Chronic Illness Problems

I'm Jenna, 24, and I have hEDS and way too many things that go along with that. This blog tries to be a good combination of humor, resources, things I write, things I reblog, and things that go on in my medical life. I also love answering questions! I'm certainly not a medical professional, but I do a fair amount of research and can give you advice from the research I've done over the years, or from my experiences. Specify if you don't want me to publish something, or feel free to send me a message instead of an ask!   About   Ask   FAQ   Answered Asks   Resources   Chronic Illness Problems   Archive   Donate

[chronicillnessproblems]

finally figured out how to long back into this blog my one and only flagged post is this from 2012, is my stomach showing too much skin there for tumblr or is tumblr just against elastic skin?

[theintrovertnation]

[7th-seraph]

what if every Tumblr user suddenly looses their mouse?

[bardofspades]

J = Next Post K = Previous Post L = Like N = View Notes Space = Show Photo Shift + R = Reblog Shift + E = Add to Queue Z + Tab = Switch Blogs

[itsblueandboxy]

[tyleroakley]

THIS CHANGES EVERYTHING.

[starkstrider]

I just reblogged this with the command, shit

[enjolrasjosette]

Do you know how much this helps people who have trouble with the mouse? (Me, other disabled people) thank you

[femmecrip-deactivated20151212]

Yup, I use these when my hands get particularly weak (like now)

[chronicillnessproblems]

[[Image description: over a grey background, the post reads in large black text: “MY DOCTOR RECENTLY ASKED ME HOW MANY “USABLE HOURS” I HAVE IN A DAY.” Below that, in smaller text, “She told me that a healthy person has, on average, around 10 “usable hours” a day. These hours can be spent going to work, getting errands done, and fulfilling other responsibilities. We realized that, on a good day, I have around 4 “usable hours” with lots of rest in between.

—

This really hit home for me because, despite knowing better, I still try to keep up with healthy people. I try to squeeze their 10 hours of socially-acceptable responsibilities into my 4 hours each day. The equivalent would be if a healthy person tried to fit 25 hours of responsibilities into their 10 usable hours a day. It also made me understand why I felt like time was slipping me by so quickly; because a healthy person has approximately 6 more usable hours a day than me, 42 more a week, and 186 more a month.”

Below this in the lefthand corner is a black box captioned with @strongerthanpots.]]

I saw this on Facebook and I LOVE it. I think I’m going to start using this, because telling my doctors how many hours I manage to be awake (6-8 hours usually but sometimes less) is not really getting across to them how incredibly fatigued I really am.

They hear I can live alone and manage school part-time (even if it is all online,) so they assume I’m doing okay. It doesn’t matter that sure, I SURVIVE living alone, but some days it’s borderline dangerous, like when I can’t eat or get to my meds, aside from the fact that living alone and being this fatigued means that I never eat meals that take more that 5 minutes to make, my floors haven’t been vacuumed in a month, and my clothes do get cleaned, but then live in the dryer or the laundry basket until I wear them and throw them back in the washer, and they never make it to the drawers because that’s too much energy on a task that’s technically not necessary.

But my usable hours per day are like, maybe 5 on a really good day, and school takes ALL OF THEM. Some days I only manage to feed myself and my pets, which is about 2 usable hours. No wonder I’m always behind.

[snouted]

At my worst I can maybe stand or walk or do a light task for 20 min at a time every few hours. I can handle may be 2-4 hrs total of socializing (including cumulative at work) a day if I rest up for it. Essentially nothing after work except maybe acupuncture or therapy once a week, and I need at least one weekend day off (usually Sunday). I have my groceries delivered and I don’t walk more than a few blocks at a time (UberPool is my friend).

[gluttonousgoddess]

Your doctor is basing their info on extroverts, and failed to account for introverts, who, while using less time, are still healthy, excluding any other influences. Speaking of which, your doctor also ignored other outside factors.

10 hours a day my ass.

[chronicillnessproblems]

What the fuck, pray tell, do you think introversion has to do with evaluating the effects of disability on day to day life?

Do I need a disclaimer on all my posts or something? This is a CHRONIC ILLNESS BLOG, people, the vast majority of posts are CHRONIC ILLNESS AND DISABILITY RELATED! Take your abled nonsense elsewhere or, preferably, nowhere at all.

[chronicillnessproblems]

I'm sorry, I don't really understand the "usable hours" post, could you help me understand? Why would someone only have 10 usable hours if those hours include work? Like if you work a 9-5, that's 8 of your 10 usable hours. Does that mean you go to sleep 2 hours after getting off work so that you can get 14 hours of sleep? I've never heard of someone needing 14 hours of sleep every day. Is there something I'm not getting as to why someone would only have 10, or even 6-8 usable hours a day?

Ok well, this is a spoonie blog, so by saying “I’ve never heard of someone needing 14 hours of sleep” I’m not sure if you’re missing where I said in my comments on the post that I often sleep 16+ hours a day, because I am disabled, have many illnesses making me fatigued in ways no one can figure out how to explain let alone fix, and so I’m thinking you might not be understanding the disability aspect of this, in which case I’d encourage you to read the original Spoon Theory which is still the best quick link for that I have. If you’re actually just questioning healthy people needing 14 hours of sleep, I think that you’re right, and the 10 hours is probably just a number being thrown around, and it’s too low, since many people work more than that especially when you add in commuting. Based on my dad who is the abled person I know best, I’d say the average abled person has a lot more usable hours a day. He probably works about 10 hours, also cooks and has time for cleaning and personal hygiene, and sometimes has a social life during the week as well. He’ll spend some time relaxing, but I’d say he spends 8 hrs a night sleeping max, and his time spent otherwise recovering/relaxing is only about 2 hours, which leaves him with 14 productive, “usable” hours most days. (In the doctor’s defense, maybe they were not counting things like basic cooking/eating and personal hygiene towards usable hours. Work 8 hrs + commute 1 hr + 1 hr for phone calls/errands/cleaning is still low, but not entirely unreasonable.)Whereas for example yesterday I slept about 15 hours, spent about 1 hour on personal hygiene, 1 hour feeding/caring for my pets, 2 hours working on schoolwork, 1 hour talking to friends online, maybe 30 minutes cooking my own food, and needed the other 3.5 hours resting or recovering between doing those things, meaning my “usable” hours were only 5.5 (and that’s if you count the chatting online as “usable.”)

But the general concept still stands- that it is useful to have a way for explaining to doctors/abled people that we may exist during the same 24 hours a day they do, but we need to sleep and recover more than the average person so we’re only productive in a small number of those hours compared to what a non-disabled person can do. Maybe thinking in terms of “productive hours” would be more helpful for you than “usable?”

[chronicillnessproblems]

[[Image description: over a grey background, the post reads in large black text: “MY DOCTOR RECENTLY ASKED ME HOW MANY “USABLE HOURS” I HAVE IN A DAY.” Below that, in smaller text, “She told me that a healthy person has, on average, around 10 “usable hours” a day. These hours can be spent going to work, getting errands done, and fulfilling other responsibilities. We realized that, on a good day, I have around 4 “usable hours” with lots of rest in between.

---

This really hit home for me because, despite knowing better, I still try to keep up with healthy people. I try to squeeze their 10 hours of socially-acceptable responsibilities into my 4 hours each day. The equivalent would be if a healthy person tried to fit 25 hours of responsibilities into their 10 usable hours a day. It also made me understand why I felt like time was slipping me by so quickly; because a healthy person has approximately 6 more usable hours a day than me, 42 more a week, and 186 more a month.”

Below this in the lefthand corner is a black box captioned with @strongerthanpots.]]

I saw this on Facebook and I LOVE it. I think I’m going to start using this, because telling my doctors how many hours I manage to be awake (6-8 hours usually but sometimes less) is not really getting across to them how incredibly fatigued I really am.

They hear I can live alone and manage school part-time (even if it is all online,) so they assume I’m doing okay. It doesn’t matter that sure, I SURVIVE living alone, but some days it’s borderline dangerous, like when I can’t eat or get to my meds, aside from the fact that living alone and being this fatigued means that I never eat meals that take more that 5 minutes to make, my floors haven’t been vacuumed in a month, and my clothes do get cleaned, but then live in the dryer or the laundry basket until I wear them and throw them back in the washer, and they never make it to the drawers because that’s too much energy on a task that’s technically not necessary.

But my usable hours per day are like, maybe 5 on a really good day, and school takes ALL OF THEM. Some days I only manage to feed myself and my pets, which is about 2 usable hours. No wonder I’m always behind.

[squibney]

My little sister is 11 and she likes to come into my room a lot and hang out with me, but sometimes when she comes in I’m in an introverted or depressed mood and don’t want to talk to anyone. Tonight she came in and said that my room was too quiet, so I told her to go listen to music or something because I didn’t really feel like talking. She sat there quietly for a couple of seconds and then she said, “I’m gonna tell you what happened in gym class today because it was really annoying, but you don’t have to talk back.” And she just started talking about her day to me and I don’t think enough people understand how helpful that is to someone who’s depressed. To be there with them and talk to them without expecting them to engage in conversation. It’s a way to be alone without feeling completely lonely and I think everyone who deals with depression or any other mental illness needs someone like my sister to understand that, and to interact with the people they care about based on their state of mind.

[sizvideos]

A man has built Ogo, a hands-free wheelchair for his paraplegic friend (video)

[teratomarty]

In addition to being a much more practical use of Segway tech, this thing also looks as nifty as a wheelchair ought to. Most of them look like they were designed by the Soviet Bureau of Things That Are No Fucking Fun.

[chronicillnessproblems]

Okay I’m going to reblog this in case the technology is interesting or helpful for some people but…

did I just read with my own two eyes, on a post about technology for disabled people, which should be being marketed to disabled people, the god awful sentence “disabled people are exactly the same as you and me,” which strikes me as gross for reasons I can’t quite articulate tonight while also proving that even OUR OWN FUCKING STUFF has to be neatly packaged with some inspo and Abled Saviors, and advertised to The Ableds instead, because heaven forbid disability technology is geared towards, I don’t know disabled people?!

[fancyfade]

I am going to agree with you that is skeevy as fuck. The way it is phrased makes it seem like it’s not really directed at disabled people. especially since none of the pros in the gif set were mentioned as things disabled people liked - the only thing they mentioned someone else liking was the core muscles used being something occupational therapists approved of, not the people who would be sitting in them all day.

Like it seems like it’d be fun to roll around in, but the marketing is pure inspo porn.

(also side notes on the practicality: a bit concerned what you’d do if you like… needed to lean over to reach something, or were having a long day and couldn’t sit up straight very well - like I’ve legit fallen out of my WC b/c tiredness before; that would be times 1000 here. like would work if you have really good core muscles but…. definitely not for everyone)

[image: a series of gifs showing Kevin (a bald white guy in jeans and a long sleeve black shirt) sitting down in  an Ogo,a wheelchair that has eh same shape as a manual wheelchair, but no handrims or caster wheels. first Gif he says “Hi, I’m Kevin and this is the ogo” second gif, we see someone transferring from a manual wheelchair to the ogo. The text Kevin is saying is “A good friend of mine, Marcus, has been paraplegic for many years. He still seems to struggle with everyday activities that you and me take for granted.” Now we see Kevin walking around in a workshop, lifting the Ogo off a table. the text here is "So I started to work on a concept idea that I had with the help of Marcus, a segway and a couple other people.”

We see Kevin on a white background, leaning forwards and going forwards, and then leaning back and going back, in the Ogo. He says "The key feature to the ogo is the acting moving seat control.” next gif he continues leaning around in the ogo, sometimes leaning one direction to turn that direction. The dialogue is “You can use it completely hand free simply by leaning in the direction you want to travel.”

Then he touches his stomach. text here is “most importantly, you’re using your core muscles all the time and that’s got the occupational therapists very excited.” next gif we see the guy who had transferred from a manual wheelchair, Marcus, rolling around on the Ogo in a gymnasium. He is dribbling a basket ball and then shooting it through a hoop. this gif is captioned “the disabled are exactly the same as you and me, they all need freedom and excitement.” next gif shows someone zooming through the gym quickly in the ogo, and is captioned with “and Ogo takes it to a whole new level.” end image]

[chronicillnessproblems]

Reblogging for the commentary and also the image descriptions, thank you!! You’re right it is super impractical... how do you grocery shop with this chair if it runs into shelves whenever you reach for items on them? I wonder if you can turn the sensor off somehow to make it stationary while leaning over to get something? If you can’t turn it off I’d imagine that chair is pretty useless for anything except the wheelchair sports he’s doing in the video.

Either way, it’s already not helpful for people with all sorts of disabilities that wouldn’t allow that kind of muscular control or use, especially throughout a whole day. That’s why regular wheelchair companies have options for different types of controls already (I have a regular stick operated power chair, but I know they offered me different options.) I couldn’t even use my arms to push myself in a manual chair all day because of fatigue, so I don’t think moving using my core would lessen my fatigue much. Also, what about people with spasms or similar lack of control? Would they just be switching direction by accident all the time? It annoys me so much that this kind of thing is advertised in neatly packaged inspo like they’ve “solved wheelchairs,” while it’s actually not even useful for many, probably most, wheelchair users. (Also as @bittersnurr pointed out, this post is 3 years old, the chair can’t really be purchased, and if it could it’d still cost $17,000...)

[sizvideos]

A man has built Ogo, a hands-free wheelchair for his paraplegic friend (video)

[teratomarty]

In addition to being a much more practical use of Segway tech, this thing also looks as nifty as a wheelchair ought to. Most of them look like they were designed by the Soviet Bureau of Things That Are No Fucking Fun.

[chronicillnessproblems]

Okay I’m going to reblog this in case the technology is interesting or helpful for some people but...

did I just read with my own two eyes, on a post about technology for disabled people, which should be being marketed to disabled people, the god awful sentence “disabled people are exactly the same as you and me,” which strikes me as gross for reasons I can’t quite articulate tonight while also proving that even OUR OWN FUCKING STUFF has to be neatly packaged with some inspo and Abled Saviors, and advertised to The Ableds instead, because heaven forbid disability technology is geared towards, I don’t know disabled people?!

[chronicillnessproblems]

I started playing the Hogwarts Mystery game yesterday and learned how ridiculous it is as a game, but omg it is FANTASTIC as a spoonie metaphor!

So basically you have “energy,” and almost everything you do in the game takes energy. I think sometimes you can talk to people without energy, but learning spells or potions is a lot of clicking, and every time you click it takes 1 energy. So far at least, you click anywhere from 1-5 times to do things like, “pay attention,” “demonstrate,” “read book,” etc. and there can be dozens of those per lesson. So 25 energy points, recharging completely every 100 minutes, does NOT GET YOU FAR.

It’s the games way of trying to get you to spend a ton of money on energy in order to get through the game in a reasonable amount of time, but it’s so badly done and is just BEYOND ANNOYING because you run out of energy SO FAST. Read a page, listen to the professor, get halfway through trying to add a potion ingredient, and now you have to wait 4 minutes every time you want to try to do anything else, because you’d need to buy SO much energy.

Reviews have criticized this system as making the game “borderline unplayable,” which is true, but I feel like I’m now going to use this as my new Spoon Theory to explain how spoonie life can be “borderline unlivable.” (Unlivable sounds hash, but I don’t mean not worth living, just how hard it is to be supposed to “keep up” with people who DON’T have to recharge their energy for 4 minutes in order to do anything.)

BECAUSE THAT’S EXACTLY WHAT LIFE AS A SPOONIE IS LIKE!! Read half an assignment, need a nap. Ask questions, concentrate, make progress on learning something, need a loooong break to recharge. Except there’s no option to buy energy in real life, maybe you can lose it slower if you have certain resources, but mostly you’re just stuck recovering for probably way longer than you are able to spend actually doing things.

[justsomeantifas]

them: listen the government and big pharma are drugging up the people over medicating them not letting them be themselves the entire structure of capitalism is about drugging people into submission maybe we should just fuck a tree instead

real life for real life people:

[justsomeantifas]

[roguecampingrainstorm]

I didn’t think you could die from a TOOTHACHE

[justsomeantifas]

oh yeah, if a tooth gets infected bad enough your body can go into septic shock due to it. https://www.sepsis.org/sepsis-and/dental-health/ more info on that.

[punkpxssybabe]

Haha just when I thought my anxiety was gunna be fine *has half a tooth thats constantly infected and cant afford to pull it out*

[justsomeantifas]

this is serious, get a quote and i will help you make a donations post for this. we can help you get this tooth pulled to save you some very serious health risks 

[just-call-me-ella]

Yeah, uh, I went into sepsis and they almost transferred me hospitals to get me to infectious disease faster - because they had no idea what was causing the sepsis and my antiobiotics weren’t working fast enough. They were concerned the infection had reached my heart.

It turned out to be an infected tooth. (That I didn’t notice because it happened after having my wisdom teeth pulled, and we assumed the pain was referred from the surgery)

Seriously, crowdfund, call local dentists, look for low cost clinics - they have dental clinics that will pull teeth like this for low cost. The one I went to was $10 each appointment to see the dentists. Call dental schools, local universities. Hell, call your library and ask if they’d have any ideas. The only way to treat an infected tooth is removal or root canal, and infection is..incredibly serious. Trust me, without medical intervention I would’ve died.

[sarahconnorjr]

It's 2018

The Americans With Disabilities Act (ADA) was just reformed so that disabled people can’t sue public businesses for discrimination because it would be discrimination against that business.

50% of all US murder victims by police officers are disabled

Bathrooms, entryways, seating, parking, and other public spaces are segregated for disabled people

Disabled children are required to go to segregated schools

Disabled people can't…

Get married without losing their health insurance which is a death sentence

Have savings accounts

Have more than $2000 at any given time

Own or inherent property

Own jewelry worth more than $100 or other items worth more than $500 without reporting them to the government

It is legal for a parent to murder a disabled child if they consider that child an undue burden

This is an extremely short list of things you are leaving out of your social justice

NTABs okay to reblog

[respectfulmemes]

[mentalkillness]

I feel like a mom on facebook reblogging this but I genuinely like it. I want to make this into a full size poster and put it in my 3rd grade classroom but I’m 20 yrs old and not a teacher

[cliffordmemes77-blog]

[slimdaddymbaku]

American healthcare system be like

[tubacondom]

I️ fucking hate this

[uuddlrlrba-start]

definitely made by a non-american with VERY little understanding of our healthcare system

there, I fixed it

[big-gay-bird]

More like 

[marius7th]

I’m crying at the corrections done to it.

[bigfatscience]

did I do it right?

[chronicillnessproblems]

It’s always ironic when there’s a med at the pharmacy that I have to pick up but I can’t pick it up because I’m too sick to get to the pharmacy without the med.

[thefibrodiaries]

The amount you ableds care about disability issues really only goes as far as ‘who’s faking for government support’ huh

[sunflower-cane]

disability benefits, and the excuse of "weeding out the fakes"

Its hard for disabled people to get disability benefits, no doubt, and were always told its to “weed out the liars who pretend to be disabled”

All theyre saying, is that they want disabled people to pay the price for abled people who lie to get something they dont need.

Now, when i first heard that excuse i wasnt taken aback by it,

I mean, abled people? Feeling entitled to something specifically meant for disabled people? To the point where disabled people cant get it anymore? That just sounds like another day that ends in “y”.

But i am frustrated with this constant excuse, and why am i?

Because the answer to weeding out the liars isnt to make it ten times as hard to get disability benefits, its to teach abled people that those benefits ARE NOT THEIRS, if one person needs a drink and the other person is stealing drinks, the answer isnt to make it near impossible to get drinks, its to stop the person stealing drinks. Its to teach that person not to steal. And yes, there will always be thieves, you cant stop them all, but these are the LIVES of disabled people that youre messing with, not giving them what they need can KILL them.

*opinion here* Id rather have one or two abled people be ableist and take what isnt theirs, ya know, like they do with our parking spots and elevators and bathrooms, than have it be ten times harder than it already is for disabled to fucking live. Between the time a disabled person gets denied for benefits and the next time they can apply and appeal and possibly get approved(or most likely denied again), their meds, doctors appointments, mobility aids, therapy appointments and general medical problems can increase and cause mental, physical and financial stress that couldve been avoided if they were not denied in the first place.

If youre worried about the “fakers” the answer is not to assume all disabled people are liars and run the risk of making their lives harder and them sicker.

Its to teach abled people to not treat disability as a money grab, its to teach abled people to not take what isnt theirs,

Adding to the ableism isnt gonna make ableism go away