#spoonie help

[spoonie-on-wheels86]

[cbspoons]

So I just went out for a walk and I have just had a fall. My left knee took the brunt of it because my left ankle gave way. My hands are all cut up and bloody,my left knee is all cut open and swollen. I am in so much pain right now!

[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.

[headpainmigraine]

So, I've just started increasing my dosulepin to 3, after 14 days on 1 and then 14 days on 2.

I think it's had an okay effect on my migraines (I don't think my neuro will agree), but lately I've been getting these weird headaches

They're always on my left hand side, incidentally the same side I keep getting the supraorbital nerve pain

they're located like an inch above my ear, in the place between the corner of my eye and my ear

they feel like I'm getting a cramp in my brain, like a twist of really deep pain that comes out of nowhere and lasts for 15-30 seconds before releasing and then just leaves an ache

kinda feels like a toothache in my head

It's not a stabbing/piercing pain, so I don't think it's an ice pick headache (I've had those too)

and it's not like the nerve pain, so I don't think it's cluster headaches (surely they'd hurt more? unless I'm just used to it because daily migraines have mucked with my experience of pain?)

But I don't know what else it could be.

I'm still taking sertraline, just in the mornings now and the dosulepin in the evening, and that's the only med change I had before this started happening

Has anyone ever experienced anything like this, and what did it turn out to be?

I thought maybe 'brain zaps' because dosulepin is an antidepressant, but I've never had that coming off an antidepressant before, I'm not coming off any of them, and I've never felt them, so I don't know if this is what they're like?

They make my head ache, they make me feel nauseous and sometime I feel it in my neck/shoulder on the left side, but not enough that I'd think it was a muscle spasm thing

Does ANYONE know what this could be, or has anyone felt anything like it before?

I'm still waiting on an MRI appointment, but it's freaking me the math out, man

[traumathiccndramatic]

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.

🖤

[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

[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.

[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-on-wheels86]

Check me out on BlueSky!

[cbspoons]

I am having issues with swallowing and feeling like there is a constant lump in my throat. its so uncomfortable! if you guess suffer with this,what do you do that helps?

[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

[traumathiccndramatic]

I wish someone anyone, would love me and take care of me. The way that I would take care of them, or just about anyone that needed it.

I hate being completely and totally alone without actually being alone.

I miss my mom so much. There was so much she couldn’t do, but if she could? She would. I don’t feel that anymore. It was just her.

I am sick, it’s my first year without my mom. It hasn’t even been 6 months yet and I just want to die. I told her this was gonna happen. Why couldn’t you try to take care of yourself for me mommy?

How could you leave me here alone????

I knew dad would, he was never there to begin with. God dammit. I want to fucking die. I had to fucking parent you and you leave me???

I’m never going to feel love again.

[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:

[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:

[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!

[sciaticsilver]

going out makes me tired but staying in bed makes me tired, why can’t my body decide on one or the other