spoonie problems

Join the Conversation on
spoonie problems
2.5K people
0 stories
160 posts
Explore Our Newsletters
What's New in spoonie problems

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

123 reactions 38 comments

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

8 reactions 7 comments
See full photo

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.
#Podcast #ChronicIllness #ChronicPain #Pain #Fibromyalgia #MyalgicEncephalomyelitis #Agoraphobia #Anxiety #SocialAnxiety #CopingTips #Endometriosis #MentalHealth #spinalinjury #OccipitalNeuralgia #Dysautonomia #ChronicVestibularMigraine #Migraine #Community #Disability #youarenotalone #Spoonie #SpoonieProblems #spoonielife #CheerMeOn

10 reactions
See full photo

🩻 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

11 reactions 12 comments

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!

2 reactions 1 comment
See full photo

TV Show / Movie That Best Describes Your Chronic Illness Life?

I’m going with Steel Magnolias—not because I have Type I Diabetes, but because of the journey it depicts. Cutting my hair short due to chronic illness ✔️ making hard choices because of chronic illness ✔️ going to hospital because of my chronic illness ✔️ having to consider that I might die young(ish) from my chronic illness ✔️

And there’s that scene where Sally Field rages and howls at the injustice of her daughter being taken away from her because of chronic illness which speaks for itself. I also find some hope in the sense of community that Shelby has around her. I certainly don’t have anything as great as that in my everyday life, but I have a supportive husband and have a Mighty community in you all ❤️

What’s your Chronic Illness Life TV show or movie choice? 🎥

#Movies #TV #Netflix #netflixandill #ChronicIllness #Spoonie #SpoonieProblems #TheDisabledLife #Fibromyalgia #ChronicPain #MyCondition #MyalgicEncephalomyelitis #DistractMe #MightyTogether #MightyQuestions

9 reactions 6 comments