Having a chronic illness just means your body is one of those finicky machines in the cartoons that never quite works as it’s supposed to, even when the mad scientist smacks the keyboard with his fist and then kicks the smoking boiler until the machine wheezes and whines and finally keeps crawling along

time to play a fun game called is it chronic pain or did i actually injure myself

Haha this game is the worst!

“Pain Delirium” in Chronic Pain Patients

[Broken up for accessibility]

It is 7:30am. I have been up since 5:00am from pain. I am very close to puking and doubling over. I am sitting upright, typing this, rocking in my chair, and kind of spacey, and I realised this is a common feeling for me but I don’t think it has a name. 

I’ve covered Chronic Illness terms before but I’ve never found a term for this concept, so I’m giving it one: 

Pain Delirium.

Not to make light of it, but in one meme,  

For a lack fo a better term, PD (ironically my initials) is when your body is in so much pain that mentally, you clock out. It’s simply too much to deal with, kind of like emotional trauma and PTSD. This is why chronic pain patients are often not taken seriously - “You’re still doing X, how much pain could you be in?”

If I fully registered my pain constantly, I would be unable to function. It is essentially an ongoing trauma to my body. 

Pain Delirium is when your brain has met your body’s breaking point.  

You’re exhausted, insufficiently medicated, and out of relief options. Your brain checks out because it can’t deal with the added stress of being in pain on top of the pain.

From my experience, PD is:

I’ve never seen this concept illustrated for spoonies, so I’m putting it out there. I really hope this helps you guys. Please reblog this for others who might need words to explain what’s happening. 

Partner has picked up on this somehow and has a few times gone and told me: “you’re in a lot of pain right now, did you realize” and I’m like “... derp... no. fluffy clouds?” and having an outside person pick up on this is SUPER helpful. this is a great description, thanks OP!

A clinician I saw recently said something that really struck a chord with me, and I feel like a lot of other disabled people could do with hearing it. 

When he asked me what I did with my days at the moment, I explained the current situation (which is that I’m unemployed, out of education, and mostly housebound), and told him that I really wasn’t busy at all. I tried to play it off as a joke, like I always do, but he seemed to take it seriously. 

He said: “It sounds to me like you’re very busy, you’re just busy taking care of things that most people don’t have to worry about.” 

And that’s true. I don’t really get to think about it like that, because I’ve been told over and over again by people in my life that I just need to “try harder, do more, be busy” until everything just sort of… works itself out. But I am busy - I have to keep myself distracted to deal with psychotic symptoms that I currently don’t have any medication for, I have to spend a lot of time resting so I’m not in as much pain and have the energy to do what I need to do, it takes me significantly longer (and more effort) to do basic self-care tasks and chores… The list goes on. 

So if anyone’s out there in a similar situation to me, feeling like you’re not really doing anything, remember that you are, it’s just not what abled people would consider “activity”. And I understand that it’s boring and isolating and downright miserable a lot of the time, and no one should have to put up with this permanently, but stick with it, and know that you’re busy, and you’re doing good.

Here in the UK they talk a lot about carers (people who care for children, the elderly, or people with chronic illness/disability), and forms will often ask if you have any “caring responsibilities” [i.e. people you are responsible for caring for].

I always want to put “me” - I probably spend 20 hours a week taking care of myself above and beyond the basics (sleep, housework, cooking, etc).

But that doesn’t seem to be a supported operation (I get it in some ways, since the idea is to provide support for folks who are under particular pressures due to being a carer) and that’s a shame, because my time and effort spent caring for myself should be acknowledged just as we’d acknowledge someone who cared for me.

Hey this is possibly the best response I’ve gotten to this post. I also live in the UK and have noticed a trend to seem to want to care more for disabled people’s carers than the disabled people themselves - not that carers don’t need and deserve support, because they absolutely do. But I hadn’t really thought about the idea of being your own carer, and that absolutely applies to me too. Making my life even somewhat accessible for myself is, essentially, a full-time occupation.

You are 100% your own carer and the impact of that on you and your time and effort should be acknowledged, 100%.

I got asked by my psychiatrist (twice) if I had a carer and I was like “closest thing is my partner only he lives 4800 miles away, I have a close friend in London who has helped with surgery recovery but I’m an hour from London” and honestly he was a bit shocked! Sure I can get by on my own (although it’s becoming increasingly obvious that this is only somewhat true) but that takes a crapton of time and energy that other people don’t have to spend, and it’s a bloody pain.

Decided to stick with a typical AW for the 50th comic. Maybe I’ll do something more celebratory for the 100th XD

Ko-Fi | Commissions | DeviantART | Tumblr Art Tag Aces Wild | Puzzle Peaches | Under Normal Circumstances

“Don’t let your disease control your life!!!”

Bitch. Do you think I don’t try?

Since February, when I started showing symptoms, I have tried to balance Crohn’s Disease and having a fun life. Especially since I’m 24 and these are supposed to be the “good old days.” But every time I try, Crohn’s throws a wrench in my plans.

Want to go see a movie? You’re in a flare-up and can’t go two hours without running to the bathroom, so good luck with that.

Want to hang out with friends? You’re always too sick to go anywhere and now you’re depressed that you’re sick so you don’t even want to go anywhere.

Want to go to an event you’ve been looking forward to all year? Here’s an unexpected rash on your leg that makes it too painful to walk. Also, you maxed out all your spoons for the week.

Want to travel and see your long-distance significant other who you haven’t seen in a bloody motherfucking year? You have to push your trip back because of an unexpected doctor’s appointment.

Want to get an apartment and finally move out of your parents’ house? You have enough money to pay doctor bills or rent but not both.

We are fucking trying to live full, enjoyable lives despite our diseases. I think I speak for every chronically ill person ever when I say I want to do more with my life than just be sick and bitchy all the time. But it’s almost as if this disease affects every aspect of my life and tends to make things complicated at the worst possible times!

THIS.

A clinician I saw recently said something that really struck a chord with me, and I feel like a lot of other disabled people could do with hearing it. 

When he asked me what I did with my days at the moment, I explained the current situation (which is that I’m unemployed, out of education, and mostly housebound), and told him that I really wasn’t busy at all. I tried to play it off as a joke, like I always do, but he seemed to take it seriously. 

He said: “It sounds to me like you’re very busy, you’re just busy taking care of things that most people don’t have to worry about.” 

And that’s true. I don’t really get to think about it like that, because I’ve been told over and over again by people in my life that I just need to “try harder, do more, be busy” until everything just sort of… works itself out. But I am busy - I have to keep myself distracted to deal with psychotic symptoms that I currently don’t have any medication for, I have to spend a lot of time resting so I’m not in as much pain and have the energy to do what I need to do, it takes me significantly longer (and more effort) to do basic self-care tasks and chores… The list goes on. 

So if anyone’s out there in a similar situation to me, feeling like you’re not really doing anything, remember that you are, it’s just not what abled people would consider “activity”. And I understand that it’s boring and isolating and downright miserable a lot of the time, and no one should have to put up with this permanently, but stick with it, and know that you’re busy, and you’re doing good.

Here in the UK they talk a lot about carers (people who care for children, the elderly, or people with chronic illness/disability), and forms will often ask if you have any “caring responsibilities” [i.e. people you are responsible for caring for].

I always want to put “me” - I probably spend 20 hours a week taking care of myself above and beyond the basics (sleep, housework, cooking, etc).

But that doesn’t seem to be a supported operation (I get it in some ways, since the idea is to provide support for folks who are under particular pressures due to being a carer) and that’s a shame, because my time and effort spent caring for myself should be acknowledged just as we’d acknowledge someone who cared for me.

‪Developing Dysautonomia is like switching from an automatic to a manual car. Except the clutch is made of medication, and the gearshift is controlled by doctors. And also, someone switched up all the wiring so the turn signal actually turns on the radio, and the A/C operates the windshield wipers, and the brake pads wore out a long time ago.

Dependency does not equal addiction.

My mom has to take thyroid medication and will have to take it for the rest of her life.  Because her body will not function without it.

That is not addiction, that is dependency.

I am on Lyrica for my Fibro.  If I stop taking it for even 24 hours, I will experience massive withdrawals that could cause seizures and even death.  (And I’ve had to go off it suddenly 3 different times.  Thanks USA HEALTHCARE!)

That is not addiction, that is dependency.

If you take your pills as prescribed, you are not an addict.  Most medications cause withdrawals when you stop taking them because your body has become dependent on them to function normally.  That also doesn’t make you an addict.

If you can’t understand the distinction, refrain from speaking about it until you do.  Or at least don’t do it around me.

The Great Smudge - Table Cat

Via Lancelot Falk

Anus tart, I can’t breathe…

Me the cat always

The cat’s right though

Okay but seriously. With my mild dyslexia I see everything the cat sees except for a few differences like

“HoMEE home”

“Mario 10”

“Don’t matter, give up”

“Anus Start”

“Is Ed”

Every time me or my friend with dyslexia see one of these we send them to each other to find out what the other one sees.

I am 100% the cat 100% of the time.

First Time Walking-Stick/Cane Users Tips

I’ve seen a post about first time wheelchair users guide. Since I’ve been using a walking stick for a while now, I thought I’d make one specifically for these types of aids. These will be in no particular order– they’re just things you probably don’t know about using a walking stick.

- if you’ve hurt you left leg/ect., hold the stick in your right hand (if possible) and if you’ve hurt your right leg/ect., hold the stick in your left hand. Trust me, your shoulders and back will thank you

- the pad of your hand will hurt– it just will. You’ll get used to it and your hand will develop more protection there eventually. To start out, look into a pair of fingerless gloves. 

- a fold up/collapsable stick is good for beginners because you can take them on public transport/cars without too much hassle (they also fit nicely into desks and under chairs).

- When you’re using your stick, you only have one free hand. This may seem obvious, but it really impacts your every day life. Practice for a while around the house, so you get the feeling down.

-there are a lot of different types of walking sticks: fold up, one leg, two legs, three legs, etc. 

(these are only a few of the many designs)

-if possible, go to a shop that specifies in walking sticks. ask to try a few out, they will also help make sure that you’re using on that’s the right height for you.

- a height adjustable walking stick is a miracle, especially if you want to wear high heels to an event.

- you don’t need a prescription to get a stick in most regions (but in some cases they may help get a discount)

- getting a stick that is the right height for you if very important (even with an adjustable one). Too short, and you’ll hurt your shoulder. Too tall, and you can’t put weight on it properly. The correct height is when the highest part of the handle reaches your wrist when the stick is standing straight up, as shown in this image.

- if you’re young (under the age of 60) people will stare, often they wont mean to– it is annoying but you’ll get used to it. 

- again, if you’re young, people will ask why you’re using the stick, all. the. time. Even strangers will sometimes ask. You can use a really simple answer like “medical condition” and if they pry further, you can say “That’s all I’m comfortable saying”. If they don’t know you, or don’t know you well, they really have no business asking.

-Children will ask, a lot. Please be gentle with them, especially if they’re really little. I know it’s annoying but you can give children reallllllllly simple answers like “I just need it to help me walk” and most of the time they’ll be perfectly content with that and won’t ask more.

- don’t be afraid to use more advanced mobility aids if needed on bad days, or when readily available (eg. at a supermarket, when they have motorized wheelchairs for customers)

- You don’t have to use your stick every day for you to have a disability or for you to own a stick. Even if you need it once a week, once a month, you can still own one. You’re not less worthy or a mobility aid than those who need one everyday. 

-Use backpacks, the ones with 2 well-padded straps that go over your shoulders evenly. Use them as much as you can. Bags that you hold in one hand or have one strap make you unbalanced or take up your only free hand. 

- If you want to, decorate your stick, go all out. 

Even if you don’t need/use a walking stick, please reblog this to let those who do, know this information. 

As a part-time to full-time cane and crutch user, this is great information.

Bonus tip: you want the long part of the cane to be directly under your arm if possible so the weight is transferring properly. If you have a cane whose top branch/arm isn’t centered over the long part of the cane, try flipping it backwards - it will help with weight transfer and hurt less in the long run.

For sizing, if you have Ehlers-Danlos Syndrome or another hypermobility condition, make sure your arm is slightly bent when measuring to the crease of the wrist. We have a tendency to hyperextend the elbow, which lengthens the arm and will lead to a slightly wrong cane length!

This is humanity put to good use. Screw all the stuff that’s happening these days, this is basically the only reason I like us stupid ape people. Little things like this, designed to keep us all happy and busy

i love this!!!

Now this is good design. Pay attention, tech companies - it’s not about looking shiny, it’s about understanding the end user’s needs and working with them.

Or my body will just pick it regardless of whether I have already picked a day to relax.

[imgdesc: tweet from @foyinog [displayname foyin] quoting “if you don’t pick a day to relax your body will pick it for you”]

self care for when you hit rock bottom

i fucking hate self care posts made by neurotypicals so here’s one from someone who Actually Gets It

-can’t shower or take a bath? me either. dry shampoo can make your hair look and feel cleaner, and baby wipes or makeup wipes work great to get the top layer of grime off your skin.

-can’t wash your sheets and make your bed? i feel you. push your blankets out of the way and shake the crumbs off your sheet. it will at least be a bit more comfortable.

-can’t even change out of your dirty pajamas? been there. hit yourself with some febreeze and a lint roller. if you can, brush your hair. if you can’t, hair ties and bobby pins are fantastic.

-can’t make anything to eat? same. if you can, there’s no shame in ordering food. in fact, it’s probably better you eat something rather than go hungry. if you can’t, try and find something that comes pre-made or takes minimal effort to make. at the very least, drink some water.

can’t respond to messages or reach out for help? yeah, i get that. set an alarm for a few hours from now and respond to any messages you need to once you’ve given yourself time to prepare. if they’re Important Messages that need Professional Responses, you can find fill-in-the-blank format rough drafts on google. as far as personal messages go, don’t feel bad for sending a mass “I’m sorry, I’m in a personal emergency right now. I’ll get back to you as soon as I can.” response to everyone.

-can’t even sleep because it’s so bad? asmr videos always knock me out, personally, but i also watch a lot of bob ross. just try to find something quiet and soothing to use as background noise and take your mind off it, or at least give you a more peaceful environment to think about it.

-can’t go for a walk/drive? try opening the blinds or curtains. you’re still exposing yourself to the outside world. baby steps. (i also play animal crossing or sims; it may be virtual but fuck it. i went on a walk.)

-can’t go into work/school? let people know. let your coworkers or classmates know it’s an emergency and you can’t make it. give yourself up to two days, but then you have to go back. ask to have your work emailed to you so you know what you missed.

-can’t brush your teeth and wash your face? makeup or baby wipes and gum or mouthwash. don’t let yourself physically rot bc you’re rotting emotionally.

-remember that you’ve been here before. if you survived then you can survive now. that’s what this is about- survival. you don’t have to be living your Best Life. right now, it’s more than enough that you’re alive.

This is really good.

This, this is key. As my GP once said when I was really ill:

(1) eat some calories

(2) if that works for a while think about fat/protein/carbs

(3) if that works for a while we can talk about fruit/veggies

Like - if you can’t do the Thing, there are options out there.

going places with a cane is like *switches the side the cane is on to hold something* *sits down* *cane falls over* *stands up* *sits down* *cane falls over* *switches cane side* *sits down* *cane falls over*

This, except rather than switching sides to hold things, I switch sides depending on which body part hurts more in the moment.

Things You Shouldn’t Say to Chronically ill/Disabled People

Don’t Ask “Are You STILL Not Well?” Our conditions are ‘chronic’ This means they are possibly never going to heal. After a few years you should catch on to this

Don’t Tell Us About Your Miracle Cure Yes we know about magnesium, crystals, epsom salts, and yoga. We are eating a balanced diet, we might even meditate regularly. The fact that we are still ill doesn’t mean we haven’t tried it. The fact that we haven’t chased after every suggestion doesn’t mean that is the one thing keeping us unhealthy… we get a LOT of these. A LOT

Don’t Get Angry When We Say We’ve Tried Everything You Think Of  We are not dismissing you and your value. We are not being smarmy or trying to throw a pity party for ourselves. We have been researching this condition for years now. Don’t feel so shocked that we’ve already considered every idea you’ve come up with in 5 minutes!

Don’t Tell Us About How Weak Our Generation is and How Back In Your Day You Just Fought Forward and Pretended it Wasn’t There 1) You are NOT chronically ill. Your problems and my ‘problems’ are my ‘normal’ 2) Is being stupid and self destructive really something worth bragging about or emulating?

Don’t Tell us About Your Aunt’s Cousin’s Nephew’s Friend Who Has Our Condition and Still Does The Things We Don’t These conditions have a VERY broad range to them. Some people will have them and live totally normal lives. Some people will struggle with them. Some people will consider even what I do amazing freedom and strength. The fact that the people you know who have this condition are doing things is probably because they are the only ones who are able to be in the places you go. Trust me, I’ve read the statistics. Majority of us are not able to do what we are not able to do.

Don’t Ask Us When We Are Going to Get Past This or be Done Making a Big Deal About This Believe me, it is a full time job as a chronically ill/chronically injured person to not blame ourselves. We don’t need you reminding us what a burden we’re being or telling us we could totally get past this if we just tried. We are trying. And we do get that you’re tired of worrying about our issues. We are too. But unlike you, you can walk away and not notice it anymore. We have to live with this every waking minute. We can’t run away from this because this is us. This is our reality

Ways You SHOULD Talk To Chronically ill/Chronically Injured People

Just Talk to Us Seriously. Just have a light conversation with us. It is stinking lonely going through this and we are always thankful for a distraction. Talk to us about what interests you. Talk to us about if you think whales burp through their blowholes. Talk to us about anything!

If We Can’t Stand Then Sit To Talk to Us This isn’t a demand, but if you want to put us more at ease, it really does help. It is something I myself didn’t realize until I lost my ability to stand for long periods of time. People like to stand while talking. More to the point, they like to stand FAR away from anything you can sit on. Even if you are sitting, people like to stand to talk to you, and trust me. It is both daunting and kind of awkward talking to people’s crotches as they tower over you. If we are sitting down, it doesn’t mean you need to walk away because we are done talking to you. It means we needed to sit down. Sit down with us. It’s relaxing. We’ll talk for hours not distracted so much by our increasing pain and trying to awkwardly stand as long as we are sitting.

Talk About Things Other Than How Hard Our Lives Must Be It’s not like we are completely against it. I notice other people walking with cool looking canes and want to ask them where they got them (cane envy as I like to call it). This is a huge part of our lives and we can’t avoid talking about it entirely because it does take up our schedules, choices, and more. But we are more than our suffering as well. We like to talk about movies, games, books, some even like to talk about sports! I mean there’s a whole Paralympics  thing! (Though not me… Don’t talk to me about sports. I’ll have literally no idea what on earth you’re talking about)

Roll With It If you ask if we want to go to a museum with you, and we reply “Oh I’d love to, unfortunately I can’t stand that long.” or “Unfortunately I get my nerve blocks at that time so I’ll be out of it for the day.” Don’t solemnly go “Oh….” and then sit their awkwardly thinking how you just ruined the mood. The fact that we casually mentioned something like that usually means we are feeling comfortable with you. To us this isn’t a trigger point, it is literally just our weekly schedule. It’s almost the same as saying “Oh I can’t, I play golf Saturday mornings!” Just suggest another date. Or another activity. Ask us if we have anything you might like to try. Just keep the conversation going!

Basically… Just Treat Us Like Friends We have to deal with stuff you may not understand. We may have to make accommodations you don’t think of. But we are still people. We don’t expect you to know everything we go through, or have the cure we haven’t thought of… We just want someone to connect with and have a pleasant conversation with! Just be you!