#spoonie diary

[seabie]

i am so exhausted it's hard to put into words - always trying new meds, none of them ever work. appointment after appointment boxes of unfinished pills nausea insomnia obtuse rubber goose green moose guava juice giant snake birthday cake large fry chocolate shake

#chronic pain #chronic illness #spoonie #spoonie diary

[smoking-witch]

05.02.2024 Currently trying not to cry into my pasta bc FetLife doesn't do gifs yet and I made this gem today 🥺😭😭 also I'm so fkn tired but I'm also so fkn tired of being so fkn tired, also life must go on bc we are all chained to the machine that is this capitalist society... What I'm trying to say is that I'm so sore but I'm going to a local bar tonight anyway to have a business meeting then cause some kind of incident by being visibly dominant & lesbian during karaoke & I'm going to hurt so bad tomorrow but dammit I NEED TO LIVE MY LIFE 🎤🎶🧡🤍🩷

#my photography #my diary #diary entry #dear diary #diary #journal entry #chronic fаtiguе ѕуndrоmе #chronically ill #chronic illness #chronic pain #chronic fatigue #cfs #me cfs #pwme #post exertional malaise #long covid #fibromyalgia #spoonie stuff #spoonie #spooky girls #spoonie strong #invisible disability #disabled artist #disabled #disability #great butt #huge butt #hot goth #fishnets #hot domme

[crashdown]

gonna start using performance reliability instead of spoon theory bc it sounds cooler

#murderbot had it right i think #murderbot #tmd #the murderbot diaries #spoonie #spoon theory

[lichensdiaries]

Who I see in the mirror is so often fractured.

They have been broken, shattered. And remade. Not what they once were and not who they will be. Just a fragile reflection that glints in the mirror.

#mental health #disabled #spoonie #invisible disability #chronic fatigue #diary #chronic illness #chronically ill #sort of poetry

[crazycatsiren]

I think the hardest yet perhaps the most important thing I've learned to live with this year, is that things can wait

Absolutely nothing bad will happen if I postpone cleaning my house from this week to next week. The world will go on turning if I wait till the next time my husband mows the lawn to weed whack.

I know I have brand new card decks sitting on the shelf that haven't even been shuffled. I know the offerings on my altars haven't been changed in at least 3 months. But the gods know, my dear grandfather, one of the most important people in my life, passed away in March, and my mental and physical health have both taken a dive from grief. Now almost 6 months later, I'm worn out, burnt out, utterly exhausted and deflated from grieving.

But there are things that will wait for me, that will always be here for me. My craft and my spirituality aren't going anywhere. There are things that can always wait. And there are things that I can go back to and pick up again whenever I'm ready, whenever I'm up for them again. And I still have time.

#diary #lorelei's mind #witchblr #witch #pagan #homemaker #spoonie #disabled #neurodivergent

[crybaby-writings]

i wish able-bodied people would stop using disabled people for their 'inspiration'/clout/sympathy porn 🙄

#just fucking stop #it got old a long long time ago #◇— ash's diary #disabled #spoonie

[neuroborreliosis]

www(.)ineedatherapist(.)com/

written in a bad bout of brain fog - 7/20/23:

i sit here like a screensaver staring out, taking nothing in i sit stupefied by very mundane surroundings while time wastes itself on trivialities my brain booms with echoes of thoughts that evaporate before they hit me my ears are tornadoes where white noise and tinnitus ring around and clang against my consciousness like vehicles and furniture and other things lost to encephalitic winds

saran-wrapped brain suffocates me in my wakeful state just enough to make me go a little bit dim, not enough to call a doctor in i feel like if i don't scream and keep screaming i'll die forgotten like this, cold-war collateral strung along by b. burgdorferi, silent slo-mo fadeout from the sickness that screens me in.

#lyme disease #brain fog #poem #poetry #tinnitus #chronic lyme #lymie #spoonie #chronic illness #chronic fatigue #chronic pain #free write #diary #lyme diaries #cld #journal entry

[bloodborscht]

#diary #spoonie #chronic illness #disability #cripple punk

[spooniechef]

The Dinner Diaries 2a, Midnight Snack Attack (Wacky Cake - 0 spoons)

I'm off work this week and for some dumb reason, I got it into my head to do that Wacky Cake recipe I've been on about lately. I got this urge at something like 1:30am. Because disordered sleep is right up there with disordered eating, I guess. In any case, it's a fairly easy recipe, as found in B Dylan Hollis' Baking Yesteryear (and probably dozens of other places) ... though there are a few notes I really want to make when it comes to this particular recipe. Especially when using gluten-free flour. Anyway - Midnight Baking!

Here's what you'll need:

For the cake:

1.5 cups all-purpose flour

1/3 cup cocoa powder

1/2 teaspoon salt

1 teaspoon baking soda

1/3 cup vegetable oil

1 teaspoon vanilla extract

1 tablespoon white vinegar

1 cup water

For the frosting:

1 cup powdered sugar

2 tablespoons cocoa powder

About 3 tablespoons water

I'll add it here rather than including the instructions - for the love of whatever you like, sift the flour and powdered sugar before you use it. The flour is particularly important if you're using gluten-free but is probably necessary for ; the sugar's important just in general. Flour and powdered sugar both tend to clump, and things won't mix properly without a lot of effort if you don't sift them first.

So, with some variations depending on what material your cake pan is made of, here's what you do:

Pre-heat oven to 350F (180C, 160C fan assist, gas mark 4)

You want an 8" x 8" cake pan; if your cake pan is ceramic or glass, add the dry ingredients directly to the pan and mix until uniform. If your cake pan is metal, mix everything in a large bowl.

If not using metal, dig three wells in your dry ingredients. Add the vanilla to one, the oil to another, and the vinegar to a third. Then add the water and mix well. If you are using metal, just throw all the wet ingredients into the bowl of dry ingredients, mix well, and dump the whole thing into the cake pan.

Bake for 25-30 minutes, or until a toothpick inserted into the centre comes out clean. Cool entirely in the pan.

Mix your cocoa powder and powdered sugar and stir while adding very small amounts of water until it reaches a thick pourable consistency (not quite as thick as molasses, but close). Pour over the cooled cake; cut cake into squares in the pan.

Final note - if you're using the Celcius temperature, err on the side of 30 minutes plus, just to be on the safe side.

Of course, now I've gone to all this work and I'm not actually all that hungry any more. Though it doesn't help that I did not sift the flour or powdered sugar before I used it. Not that it doesn't still taste nice; just I don't think I got the consistency of the frosting right, at least in part because a fair bit of the powdered sugar clumped rather than dissolving. I'm sure using the tips above will help next time.

So will not trying to make frosting at 3:30am.

#the spoonie chef #the dinner diaries #recipes #baking #gluten-free

[v-tired-queer]

Didn't think I would hate staying home all day as much as I do, but here I am, absolutely despising it.

#thinking about saying fuck it and trying to work one more time #i haven't tried receptionist work yet and there's some openings in my area that pay well #but i have no idea how to start that conversation with my mother #who relies on me for financial support #what am i supposed to say? #'hey mom i know we had to wait months for me to even get an initial appointment with SSI but i'm really think this job could work out' #'so i'm going to cancel my appointments and apply for receptionist jobs instead' #ugh #i hate adulting #kit's diary 6 🖊 #disabled #disability #chronic disability #disabled adult #disabled queer #spoonie

[peachesnabsinthe]

I couldn't decide between purple and green today, so why not both?

😈✳️🔮🐉(also check out the new ring splints 😎)

#sesh with me #medical marijuana #plant medicine #spoonie #cw chronic illness #bong #bong rip #bong toke #marijuana #cannabis #weed #stoner #420 #silly goofy mood #personal #online journal #digital diary #journal #personal post #diaryposting #cw marijuana

[insidemydiaries]

I'm exhausted and ready to sleep for 48 hrs and wake up in a different time, a different day, where I don't feel this way.

#dear diary #diary #fnd #fnddiary #mental health #seizures #inside my diaries #hard day #spilled words #low spoons #spoonie #tired #exhausted #let me sleep #forever #mental illness #suicidal ideation

[spoopy-action-at-distance]

Petition to rename fibromyalgia "Bullshit Disorder". Not in the "made up bullshit" sense, but in the sense of "what is this bullshit?"

Much of said bullshit I'm already on very familiar terms with. But thanks to what I suspect is a funky interaction between my already wonky physiologicl regulation, additional burnout, and an additional-additional high-stress event, I am currently experiencing a Whole New Level of the bullshit. I cannot overstate how unspeakably Stupid it is and how much I Do Not Like It.

An example: The weather is cool and very wet. This is not new, and generally speaking I know how to deal with this. However, instead of starting to feel cold like normally, I will feel progressively worse and worse emotionally. This creeping sense of Seemingly Entirely Mental Badness gradually grows until everything that comes to mind just looks Bleak and Hopeless right off the bat. I can fight the impression, but it takes conscious effort with every. single. thought.

Then I put on something warm, like three layers of clothing and a sleeping bag. And like magic, poof! My mood improves almost instantly. Happy now, all is well in the world again. However, the downside of this is that all the joints in my body will now start to ache fiercely and turn my brain into hazy feverish mush.

What fresh hell is this. I don't want it. I miss my old friends, Random Knife In The Hip and Woke Up Too Fast So Might Throw Up And Faint. I want them back instead.

#chronic illness #spoonie things #some dedicated bitching to get it out of my system #spoopy's burnout diary #that's a tag now

[crazycatsiren]

*Do Not Reblog*

The disabled experience... I don't think anybody can fully understand unless they've gone through it themselves.

We are going to a store, where I know there will be a lot of walking, and it's a Saturday, so there will be a lot of people and it's going to be loud. I pack my noise cancelling headphones, along with the usual water bottle and sunglasses. I put on my compression socks and knee braces. I walk out the door with my rollator, put on my sunglasses, then put my rollator into the trunk of my husband's car. We drive off.

We get to the store. I take the rollator out of the trunk and unfold her. We walk into the store, I take off the sunglasses. We go to the food court for lunch first. I stand in line for a while before I have to sit down on my rollator seat while waiting for my order. I get my food and take it to a disabled friendly table. There's bacon and sour cream in my food. I take my histamine enzyme supplement and lactaid pills. I put on my headphones and turn on my music, something to focus on to reset my already garbled senses as I try to tune out the hustle and bustle all around me, ignoring the usual stares being that weird person over there with the rollator and the headphones as I eat.

We walk through the store. I walk in a steady beat to the music to pace myself. It's hot, and I have to stop for water breaks. I ignore more stares, keep my head high, mindful of my posture while trying to avoid the usual amount of children everywhere who are running around and not watching where they're going, who also stop and stare at me, directly in my path, too.

My husband stands in line at checkout, I find a spot out of the way, sit down on my rollator, and wait for him to pay. We exit the store. I take off my headphones and put them away. The clouds have rolled in so I decided to skip the sunglasses. I fold up the rollator and put her into the trunk. We drive off again.

I forgot my chew toy, so I gnaw on an empty soda bottle to keep myself from chewing my fingers. I get a little car sick from the heat and sensory overload. We arrive at the next store, where I go to the bathroom first thing after having drunk a good deal of water. We look for a new couch. After a dozen times of sitting down and standing up again, a dizziness spell hits. Luckily, we are in a furniture store, where I can actually lie down. And thankfully, there aren't too many people in the store, so it's relatively quiet. I wait for my husband to arrange delivery for the new couch and coffee table we just bought, as well as for my heart rate to return to normal.

As much as I can feel safer from a world that is not at all designed for people like me in this little bubble that I am able to create for myself, it can be a very lonely existence. And sometimes, it alone makes me want to weep.

#a day in the life of me #lorelei's mind #my thoughts #afternoon musings #disabled #spoonie #cripple punk #babe with a mobility aid #actually disabled #disabilities #do not reblog #disabled experiences #disabled life #spoonie living #diary

[crybaby-writings]

i am going to get a good grade in rheumatology patient, something that's both normal to want and possible to achieve

#my doctor was so proud of me today!!! #◇— ash's diary #rheumatoid arthritis #spoonie #disabled

[prosebyday]

It’s cruel to be so young and so sick. I play the role of health and productivity. It feels like a secret… am I finally mysterious? Self destructive behaviors are passed off these days as comedy. My peers are out partying late into the night, stumbling from one drink to the next, coughing smoke out of their lungs, free of pain and disease, with functioning organs. Meanwhile I have to get liver function tests every 3 months, because my life-saving medicine can also make my organs fail. I wouldn’t wish this on anyone. I wish I didn't have to explain my deviation from the norm. Autoimmune diseases suck. Instead of fighting infection, my immune system is attacking my joints, causing swelling, pain, and permanently deforming my body. To fight the disease, I take a medication to suppress my immune response. Now I’m always sick- colds, allergies, bronchitis, and seemingly a constant supply of infections. I’m forced to choose between destroying my immune system and my immune system destroying me.

Destroy me, already // Grazia Curcuru

#writing #quotes #prose #words #thoughts #autoimmune #ra #spoonies #sick #chronic illness #spilled ink #spilled words #spilled thoughts #prosebyday #diary #ramblings #journal