#the life of a spoonie

[daltongraham]

Well. I got a shot in my hip today, for trochanteric bursitis. VERY painful, but mercifully quick. The doc was cool, I'll go to him for my knee too. But he wants me to do physical therapy which I do not do not DO NOT want to do. Isn't it enough that I'm trying to go for fucking walks? Geez.

I'll probably wait until after the gorram colonoscopy to set up PT; I've got enough on my plate. I think there are 3 doctor appointments between now and then anyway, as well as other commitments.

#the life of a spoonie

[onlytiktoks]

#tiktok #disability #disabled #spoonie #life hacks

[potsiepumpkin]

When the chronic fatigue is chronic

#chronic illness #chronic pain #disability #pots syndrome #postural orthostatic tachycardia syndrome #chronic fatigue #invisible disability #fibromyalgia #spoonie #chronic life #hypermobile eds

[eclectic-ways]

They should publish books in this format.

FYI: There are apps and plug-ins of this Bionic Reading for Google Play, Chrome, Microsoft Edge (Internet Explorer), Firefox, iOS (Apple) and on WEB

#bionic reading #bionicreading #adhd #living with adhd #adhd things #adhd brain #adhd tips #adhd warrior #helpful #brain fog #living with chronic illness #living with fibro #spoonie witch #life hacks #life hacks for adhd #life hacks for spoonies #chronic fatigue #adhd stuff #attention deficit disorder (add) #add #attention deficit #attention deficit hyperactivity disorder #spectrum #dyslexia #dyslexic #neurodivergent #neurodivergency #focusing problems

[chronically-evie]

my mom keeps trying to get me to go to the ER when im having a flare up and i have no idea what to tell her.

because ive BEEN to the ER before. you wanna know what they did? while i was sweating, shaking, and sobbing, curled in a ball of pain?

they asked me if i was on my period. when i told them no, they asked me if i was pregnant.

when i told them no, because i wasn't sexually active, they forcibly tested me anyways, and then when it came back negative said, "well maybe you should just take a few deep breaths", gave me liquid ibuprofen, and sent me home.

disabled people, in this particular situation disabled afabs, are never fucking listened to.

the ER staff literally LAUGHED at me multiple times. they pointed at me when i was having one of the worst episodes of my life and snickered.

so no, i do not want to go to the fucking ER. my heating pad, ice packs, and nausea meds are going to help me more than anything a hospital could do.

#postural orthostatic tachycardia syndrome #pots syndrome #disability #disabled #pots #potsie #spoonie #ehlers danlos zebra #chronic pain #hypermobile ehlers danlos #actually disabled #physically disabled #disabled community #disabled life #chronic disability #physical disability #disability advocacy #disability awareness #disability rights #disabilties #invisible disability

[bulldagger-bait]

I've always been curious to know this about the people around me. Most people have been in severe pain, but in my experience few have had what they would say is their 10/10 experience. I guess it's just something I find fascinating, as I had my 10/10 experience quite young and I sometimes forget that not everyone has. In my opinion it changes your relationship with pain and how you engage with it afterwards. If you answered yes, feel free to elaborate on your circumstances in the tags!

(reblog for a bigger sample size etc)

#I was 13 and mine was after spinal fusion surgery for scoliosis. T6-L4 fusion and when i woke up in spinal shock it was agonising pain #they had to give me ketamine before the pain died down and even then it was only 9/10 #i was on a fentanyl drip for a few days afterwards and ever 5mins and 50sec id be dosing myself #my dad would take over my button while i was sleeping and set a timer on his watch to push it at those intervals #it was the only way i could rest as without it id wake up in blinding pain #definitely the hardest experience of my life. sometimes i forget that i went through that and came out the other side. #polls #chronic pain #disability #spoonie #cripple punk #cripplepunk #the tags ive chosen kinda skew the balance in favour of the yes but idk what else to tag it with. #it would be interesting to see if other disabled people have also had a 10/10 and how common that is

[thelupuslady]

#autoimmune #lupus #lupus warrior #spoonie #fibromyalgia #lupus advocate #lupus fighter #strong #chronically ill #pots syndrome #posturaltachycardiasyndrome #postural orthostatic tachycardia syndrome #ehlers danlos awareness #ehlers danlos life #systemic lupus erythematosus

[800-dick-pics]

Help Me Get a Service Dog to Live a Better Life!!!

I have been waiting for years for and an opportunity like what I have just been given. I have been researching service dogs extensively for years, and now I have an opportunity to get a prospect for one…… but in 2 WEEKS! I need help funding the cost of the puppy as well as the flight ($2500 approx) to get across the country. While this has been on short notice please know that this has not been a rash impulse choice, this all has been in the making for sometime now, and there is already a dog picked out that is perfect for my needs. My community is ready and willing to support me through this process of training a service dog and think it could be one of the best things for my health.

Having a service dog would allow me to work a traditional job again, would allow me to have more freedom and autonomy, this is going to change my life in a very impactful way. I want to be able to leave my home without fear of passing out and falling, I want to be able to work again, I want to be able to get out and be a human being again, to finally have the ability to do things by and for myself!\ For the first time in a while I have hope for my future, hope that my quality of life can improve, hope to feel like me again.

Please if you can share and donate! This is vital to my health, my quality of life and future.

$2,600 GOAL!!!!!!!

CA: $sleepyhen

VN: wildwotko

Dm for Paypl

#chronic illness #chronic pain #spoonie #pots #ehlers danlos syndrome #service dog #please help me get my life back #I am legit crying bc i have the opportunity to get a prospect which wasnt in the cards before #This would help me so much and i might be able to have job again!!!! #thank you to everyone who shares and cares in advance muah!

[lifewithchronicpain]

If you don't need a cane, but you get one to signal disability because sometimes you get faint and need to sit, or whatever, as a cane user for years, go ahead. Please, if it makes claiming accomodations easier for you, even if you don't need it to walk, I don't care. This is your permission if you needed it.

Can I suggest that you can get a foldable one at CVS (they're great) so it's there when you need it? Shits fucked up, do what you need to do. Just beware there are assholes that won't care about the cane. But overall, it does make things easier and is easily purchased. Go for it.

#disability #chronic pain #chronic illness #spoonies #mobility aids #advice #accomodations #spoonie life #ableism

[chronicallyillandcoping]

Sometimes i find myself putting off taking pain killers usually with the mental reasoning that I'm not in a really really high amount of pain so I dont need it yet.

This is a reminder to myself and anyone out there that needs it that you dont have to wait to be in a really high amount of pain before you take pain relief or do things that will make you feel better.

#disabled #chronically ill #chronic fatigue #chronic pain #disability #actually disabled #chronic disability #disabled community #disablity #spoonie problems #disabled life #chronic illness #chronic illness problems

[4spooniesupport]

#spoonie #chronically ill #chronic illness #disabled life #disability #invisible disability #disabled community #wheelchair #accessibility

[hussyknee]

I am not broken. I have been wounded.

I am not damaged. I have been hurt.

I am not useless. I am making the best of my limited capacity.

I am not lazy. I need rest to heal.

I am not unreliable. I live an unpredictable life.

I am not irresponsible. I have limitations.

I am not incompetent. I am learning at my own pace.

#disability #ableism #internalized ableism #spoonie #affirmations #disabled life #chronic illness #chronic fatigue #chronic pain #mental health #self-talk #healing #knee of huss

[tucknroll]

when i say “life is such a pain,” i don’t mean it in a nondisabled ‘something unfortunate’ happened way but in i am disabled and i am in so much pain.

#cripple punk #invisible disability #actually disabled #disability #physically disabled #cpunk #crip punk #spoonie #chronic pain #chronic illness #chronically ill #chronic fatigue #disabled struggles #disabled lives matter #disabled life #disabilties #disabled #cripple posting #actually crippled #cripplepunk #cripple shit #cripple problems #cripple life

[lolliepopcrusader]

Calling all chronic creatives - here's how to up your crochet game!

I'm an avid crocheter, but holding the hook for long periods of time became exhausting and painful. Being chronically ill, losing the ability to enjoy my hobbies was tough for me accept.

My husband took me to the craft store and we purchased a ergonomic crochet handle. This handle needed to fit my criteria;

able to hold a variety of hook sizes

hold up to high tension crochet projects (I do a lot of amigurumi crochet, which you need to complete with tight tension)

reduce my wrist/hand pain

reduce the amount of grip strength needed to hold the hook to avoid fatigue

This ergonomic crochet handle *seemed* to tick all these boxes. It was quite an expensive purchase and to be honest, I was disappointed in it in all aspects.

The purchased handle uses small rubber stoppers to hold the crochet hook in place, but as you are crocheting the hook works loose and spins around inside it. The handle itself was too small, making it painful to hold. I had to use a lot of grip strength to keep it in my hand, which is what I was trying to avoid by purchasing the darn thing. The little knobbly bit at the end really dug into my hand and hurt. It was so annoying to use and I gave up on it altogether after three days of using it (not to mention one of the rubber pieces broke apart within hours).

I expressed my disappointment to my husband, and he decided to come to my rescue! Over the course of a week, he designed me his own ergonomic crochet handle in a computer program called CAD. He then printed it out using his 3D printer. I can't even begin to tell you how much I love this new handle - its a game changer!

During the design process, he took into consideration all of my complaints about the disappointing handle and my criteria that I had listed. The handle he designed is bigger, so it uses less grip strength to hold it in place which also reduces my pain.

Instead of using rubber stoppers like the other handle, he designed a 'lock and key' system for keeping the crochet hooks in place and it works fabulously! The hook never moves and I'm really rough with my crochet hooks. It holds up to my high tension crochet projects and I have completed many amigurumi with it, even small, intricate items. Since it is designed with the lock and key system, my husband was easily able to print different keys to be able to hold multiple sizes. I've got keys ranging from 1.25mm all the way up to 6mm!

I can now crochet for hours on end and I swear my crochet skills have gotten so much better.

After expressing my delight at the crochet handle my husband designed for me, both him and I want others to be able to experience the freedom that I now have when crocheting. With chronic illnesses, its important for you to be able to continue with your passions as much as possible, so we have decided to make this crochet handle a sellable physical item for others to enjoy.

Here's the link to purchase one if you would like to give it a go!

Each crochet handle will come with the hook sizes;

1.25mm

2mm

3mm

4mm

4.25mm

5mm

6mm

If you want other hook sizes, send us a message and we can design one.

The cost of the handle and keys covers the cost of the 3D printing material, we are not making a profit off of this because we want as many people suffering from chronic illness to be able to enjoy crocheting again. We are happy to post internationally as we are based in New Zealand, send us a message before purchasing so that I can get you the cost of shipping.

I hope you will love this crochet handle and hook set as much as I have!

#cfs/me #chronic fatigue #chronic illness #chronically ill #me cfs #myalgic encephalomyelitis #spoonie #chronic fatigue syndrome #chronic pain #mobility #mobility aid #crochet #crocheting #amigurumi #yarn crafts #yarn #hobbies #creativity #life hacks #hobby #craft

[spoonful116]

"Have you considered that depression is causing your pain?"

"Have you considered that constant pain is depressing?"

#spoonie #disability #chronic disability #spoonie life #disabilities #chronic pain

[crippledbanshee]

"I don't know if I am disabled enough to use a mobility aid, but it has helped me a lot..." Sweetie, if it's helping you it's because you need it, completely able-bodied people don't need mobility aids to live to the fullest. If you can, use these aids, you deserve it.

#disability #chronically ill #cripple punk #disabled #spoonie #chronic fatigue #cripple life #chronic pain #physically disabled #mobility aid #cane #wheelchair user #mobilityaid #ehlers danlos syndrome #hypermobility