Jump to content
cocoaloco

Spoonie Solidarity

Recommended Posts

So since this doesn't appear to be a topic already - a shame, really - I figured I'd make it. This is a thread for spoonies, that is, people with chronic illnesses who subscribe to the spoon theory of energy. Spoon theory does apply to both mental and physical health issues, so if you're sitting there going "but does my particular chronic issue count?" the answer is probably yes.

 

Discussion of crappy or good symptoms, treatment, coping methods that you've found, and life in general with chronic illnesses.

 

----

 

So as to start things off I guess, I'm Cocoa, and I've got a lovely mix of... Autism, adhd, odd, did, chronic depression, chronic insomnia, and an as of yet unidentified chronic joint pain condition. The past week I had errands four days straight, and I am now almost completely out of spoons. I'm pretty sure that right now I'm actually siphoning tomorrow's spoons for dragon cave which is perhaps not the wisest decision in the world. I have slept thirty hours in the past two days (thank you meds that let me sleep) and my brain is still out of it.

 

How are you guys?

Share this post


Link to post

I can understand when people use that term, but I personally always thought of it more like an HP bar. I go around and whack tufts of grass. Some days I get an extra heart and some days I don't. Sometimes I take more damage from a slime. So I suppose I don't really have a say in the subject because my chronic illness isn't severe or debilitating enough to qualify being a spoonie of sorts, because you don't 'get spoons back'. I wouldn't use that term to describe myself either, I suppose.

 

If I was, I would probably be considered a high-spoon person compared to anyone with more chronic illnesses, at least for the majority of the time. But while some days may end on a really high note, the consequent morning could find me in a state where I immediately decide that I am skipping work in the first 30 seconds of my alarm ringing, sleeping for the next 10 hours, waking up for 2 hours to wash, eat dinner and sleep again.

Share this post


Link to post

I've lived the "spoon theory" for years. Despite that, in 2004 I began training my first mobility Service Dog. It took many spoons per day, spoons I didn't have. 2 years later when she was fully trained getting her ready for work, to leave the house on errands, took spoons leaving me with nearly none by the time I got back home. But with her help I was able to somewhat resume my life albeit very limited and continue to live independently.

 

Now nearly 13 years later I am once again faced with training a new Service Dog as my first one just passed away from cancer. The task feels daunting. It is a task I will have to rise up to meet despite how I am physically feeling and once again I will be using spoons I do not have. Like before I will just forge on ahead because I have to.

 

Edit: spelling

Edited by Pinch of StarDust

Share this post


Link to post

I've never really thought of it as a "theory" of having to explain it like that, but it's an interesting way to put it.

 

I myself have bouts of chronic insomnia, where I can go days without sleep, to the point I have what I call "sleep deprived hysteria" where I'm so wide awake I'm almost hyper or hysterical...I can be really hyper but have a super short temper or something, and then back to having no energy whatsoever. (anyone else ever have that?)

I also have Dissociative Identity disorder/Multiple Personality disorder which gets really bad. As well as possible Schizzoaffective Disorder (I don't have an "official diagnosis" yet, but it's probable) I've also suffered with drug abuse in the past.

 

Along with this, I have an issue with my lungs I can never ever remember the name of, it's annoying, because I can be fine for a while, I'll go hang out and go skateboard with my friends, sing and play music with my band, and dance like a lunatic and act ridiculous with my fiance.

 

but sometimes, my lungs sort of give up, to the point I can barely breathe, and have to be on an oxygen mask, and it leaves me with no motivitian or energy, so that I can't get things done, or can't really go out, and it sucks... so on times like that, I definitely dont have enough "spoons"

Edited by Trickseh

Share this post


Link to post

i've been thinking today that it feels like an unfortunately low spoon day for me... i slept in until nearly 6 pm but i already feel exhausted and i've only been awake for an hour or two.

 

i also have DID (and subsequent PTSD), a couple personality disorders, OCD and some BFRBs like trichotillomania and others, anxiety issues, major depression, and some of the other alters have extremely bad issues with insomnia. as for physical problems, i have a chronic gastrointestinal issue that can disable me and keep me confined to the bathroom for long periods of time when it decides to flare up and it leaves me extremely weak afterward. it doesn't seem to always be linked to what i eat because i can eat the same thing on two different days and have a flare up one time but not the other. i have some peppermint oil tablets that have a slow release so it soothes my intestines but it doesn't stop flare ups all the time. sad.gif

 

today is gonna be rough because i only have until midnight to complete an assignment for school and i'm just so exhausted and i don't WANT to do it ;-;

Share this post


Link to post

Oh yes. The Spoon Theory. I know it well.

 

I have depressive bipolar disorder and really bad anxiety, and it often takes most of my spoons just to deal with that. I have a very understanding boss who hasn't fired me yet despite my need to call in sick when I just don't have the spoons to even get ready for work, much less *be* at work. I never knew how many spoons taking a dog for a walk could use up until I got a rather spunky dog. My dog sometimes helps me to the point where new spoons appear after I cuddle with him for awhile.

 

This past two months my spoons have actually been increasing, I'm happy to say. I got some really good advice about my illnesses and I'm living life in a happier state because of it, and I haven't run out of spoons during the day for a few weeks now.

Share this post


Link to post

I'm a spoonie. It's... rough, every day.

 

*waves to everyone*

 

cocoaloco, thank you so much for making this topic. smile.gif

 

One thing I recommend is mindfulness and/or meditation. I'm still in the early stages of it myself and need a lot of practice but I have found it to help with some emotional and some physical stuff. There's some meditations I like on youtube, but in general for searching by keyword/length/language, and bookmarking, I like this app. https://insighttimer.com/ (for ios and android)

 

It has thousands of meditations, all free, and (at least on android) no ads. (I sound like a spokesperson!)

 

It has meditations that are under five minutes that it's like, if you don't think you can begin to meditate (which isn't a clear your mind of all thoughts type of thing, but is still hard) listening to something for two or five minutes can be a good first step. At least it has been for me. The meditations are also rated, which I think could be a good help for some. I don't usually pay attention to the ratings myself but sometimes I read the comments. Usually I try to filter out by summary or title if something isn't going to match up with my spiritual beliefs, and then just play the recording for a test run to see if I like the person's voice. I also don't like when meditations say you have to sit a certain way or breathe to a certain specific count, because most times I can't, so I appreciate the ones that don't do that.

 

I think I've rambled enough?

Edited by diaveborn

Share this post


Link to post

I'm also a spoonie. I've got fibromyalgia, major depressive disorder, chronic anxiety, and lymphedema (don't google it, trust me, you don't want to see the pictures). I keep a symptom journal in my day planner and get so excited about high-spoons days I doodle little hearts and stars on them.

Share this post


Link to post

I never thought of this in terms of spoon rationing before, but reading the story, the metaphor clicked for me instantly. That's my life, too. I'm constantly faced with the feeling that my priority list is simply impossible - that no matter what, SOMETHING is going to be neglected or left undone. My only choice each day is what that is. To be honest, most days I choose to neglect myself physically because I'm so desperate for some kind of emotional lightening that it's very difficult not to choose to do stuff like, say, Dragon Cave, instead of cooking food or cleaning or taking a shower. But then I feel awful because my home is a junkyard and I'm disgusting. So then I switch off and start working hard to clean up, become presentable, et cetera...but then my life is nothing but a joyless series of alternating work, pain, and sleep. And I can't endure that for long before I start thinking about suicide. And I know where that goes and I can't allow any more attempts, so I end up cycling back to desperately trying to lift my mood...which means other stuff gets left undone... et cetera.

 

God I miss having a caregiver.

 

EDIT: I guess I should mention, my problems are multifarious, but what's really killing me is pure chronic pain. I've learned some strategies and tactics for dealing with my depression, ADD, and other psychiatric/neurological problems by my age (32). They definitely cost me, but what's really forcing me to count spoons is the pain, and the physical exhaustion it causes. My lumbar spine is all messed up and it's messed up the rest of my back in reaction as muscles twist and cramp in weird ways to try to compensate. I have a numb patch on my right shoulderblade from the muscles squeezing the nerves to death. I feel overwhelmed by it all. If it were only a few things - just the ADD, just the depression/anxiety, just the OCD, just the pain - I could handle it. But all at once I feel like I'm drowning.

Edited by Lurhstaap

Share this post


Link to post

@Lurhstaap:

 

Dang, yeah, I know what you mean about it being hard to handle multiple things. I'm really sorry you feel so overwhelmed.

 

You don't deserve to feel joyless. You deserve what gives you joy and you deserve to not feel awful because you're choosing to prioritize that.

 

I've had to let stuff go, let the house be filthy and take some shortcuts* with food like pre-prepared meals and shortcuts with personal hygine. There are multiple reasons why these shortcuts aren't ideal but I try to remind myself that it's okay to not meet certain standards when meeting them impacts my health more negatively than I can deal with.

 

*If you're interested at all, just shoot me a PM and I can give some more specifics.

Edited by diaveborn

Share this post


Link to post

@Lurhstaap I know that feel - I feel like I'm drowning most days of the week. Calling for a doctor's appointment wipes me out for the rest of the day. So does sweeping up or folding even a little laundry. I feel so embarrassed and ashamed most of the time - I'm 33, I'm college-educated, I've had a bunch of Serious Business™ jobs, I ought to be able to do dishes and take out the trash! But most days, I'm just so tired and hurt so much it's impossible. sad.gif

Share this post


Link to post


  • Recently Browsing   0 members

    • No registered users viewing this page.