spoonie problems

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

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

Night time is probably the worst. Anyone else up? Let’s talk! :)

#ChronicIllness #SpoonieProblems #Spoonie #Gastroparesis #EhlersDanlosSyndrome #MastCellActivationDisorder #ChronicIntestinalPseudoobstruction #PulmonaryHypertension #PulmonaryArterialHypertension #Painsomnia

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

When unpacking your bag from holiday trip leaves you with -10 spoons. #SpoonieProblems #Holiday