Chronic Frustrastion Syndrome

being chronically ill is so fun bc u get one diagnosis and then u get like 7 other issues for free

if upon being told about someones illness/condition, your first thought is to say “have you tried X?” i want you to step back for a moment and think to yourself “if i thought of X after hearing about this condition for the very first time, the person who has this condition very likely has thought of this and possibly tried it already”

we are tired of constantly being told to try the same things by people who didnt know our condition existed five minutes ago.

you dont need to offer any solutions or try to fix us. i know it might seem like a polite thing to do or that it shows you care, there are other ways to show us you care.

feeling like it's time to bring this back

Doctors are like HERE is your APPOINTMENT if you are late I WILL PERSONALLY kill YOU but when you show up on time they are like I; am so so sor..ry.. Theree, will bbe abt housand yeaars, delayy

This post is so funny bc people are like "that's bc of all the other people before you who ran late or had a problem that took too long (more than 15 min)" wow that's crazy, it's almost like there's an industry-wide problem with overbooking doctors based on the deranged idea that somehow healthcare will be able to be squeezed into the time it takes to microwave a tv dinner and every patient will never have any issues with travel time and that problem is passed onto doctors and patients. It's almost like it's a really bad quality of care to expect someone to cancel their entire days activities to see a healthcare professional once every one to six months for 15 minutes.

accessibility features i think tumblr work on introducing instead of fucking up the dash. again.

A real, unbutchered pain scale.

Based on this, my base level of pain is a 7. Sounds pretty accurate

Now available on Disability Horizons Shop!

hello people who use forearm crutches who have used/sometimes still use a cane what is the difference for you??? i am getting to the point where i need support for both of my legs + im currently using 2 canes but im noticing that a lot of impact is going into my wrists and also elbows. would switching to forearm crutches help with spreading out the weight more???

Major differences (from my perspective):

Weight supported at multiple points (along he crutch & the forearm), & from higher up (above the waist): reduces the impact of gravity significantly.

Being able to let go whilst still leaning on them is huge - just light contact just below the elbow is still surpringly supportive & stabilising when standing still. - This does depend on the type of cuff you have: I have the hinged full-cuff type (I don't think the solid, half-cuff type look all that comfortable or practical, though I've never tried them. The type that you lay your full arm in look super comfy, but hard to let go of - most people I've seen using those seem to use those one at a time mostly, but maybe they give extra stability & that's enough? - Just one crutch does give a surprising amount of support, but I find for full stability I need 2 - I am very unstable, though.)

They are MUCH easier on the wrist, both due to support on the forearm taking some of the pressure off, & due to multiple contact points meaning you don't need to grip as hard (though, again, type of cuff may possibly affect this)

Because my arms are slightly flexed most of the time when using them, plus being supported just below the elbow by the cuff, I don't notice much of an impact on my elbows at all. The only time I really straighten my arms is when I'm standing still & I move my crutches into a slight A-frame shape for added stability (& sometimes in order to stretch my arms slightly to avoid them cramping from being bent too long).

The downside is, having both hands full makes it hard to carry anything (I bought a smallish backpack, which works great so long as I remember to put it on BEFORE I pick up my crutches!), but if you're already using two canes you'll be used to that, plus, I can carry a few small things, due to the aforementioned looser grip (though it makes me slightly clumsier), & a few times I've hung a bag off my crutch grip (which works, but makes the crutch much harder to control, which isn't great for stability!)

(As someone who is also a massive fall risk, & whose rollator absolutely does roll away when I fall - when I don't land on it - I don't recommend a walker/rollator. One of the reasons I switched to crutches was precisely because the rollator wasn't giving me the necessary stability

- I actually went cane, rollator, crutches; it was good for a while, but then my abilities shifted. I still use it for a little extra help transporting things from time to time, & as a portable seat for certain activities, though. -

The rollator actually made me more unstable, as I had to reach (& push) forward in order to use it, throwing my center of gravity off, whereas crutches, running parallel to my body & moving when I do, help give me a wider & more stable base - plus it's a lot easier to quickly shift/lean on a crutch when you feel yourself start to go, whereas a grab at a rollator usually just makes it swerve. I've fallen less than a handfull of times over the last few months, & whilst some of that reduction is due to other factors, before I switched to crutches I was falling several times a week - not saying it'll necesarily be the same for you, but it made a far bigger difference for me than I could've imagined).

(Also, I have severe fatigue, & need to sit over 95% of the time, but I've found that resting lightly on my crutches - sometimes with the addition of a handy wall to lean on - I can stand for a good couple of minutes, which is huge for me. )

oh this is great thank you so much!!!

may i ask where you got your crutches from? i cant use smart crutches unfortunately (i am super close to exceeding the weight limit and carry like a lot of stuff with me on a day to day basis) and have been looking at mobility+designed ones as an alternative

+ also thank you for adding on about the rollator! my other concern is that id put too much weight on it and it would like. crumble lol.

I'm glad it was useful :)

Unfortunately mine were second hand (they were my sister's first) NHS issue, so not a supplier I can point you towards! but I've definately seen people overseas with the same/a similar model (I'm making an assumption you're not from the UK since you called them forearm crutches, whereas to me they're just crutches, & the ones American (& some other countries') hospitals issue as standard are underarm crutches - sorry if I'm wrong) - searching "forearm crutches" brings up plenty of similar options though (the ones most similar-looking to mine in my search are labelled "canadian crutches" - I guess Canadian hospitals use them too!)

(Just realised I calling them full cuff may've been a little misleading - the cuff does have a small opening in front to allow the cuff to flex a little & not dig in to your arm too hard as you move)

I ended up with the bog standard type partly 'cos that's just what we had at hand, & partly 'cos I actually find them pretty versatile: because they're basic, they're pretty easy to pick up & put down (which I do a lot, since I can only use them in short bursts), plus the fact that the handle isn't a funky shape means I can turn them around & use them as a temporary cane if for some reason I can't put them on immediately but I need something to hold onto. (I also sometimes let the cuff slide up to my armpit & hang of it that way when I'm bending down to pick something up!)

The mobility designed type look great (honestly, I know everyone raves about smart crutch, but they never appealed to me, they seem awkward/a bit restrictive, though the adjustability is a plus - these I can definately see the appeal; might not be able to get them here, since it's an american company, or I'd bear them in mind for if/when I want an upgrade! - ooh, you can...) especially for prolonged use, which is quite different from the way I use mine, & I know a lot of swear by that 'platform' type for comfort & support.

Good luck finding the right pair for you :)

[Image of the back of a manual wheelchair with a sign on it reading “CAUTION DO NOT TOUCH - HOT”.]

First off, this sign is amazing and we want one. Bumper stickers for the win. Second, we are so glad you like the blog!! You are most definitely welcome!

I need one for my walker!

you ever get tired of living but in a non-suicidal way

like everything is bad everywhere and no one has money and im tired of this cycle

i tried to explain how i was feeling like this to my drug counselor and she was like "yeah that still sounds kinda suicidal" and i could not figure out how to explain that i don't wanna die, i just like. am so so so tired of the way life is for me and all my friends and family. i'm tired of living like this but i'm gonna keep doing it bc i guess there's no other choice

I don't wanna die, I wanna go lay on a warm field under the sun and watch the clouds go by. How is this hard to understand?

I don't want to die, I want to LIVE!

Hey, a fellow bendy nail haver! (Not something I see mentioned all that much - at all, actually - may be more common than I think, though?)

I used to wax (partly through sheer stubbornness) because even though it was painful, so was everything else (I have to hold my skin still when I shave, too, plus it grows back way too fast & itches while it does so, etc).

Things I found that helped (a little):

Gently stretching my skin under each wax strip as I applied it (I used ready-made ones) to minimise the amount it would be able to stretch upon removal. (This feels slightly funny, but funny is better than painful!)

Rubbing the wax on really, really, really thoroughly, so that it not only coated the hairs as completely as possible, but also really adhered itself to my skin - this seems completely counter-intuitive, but I found when I did this, rather than pulling unevenly at the skin, it removed an entire fine layer at once, seperating more easily from the layers beneath (my skin is kind of powdery & rubs off in little clumps when it's warm & moist, so its layers may come apart more easily than most people's)

Spreading/stretching the skin around the wax strip as taught as possible with my free hand before starting to remove said strip.

Accepting that it would take at least 2-3 short, sharp tugs to remove the strip (even plasters/bandaids take at least 2 goes to remove from me, & are incredibly painful, no-one has ever managed to do it in the 1 quick movement you're supposed to use, since I stretch & snap back), & planning for that brief stretch & snap back, rather than trying to remove the strip in the recommended single movement - moving my hand & re-stretching the surrounding skin as close as possible to the strip between each tug.

Making extra sure to pull the strip as close to parallel to my leg as possible (folded back along the leg, often with my fingers touching it, pulling up towards my chest, rather than yanking the strip off at the more sideways angle I tried initially).

Allowing the bleeding follicules to completely stop before applying the next strip, regardless of whether it overlapped with them or not (often I'd swap back & forth from leg to leg to allow for this, & to stop the pain in any one area building up too much).

Using tweezers to pluck the more stubborn hairs that remained after the majority of hair was gone, since I'm more accurately able to spread the skin around them.

Going slowly, strip by strip, stopping if it got too sore (sometimes it took a couple of days to finish a wax, but then it lasted up to a couple of months).

Repeating the process as soon as I had barely enough hair growth to stick to the strip - the longer the hairs, the more leverage they exert on my skin, plus they aren't always as firmly rooted when they're new

(I didn't actually wash the skin before waxing - see point about removing a little skin seeming to help spare the rest).

Hi there, fellow disabled person who can only really do computer stuff (but desperately needs to feel fulfilled in life) here;

My hands suck (chronic pain, unstable joints, giving me poor grip & mild dexterity issues, plus severe fatigue, plus semi-recently acquired intermittent temporary paralysis - yes it's weird!) But I recently found I can draw using a stylus on a tablet for (what is for me) a fairly long time, snce the almost complete lack of resistance provided by the slick screen means I can grip the stylus very lightly, & I also don't need to press down on it (I end up with a death grip on regular pens & pencils to stop them twisting out of my shifty fingers).

I also like to write, (which I find easiest to do using analogue tools, but) & find a mix of writing on my tablet (stylus again, but also smaller, lighter movements touching a touchscreen keypad than typing on a manual one) & using text to speech (plus occasionally regular typing) helps me jot my thoughts down most effectively.

My sister & I like to play games together, & the main thing we do is make worlds in sims 3, which is pretty fulfilling because not only do we enjoy the process, but every time we play with the worlds we can go "I made that" "we did a good job on this", etc, & feel proud of ourselves!

With all 3 types of activity, I find them most fulfilling when I share them with others (I have a small account for my art, another for some of my writing, plus I show my family things when I can) since the biggest downside to creating digitally is that no matter how big the file size gets it doesn't always feel like you've done anything, since there's nothing you can touch, but when you show someone else it reminds you "oh yes, I made that. I put in lots of time & effort & got a thing I can share with people".

I also like to engage with creative communities, even if I can't create myself. It doesn't always work - Sometimes I find it depressing as it reminds me I can't make a thing - but often, seeing something grow & take shape, sympathising with the trials & tribulations afforded by the creative process, being able to make suggestions if they ask for help or guidance, etc, gives me a sense of satisfaction that comes close to the satisfaction I get when making something myself - I also like to research skills & techniques I didn't know about before (& history)

Ideas gleaned from other people:

Some people use 3d modelling software instead of drawing in 2d

On top of regular printers (which can also help make digital creations become more tangible) you can also get 'cricut' machines (other brands available) that can cut out various shapes, make stickers, etc, which can help make something tangible, even if you need a hand with final assembly (I've been thinking of getting one myself) - obviously these cost, but people do spend money on their hobbies, so for some people it's a worthwhile investment (for others, it's not - 3d printers, ditto - though apparently you can make a bunch of adaptive tools using a 3d printer - think they're pretty expensive, though)

There are companies that let you make/will make stickers, tote bags, keychains, t-shirts etc, using anything from a snappy slogan made with basic text-creator, to a photograph, to a full-blown artistic masterpiece. There are other places which will let you print & bind books of your art/writing.

Other crafting games (or just games with tiers of achievments) exist - I believe minecraft lets you make all sorts of stuff - sims 3 just happens to be what my sister & I like :)

Photo or video (or gif) editing often involves creating using other people's work, which can make it feel more important than creating for just yourself sometimes does, & more tangible, since you're starting with 'raw materials', rather than just the infinite potential of a blank screen (plus it gives you the chance of a wider audience, making it easier to share with more people, whether it's the original creator whose work you helped edit, or fans of the larger work who you edited a snippet of).

Photography/videography: even though the end product is digital, you're still interacting with someone/thing that isn't. There are also many, many tools for taking photos remotely/hands free, stabilising the camera, etc, since even able-bodied photographers need these things for tricky subjects

Creating collages or fanvids or character playlists, etc, again, things to share with other people (that you also happen to enjoy) can get more fulfilling feedback, since it's easiest for people to connect to something they already know & enjoy

Digital meetups: some people play DnD, & other such games over online videocall, rather than in person, other people have (ir)regularly scheduled meetups about a whole range of topics (there's also things like discord, etc, but having a real-time face to face about a shared is a cut above)

Book/other discussion/study groups: getting together to talk about things face to face is always surprisingly rewarding (humans are social creatures, after all)

Turning silly cooking/crafting games where you 'pilot' another person (they do the making, but you have the recipe/instructions) can work for some people: it not only lets you create together, but can be very amusing, too (how much independant thought/activity they can do, how much of the instructions they know in advance, etc can be varied depending if you want a genuine thing that you made together or just a fun creative mess!)

Learning a skill/language gives you plenty of opportunities to engage & interact with other learners & test & encourage & teach, etc them (my sister met her husband online when they were learning each other's language: they were language buddies, then language, music & gaming buddies, then romantic, now married!)

Oh yes, music! whether it's using a digital music programme to create from scratch, writing tunes/lyrics, singing, remixing existing tunes, etc, there are tons of ways to make music & interact with other musicians online

Hope this gives you some ideas & you find something tangible that works for you :)

hello people who use forearm crutches who have used/sometimes still use a cane what is the difference for you??? i am getting to the point where i need support for both of my legs + im currently using 2 canes but im noticing that a lot of impact is going into my wrists and also elbows. would switching to forearm crutches help with spreading out the weight more???

Major differences (from my perspective):

Weight supported at multiple points (along he crutch & the forearm), & from higher up (above the waist): reduces the impact of gravity significantly.

Being able to let go whilst still leaning on them is huge - just light contact just below the elbow is still surpringly supportive & stabilising when standing still. - This does depend on the type of cuff you have: I have the hinged full-cuff type (I don't think the solid, half-cuff type look all that comfortable or practical, though I've never tried them. The type that you lay your full arm in look super comfy, but hard to let go of - most people I've seen using those seem to use those one at a time mostly, but maybe they give extra stability & that's enough? - Just one crutch does give a surprising amount of support, but I find for full stability I need 2 - I am very unstable, though.)

They are MUCH easier on the wrist, both due to support on the forearm taking some of the pressure off, & due to multiple contact points meaning you don't need to grip as hard (though, again, type of cuff may possibly affect this)

Because my arms are slightly flexed most of the time when using them, plus being supported just below the elbow by the cuff, I don't notice much of an impact on my elbows at all. The only time I really straighten my arms is when I'm standing still & I move my crutches into a slight A-frame shape for added stability (& sometimes in order to stretch my arms slightly to avoid them cramping from being bent too long).

The downside is, having both hands full makes it hard to carry anything (I bought a smallish backpack, which works great so long as I remember to put it on BEFORE I pick up my crutches!), but if you're already using two canes you'll be used to that, plus, I can carry a few small things, due to the aforementioned looser grip (though it makes me slightly clumsier), & a few times I've hung a bag off my crutch grip (which works, but makes the crutch much harder to control, which isn't great for stability!)

(As someone who is also a massive fall risk, & whose rollator absolutely does roll away when I fall - when I don't land on it painfully - I don't recommend a walker/rollator. One of the reasons I switched to crutches was precisely because the rollator wasn't giving me the necessary stability

- I actually went cane, rollator, crutches; it was good for a while, but then my abilities shifted. I still use it for a little extra help transporting things from time to time, & as a portable seat for certain activities, though. -

The rollator actually made me more unstable, as I had to reach (& push) forward in order to use it, throwing my center of gravity off, whereas crutches, running parallel to my body & moving when I do, help give me a wider & more stable base - plus it's a lot easier to quickly shift/lean on a crutch when you feel yourself start to go, whereas a grab at a rollator usually just makes it swerve. I've fallen less than a handfull of times over the last few months, & whilst some of that reduction is due to other factors, before I switched to crutches I was falling several times a week - not saying it'll necesarily be the same for you, but it made a far bigger difference for me than I could've imagined).

(Also, I have severe fatigue, & need to sit over 95% of the time, but I've found that resting lightly on my crutches - sometimes with the addition of a handy wall to lean on - I can stand for a good couple of minutes, which is huge for me. )

Insomnia has been brutal lately

From a 2-page information sheet, "What is postexertional malaise (PEM) & postexertional symptom exacerbation (PESE)?