#spoonie help

[the-forestry-system]

EDS friends do you struggle with cutlery? I'm really struggling right now. at first it was just chopsticks and the forks with thin handles but now normal cutlery is causing me pain and is hard to hold. any advice on something I can do to help myself? is this just a me thing? do I just power through?

#elhers danlos syndrome #EDS #spoonie #spoonie help #chronically ill #chronic pain #adaptive devices #ehlers danlos zebra

[the-jesus-pill]

You’ve got to forgive yourself for being traumatized and needing to learn how to function again. 

Recovery isn’t always nightmares and depression, it’s forgetting to eat, being scared of what others might see as completely normal things, it’s getting random panic attacks, not knowing how to take care of yourself, not knowing how to live like an adult, even if you’re twenty, thirty, forty, fifty, of feeling like you’re failing to function in a world where everyone seems to have their shit together. 

If you need help, ask for it. Go to forums and ask for advice. Take advantage of community resources. Buy pre-sliced veggies and fruits, eat instant meals if you can’t cook for yourself today. Hire someone. Ask a neighbor for a favor. Buy any item you think might make life easier, even if you feel like you aren’t ‘disabled’ enough to have it. 

Some of the depression posts (ie open your windows, take a shower, go outside, call a friend) are really helpful but they’re not always enough. I’ve found advice for spoonies, people with chronic pain or other disabilities have the best tips because they know what it’s like to be bedridden, out of energy, stuck in a brain fog. 

You may never return back to the energy you had when you were younger and you might always need to use crutches to help you through life. It’s the same with medication. 

Trauma is a real thing that happens to you, it physically alters your brain and it’s alright to have lasting scars. 

You’re not broken, your life is not over and you can still be happy. 

It’s not your fault.

#felix speaks #trauma #recovery #deconversion #ex cult #ex religious #ptsd #cptsd #healing #disabled #actually traumatized #spoonies #things i need to remind myself with too #it sucks to have to come to terms with the fact #but youll be so much better off once you stop denying yourself the help you need #also re: buying items meant for the disabled #do it! #you are not taking resources away #if you need it you need it #and the more in demand these items are the better theyll be made in the future

[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

[spoonful116]

The most punk thing you can do as a disabled person is love and value yourself and not push yourself past your limits for the sake of other's approval

#spoonie #disability #chronic disability #cripple punk #punk #cripplepunk #cripple #crip punk #self care #self help #self image #self improvement #self love #mentalwellness #mental health

[neuroticboyfriend]

tip for people with chronic pain/fatigue: lay down occasionally. haven't laid down in the past 3-5 hours? do it (if you can) and see how you feel. i've found that i'll lay down in bed just to be in my room, but then i get hit with an instant wave of relief because just sitting on the couch was too much for my body, and i didn't realize it.

when you're in pain or fatigued for a long time, your awareness of your body may get wonky - especially if you already struggle w/interoception due to neurodivergency. so. test it, sometimes. you can apply it to other things too: sit if you're standing. stop doing a task if you've been doing it for a while. have a small snack to see if you're hungry. etc. etc.

#softspoonie #disabled #disability #chronic illness #chronically ill #spoonie #spoonie tips #chronic pain #chronicpain #chronic fatigue #actually chronically ill #self care #interoception #neurodivergency #actually neurodivergent #neurodivergent #neurodivergence #health #self help

[800-dick-pics]

Help a chronically ill person eat!

Hey im struggling to eat any soilds due to being in a pretty bad chronic illness flare. I cant keep anything soild down so I need liquid nutritional shakes to help replace the calories im not getting from soild food. The only brand my stomach agrees with costs $30 for 6 shakes so Im really not in a place to buy 2-4 boxes at the moment.

If anyone could help me get a few boxes of shakes that would be amazing! $90 would get me 3 boxes!

CA: $sleepyhen

VN: wildwotko

Dm 4 Paypl

#chronic illness #chronically ill #heds #gastroparesis #spoonie #im living off of broth and yogurt so if you can help

[thedisablednaturalist]

I think when people think of mental illness and what helps, especially with things like anxiety and depression, the treatment involves pushing yourself. Pushing yourself to get out of bed, to exercise, to take a shower, to go out in public, to order your own food from the cashier, etc.

And because the mental health movement has grown so much, people think that's the default of ALL illnesses. That the only way someone will get better is if they push themselves. That practice makes perfect. That you'll become more comfortable or strong over time the more you do something.

But what people need to realize is, with physical disabilities and chronic illnesses, pushing yourself in most cases is DETRIMENTAL. Pushing yourself past your limits can lead to flare ups or further injury. That's why it's important to know your limits, how certain activities may affect your condition, and learn how to either adapt or get help to complete the activity in question.

Also, most of us are already pushing ourselves. Most of us don't have access to the help or equipment we need. Most of us live in places where we frequently encounter inaccessible obstacles. Most of us NEED to rest.

So please don't try to be our physical therapists or doctors. There are people specifically trained to help us navigate our own conditions and limitations. There are people trained to help us strengthen our body's resilience without causing flare-ups or injury. Do not tell us "it'll be good for you" or "you need the exercise" when we say something is too heavy or too far or when we say we need our mobility aid(s). Your friend with depression may need to be encouraged to get out of bed, but your friend with chronic illness definitely doesn't.

Respect our rest.

#wrenfea.exe #DISCLAIMER: dont take this as me saying you should be pushing your mentally ill friends #this is more about how physical conditions often differ in how they are treated #also dont like. force your friends or anyone with anxiety to do things they dont want to #thats what therapists are for #also most mental illnesses require medication alongside therapy before they can get better #but even chronic illnesses and disabilities that benefit from exercise still require knowing your limits #and not being pressured to push past them #ive noticed some professionals who help both mentally and physically ill patients tend towards the push method #like my therapist and sometimes my counselors fall back on that method #and i have to remind them i am already pushing myself #and i need to adapt rather than push forward #chronic disability #chronic pain #spoonie #disability #chronic illness #cripple punk #cripplepunk #cpunk

[lavender-0-menace]

anyone know any yoga for beginners that helps with chronic pain? dm or reply

#trying to get a hold for my chronic pain #yoga #chronic pain #spoonie #pkd #polycystic kidney disease #spoonie help

[forsakeofabetterusername]

I made a zine about adjusting cheaper wheelchairs, after adjusting my NHS wheelchair.

Notes: Your wheelchair ‘service manual’ is a good resource for adjustments! You can often google them. Also, with the wheel adjustments, be prepared to move the breaks. Google how to measure for a wheelchair to find your seat width, and if you want to get extra, look at seat depth. Leg length is usually done by adjusting the footplate height.

Image description and printable version under the ‘read more’ .

Image Description:

An 8 page zine. Both images have the same content but the first one is arranged to be read on a computer. I am going to describe each page.

First page reads “A cripple’s guide to.. making a cheap(er) wheelchair work for you” and in smaller writing “by Sock - who uses an Invacare Action 2NG”. There is a drawing of a wheelchair in the centre.

Page 2 reads “Choosing a wheelchair. Look for adjustability (can you change wheel height? COG?), seat width (as close to your size as possible), and arm rests that can be lowered/removed.” Each item has a small drawing illustrating the point.

Page 3 reads “Adjusting a wheelchair. You will need… Allen key set (bike ones are good!), Pliers (for holding bolts) and Phone (for access to manuals, taking photos at each step.” Each item has a small drawing of it.

Page 4 reads “1. Adjust Wheel height. This can be done where the wheel “plugs in”. Your fingers should touch the wheel hub centre. If you can, move the wheel forward too (centre of gravity adjustment).” There is a small drawing of the wheel base, an arm reaching down to touch the centre of the wheel and a wheel base with an arrow pointing to the right showing it being moved.

Page 5 reads “2. Arm rest adjustments. Get your armrests as far down and as far back as they go. I keep mine on because of muddy weather/to protect clothes from spokes but you can also just remove them!” There is 2 drawings of a rounded and straight arm rest.

Page 6 reads “3. Modding castor wheels. Adjusting the height will change the seat angle. Smaller castor = easier turning, but makes rough pavements harder.” There is a drawing of a tilted chair with big castors and a straight chair with small castors, with a double pointed arrow between, with the caption “Play around!”

Page 7 reads “4. Footplates. You can take the footplates off and toe propel. You can make a foot sling out of a belt/luggage strap/paracord.” Both have an accompanying illustration. Then there is a note saying “if you have poor circulation, weakness, etc. oh might just want to keep the footplates on”.

Page 8 reads “5. Cushion. You need a cushion for your chair. Depending on how long you sit/how bony you are, you might need to spend a little more” then “£: Foam. ££: pressure relief cushion. £££: EBay/second hand for jay, invacare, low zone etc.”

End.

Printable version:

#forsakeofabetterarttag #hope this helps someone #wheelchair #nhs wheelchair #hospital wheelchair #cripplepunk #physically disabled #heds #spoonie #potsie

[labmousegirl]

are you disabled or suffer from other chronic conditions that often leave you bed bound? do you often feel like you’re in the “damn bitch you live like this?” meme because cleaning is too exhausting?

my protip is get yourself one of THESE bad boys and hang it by your bed

it’s an over the door shoe rack and the pockets are perfect for holding a lot of household objects.

you can use the pockets to store trash, snacks, meds, and water bottles. if you worry about hygiene, you can also keep some for dry shampoo, deodorant, body wipes, clean undergarments, or toothbrush materials. on good days, you can clean it out and restock it, or have someone else help you. on bad days, you won’t have to worry about getting food and you’ll be able to feel a little better about hygiene.

it’s also really great if you want to keep your hobbies close by!! i can often only work on my bed, and then i have to worry about putting everything away if i have to lay down. if it’s a hobby that has materials that can be stored in the pockets, it can feel more accessible to jump in and out of and take less spoons to set/clean up.

#spoonie #chronic illness #chronic pain #chronic fatigue #disability #tagging for exposure bc i want this tip to get out it helped me a lot #feel like shit today might as well share this tip so i feel sort of productive #worth mentioning i suffer from chronic illness and fatigue that they’re still testing (altho medicating under the assumption of narcolepsy) #but i have trouble sitting and standing for long periods so i spend a lot of time in bed and so whenever my bed gets gross i feel gross #so this is based on chronic fatigue mostly

[youngchronicpain]

Hey, you! Try that mobility aid you've been thinking about. If it helps you, then you need it. Easy as that! Most people start using mobility aids on their own, without a doctor recommendation. And that's perfectly normal and okay! If you're worried about using it correctly, there are many guides to get you started. I know it can be scary. But mobility aids can open up your world in so many ways. If it helps, then you need it!

#this is for the people who are scared to try mobility aids because they can “get by” without one #but just because you can suffer through a day without one doesn't mean that it wouldn't help you!! #mobility aids #chronic pain #chronic illness #disability #spoonie

[this-smile-is-real]

11 months ago I was diagnosed with Functional Neurological Disorder and with Fibromyalgia earlier this year.I have also dealt with cPTSD and an eating disorder for the last 20 years.

I have been mostly bed bound for 12 months and have spent 6 months of this year in hospital. I cannot currently walk more than 20 metres without needing a wheelchair to mobilise. I have been unable to drive for the last 12 months due to continued non-epileptic seizures.

I am needing continued help to manage all of my medical bills, specialist appointments, medication, transport etc.

I am attaching a PayPal link if you feel at all inclined to donate to help me manage week to week as the pension I’m on doesn’t even cover basic expenses for each fortnight after rent and each of my medical team appointments.

I would be so grateful for any donations, reblog etc. Thank you in advance x

#fundraising #donations #donate #chronic illness #FND #functional neurological disorder #fibromyalgia #disability #disabled #actually disabled #mobility aid #spoonie #prayer request #prayer #Christian #faith #PayPal #raising money #reblog #help #help needed #medical expenses #medical bills #ed recovery #mental health #mental illness #recovery

[hellyeahsickaf]

Me, coughing up blood and taking my last breaths: I don't need help I'm fine i got it I probably just need a nap

#i very much struggle to ask for help because I feel like a burden 🥲 #disability #chronic pain #cfs #fibromyalgia #chronic illness #chronic fаtiguе ѕуndrоmе #actually disabled #me/cfs #spoonie #cfs/me #long covid

[localratwithcowboyhat]

Ahw what’s this, the Human nervous system what a silly lill guy look at him. Look at him CAUSING ME SO MANNY FUCKING PROBLEMS

#ramblings #silly lill personal post #disabled #anxitey #cfs #cronic fatuige #this is a cry for help #spoonie #cronic pain?? #tic disorder

[neuroticboyfriend]

tip for people with chronic pain/fatigue: lay down occasionally. haven't laid down in the past 3-5 hours? do it (if you can) and see how you feel. i've found that i'll lay down in bed just to be in my room, but then i get hit with an instant wave of relief because just sitting on the couch was too much for my body, and i didn't realize it.

when you're in pain or fatigued for a long time, your awareness of your body may get wonky - especially if you already struggle w/interoception due to neurodivergency. so. test it, sometimes. you can apply it to other things too: sit if you're standing. take a break a task if you've been doing it for a while. have a small snack to see if you're hungry. etc. etc.

#softspoonie #disabled #disability #chronic illness #chronically ill #spoonie #spoonie tips #chronic pain #chronicpain #chronic fatigue #actually chronically ill #self care #interoception #neurodivergency #actually neurodivergent #neurodivergent #neurodivergence #health #self help

[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!