensions during the treatment. This wasn't the first time I experience this but it was never as bad as today. Have others also had such experiences during ketamine treatment???

Getting such a strong medicine and still being in pain sometimes scares me a little.. and I felt kind of overwhelmed by this feeling today..

Maybe I should mention: I had now a almost a 3 months break from the treatment. Actually a involuntarily break... they have forgotten to send me my new appointments and I was too depressed to stand up for myself.
When I was finally able to act again, I at least immediately got an appointment for the following week. So since last week I am back in the hospital with weekly ketamine sessions.

#heds #ehlersdanlossociety #KetamineTreatment #SpoonieProblems #MentalHealth #Depression

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We want people to feel less alone.

My friend and I host a Podcast called Creative Copes. It’s a labor of love- for ourselves, our own journeys and the compassion for others. We hope it becomes an aid for people in similar situation as us. We also have this idealistic approach of trying to end stigma and raise awareness about these conditions life has thrown at us by openly talking about them.
We set out to share our personal stories and how we creatively cope; with humor and with sprinkles of scientific studies that we have looked up.

We want YOU to feel less alone.
Honestly, we all want to feel less alone on this windy road that’s is chronic illness.

You can find us on Instagram @ creative.copes and on any listening platform just search up the name. Listen in, subscribe and message us. We would love some conversations with like-minded people.
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#Podcast #ChronicIllness #ChronicPain #Pain #Fibromyalgia #MyalgicEncephalomyelitis #Agoraphobia #Anxiety #SocialAnxiety #CopingTips #Endometriosis #MentalHealth #spinalinjury #OccipitalNeuralgia #Dysautonomia #ChronicVestibularMigraine #Migraine #Community #Disability #youarenotalone #Spoonie #SpoonieProblems #spoonielife #CheerMeOn

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🩻 I’m back! 🩻

Sorry, I’ve been a bit absent recently! I hope you didn’t think I’d forgotten about you all? You’ll be glad to hear that my chiropractor fixed me so now I’m back (pun intended 🩻🤗🤣)!! My body may be held together by Kinesiology Tape but it helps when you can have some fun with it! 🤷🏻‍♀️😂 I’d be lost, in agony, and falling apart, without my amazing chiropractor!!
👏🏻😍😘💝
#functionneurologicaldisorder #FND #fndwarrior #fndaware #fndhope #fndhopeuk #fndaction #FNDAwareness #JointHypermobilitySyndrome #Hypermobility #HypermobilitySyndrome #HypermobilityWarrior #JointPainWarrior #Jointpain #JointPainRelief #JointHypermobilityAwareness #ChronicFatigue #EhlersDanlosSyndrome
#ChronicPain #Chronicpainwarrior #ChronicPainRelief #ChronicHeadaches #ChronicMigraines #chronic #ChronicIllness #Painrelief #chiropractic #chiropracticadjustment #dryneedling #dryneedlingtherapy #Acupuncture #kinesiologytape #kinesiology #kinesiologytaping #ktaping #ktaped #SpoonTheory #Spoonie #SpoonieProblems

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This may sound crazy, but I think I can “use” more #spoons

So, I am looking for some advice. I think I am able to add more spoons because I believe I can do more. I have been using the standard 12 spoons. But I have more energy to give. While it has been well with the 12 spoons, I know I can “do” more. I require a structure like this. I just need an adjustment. How would I go about assigning spoons to a task? I know this sounds weird but w am looking for suggestions. Thank you!
#SpoonieProblems

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Rest Can Be Triggering

If you have spent a lot of time in hospitals or institutions or forced to lie in bed, rest can be very triggering. When you spend long periods of your life forced not to do anything, rest can feel like a punishment. Medical and psychiatric trauma are real.

At this time of year, we can get a lot of messaging about rest and productivity that lack nuance. So this post is a shoutout to all of our sick, crip, mad, and disabled community out there who struggle with finding Crip space for rest. You are valid too.

ID: Rest can be triggering. Background photo of mountains against the sky on a full moon night.

#Disabled #bedbound #Bedrest #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #Spoonie #SpoonieProblems #SpoonTheory #Holidays #PostexertionalMalaise

8 reactions 2 comments