#spoonie help

[firminfollowing]

Having the worst flare up ever right now :(

Tw: flare up vent, food and medical talk below the cut, possible emetophobia warning

I’m pretty sure I have some kind of delayed gastric emptying, and it’s been getting progressively worse these last few years, especially when the flare ups hit.

Water is my enemy but if I don’t drink it I’ll die so I have to choose being mega dehydrated and eating or being moderately dehydrated and not eating, and I am. So. Hungry.

I’ve found smoothies somewhat safe, but I can only have like 1/2 a cup at max and it takes upwards of an hour to finish.

I’m so nauseous and my stomach hurts so bad. I can tell like I can feel the C food and liquid in my throat/stomach, especially when I’m drinking.

This flare up has lasted nearly a week now (6 days), doesn’t seem to be going anywhere anytime soon, and I’m getting a little desperate. Have a GP appointment tomorrow, though, thank god.

Any suggestions for safe food ideas to try to eat, just something small and nutrient dense (good bit of sodium. maybe also protein?) to get down, would be great.

[thyroiddiseasediaries]

Chronic illness friendly remote jobs?

I’ve been taking care of my dying mother for the last few years and when she died, I was promptly evicted.

I need to work towards finding a job, but I can only do something that’s remote right now. Does anyone have any tips on where to look and find legitimate jobs that is over the phone or remote etc

Any tips would be greatly appreciated.

I very well think I may go back to school and become a counselor or get a degree in social work. I don’t know. But I need a job too.

I need to find my own place, I need an income.

I don’t know what to do.

I miss my mom and I wish I had better control of myself when she first died. I grief spent too much of all that I have.

Any advice, anything would help. Thank you.

🖤

[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?

[opalsiren]

hello for the love of god hi. if you have a chronically ill/disabled loved one who is constantly flaking on plans, unable to attend events due to illness, please please please keep inviting them to things anyway. being excluded from events due to illness or the assumption that we won't be able to attend is the worst feeling, even if the assumption is true. a cursory 'hey we are planning to do xyz, i know this thing isn't always easy for you but we'd love to see you there if at all possible' truly means the world. better yet, make plans with your chronically/ill disabled friend in mind and help them navigate the accessibility of it all or choose what you do together. failing that, if you haven't explicitly been told to stop inviting them to things, continue to include them in your plans because being deliberately excluded hurts like hell

[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.

[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

[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.

[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

[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.

[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:

[insert-name-heres-things]

Happy Disability Pride Month!!!

Remember Folks:

- SELF CARE IS NUMBER ONE

- Use your spoons sparingly! Here’s some spoons to go: 🥄🥄🥄🥄🥄🥄🥄

- Clean your mobility aids! (Seriously dude when was the last time you wiped that shit down with an antibacterial?)

- Accommodate yourself, as others will follow.

- Make goals within your reach and abilities

- DO YOUR COPINGS SKILLS

- Remember to stay hydrated and take your meds!

- For my fellow heat sensitive homies, stay cool this summer! A cold rag draped behind your neck, airy clothing, a small portable hand fan, keeping ice packs ready, cold water and expecially cold electrolyte drinks, all do wonders!

- For my fellow autistic folks, don’t be afraid wear earmuffs, stim, use chew charms, whatever it is that helps you regulate. You don’t have to mask if it’s something that isn’t benefitting to your life.

- POTS havin mofos like me, salt the ever loving fuck out of your food. Try different foods with salt, such as fruits and vegetables! I’m currently eating a salty tomato. Drink lots of water, I’ve been aiding gateraid packets to my water and it’s made a HUGE difference, especially as someone who hates drinking water.

- Those with PTSD for whatever reason, I wish you safety and support as you learn to cope and hopefully heal.

- I don’t know exactly what to say to others with H-EDS, as I’m still understanding this disorder other then BE CAREFUL WITH YOURSELF THIS PRIDE MONTH. I swear to god we are the most accident prone mother fuckers lmfao-

- If your immune system is all fucky like mine, keep clean and be sanitary, communicate with others that if they’re sick you can’t be around them, and wear a mask if you feel like that’s the right option for you. In my hometown I’ve gotten yelled at more than once for wearing a mask post-covid, however you can’t let someone else’s ignorance result in your own suffering.

- Don’t forget to move around and stretch! A little movement can do a lot for your body.

- Check in with your disabled friends! Try and see if there’s any way you can help one another, see where both of your strengths and weaknesses lie, and swap some spoons!!

- Be aware of what triggers your disorders. Whether if it’s caffeine triggering bipolar episodes, the weather causing fibro flares, big changes causing meltdowns, overexerting your hypermobility, whatever it is, it matters. Listen to your body and mind.

- Don’t be afraid to call out that doctor who isn’t listening, dismissing your symptoms and medically gaslighting you.

- While it may not seem like a big difference for some, trust me when I say your appetite is so important! Remember if it comes down to it, that it’s better to eat something, ANYTHING, than nothing at all. 

- To that person who might be hesitant, ashamed or might be questioning wether or not they should use a mobility aid, if it’s the difference between you being stuck at home vs going out and living some life… USE THAT MOBILITY AID!!! Same goes for braces and any other tool that may help you live a better quality of life.

- Be accepting towards those with disabilities different then your own- remember this month isn’t a competition about who’s struggling the most, rather to understand that people of physical, psychological, sensory, neurodivergence, and even undiagnosed disabilities all share one thing in common.. WHICH IS BEING DISABLED!

- Doesn’t matter who you are, how young or old, black or white, thick or thin - the disabled minority is one you can end up becoming a part of at any time, and likely will if you live long enough. Disability doesn’t discriminate, so EVERYONE should be advocating for disabled people’s rights.

- And of course, have pride in being disabled. This shit is fucking hard, but if you’re reading this, you’re doing it. Just being here today and doing what you can handle or manage, is doing your best, and that’s enough. You don’t have to push yourselves to impossible lengths to be proud of yourself.

Here, have the disability pride flag:

[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-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

[hellyeahsickaf]

Cooking While Disabled

One of the things I miss most about being less disabled is cooking. It was one of my favorite things to do and something I've always been good at.

On good days there are things I can do that make it easier. It's not the same as before, but I hope that sharing what makes it possible for me to cook helps others who struggle with it.

Tips for cooking while disabled:

You can incorporate precooked food in your meals. For example, stir fry with precooked rice with the ingredients of your choice, or taking frozen pasta (like the ones with maybe sauce and a couple other things) or plain microwave pasta (I prefer these, but heat it first) and putting it in a pan adding other ingredients like vegetables, cheese, garlic, etc

If it comes frozen or canned that can really help. Frozen rice you can just microwave, frozen cut veggies and garlic and onions are good as well

Buy a chopper with different shaped blades, spiralizer, electric slicer/grater, food processor, or any appliance that will save you energy. Ideally machine washable. Stand mixers are also better than manual ones. Especially helpful if you have joint/wrist issues

You can always prepare ingredients ahead of time. I find that sometimes it helps to prep (chopping or mixing ingredients, etc) earlier in the day or even a day before. Then you can put it in the fridge or freezer until you're ready to cook the full meal

Look up easy recipes or recipes for elderly/seniors. With the latter you may find more nutritionally balanced food but an unbalanced easy meal is better than none

You can sit while you prepare ingredients.

You're allowed to take breaks. You can turn the stove off, maybe put a lid on it to retain the heat, sit down, maybe take something for your symptoms. Some things you may not be able to stop in the middle of like making pancakes or deep frying something, but if you're making soup or curry or chili or something, often you can turn it off for a bit and take care of yourself.

If you need help and can get it, please ask for help. I know many of us need to work on asking for help including myself. Even if it's just washing the pots and pans or chopping something. You are not a burden you hear me?

Stretch before and after cooking just as one would before a workout. It will likely lessen any joint pain or stiffness as you are still exerting yourself

Listen to your body. Just as you're allowed to take a break, you are allowed to decide you won't be able to finish what you're doing. You may put away your food before it's done (if this won't ruin the meal). You are allowed to leave a dirty pot in the sink and come back to it later (just make sure you or someone else does before it gets gross). You can wash them in the dishwasher. I know this is bad for the seasoning on pots and pans but you can reseason them to be nonstick again and use nonstick spray

You can buy seasoning mixes rather than using individual seasoning. Instead of parsley, oregano, basil, etc you can buy Italian seasoning. Instead of paprika, pepper, cumin, oregano, salt, etc, you can just get taco seasoning. This may sound obvious but it can save a lot of time and energy

An issue I have is buying perishable ingredients thinking I can use them, having a bad week or two, and the ingredients have gone bad. Try to plan out your meals before shopping and ask yourself if there's an easier alternative for any ingredients. Maybe pre chopped fresh onion instead of a whole one, sliced mushrooms instead of whole, frozen vegetable blends instead of individual, powdered ginger instead of the root, bullion instead of stock that you may not be able to use all at once. I know this is like one of the other points but these are what I find most helpful

Use supercook.com! You input the ingredients you have on hand and you'll get a list of recipes you can make with what you have. Often there's a wide range of complexity and difficulty

Make enough food to freeze or refrigerate leftovers. It helps if you can portion it into single servings in Tupperware or freezer bags. You can prepare frozen burritos for your next few lunches or dinners, separate portion sizes of spaghetti, portion salads, etc

Feel free to add any additions!

[seraphsfire]

any other spoonies or people with fibro/chronic fatigue/myalgic encephalomyletis/adhd/etc start just *trying* to think of the steps to a complex mental task have an immediate brain shutdown and get sleepy/fatigued/feel drugg/ed and physically exhausted immediately after doing so bc i feel like im going crazy and googling/duckduckgo-ing yeilded only like, mayo clinic articles defining chronic fatigue so. lol

[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