Chronicles Of Me

[98lindsey]

Having a chronic illness that isn’t deadly doesn’t take your life. But it does take your life. 🫤

[positivelyqueer]

hi, you there who are or are thinking about spending all day in bed, it’s okay, I’m not telling you to get up. I’d just like to do a quick check in to make sure you’ve got everything you need to be comfortable and safe.

Have you gotten up to take any meds you need?

Do you need to open or close your windows or curtains/blinds to make your environment nicer? (Fresh air, keep the cold out, sunlight/darkness)

Do you have a water bottle or a glass of water easily accessible? (Can also be juice, cordial, a meal replacement drink or anything else)

Do you have any over the counter or prescription as required meds you might need, like painkillers or anti nausea meds?

Is your phone or laptop charged?

Are you wearing comfortable clothing?

Do you have enough blankets/pillows to be warm and comfortable?

Do you have any snacks like fruit or chips or muesli bars in case you can’t get up to make a meal?

Are you able to change positions in bed (or sit up if you’re able)?

Do you have any regulation tools like fidgets, ear plugs, or journaling/art books or low energy hobbies you might want?

Are you being gentle and patient with yourself and your body today?

Thanks for doing this check in with me. I like to have some of these things prepared on my nightstand, or all together in the same space in my room so I don’t have to do as much work on low energy days. It can also help to have someone else prepare or get these things for you if you’re unable. Hope you have an uncomplicated day.

[hellyeahsickaf]

When I say "I can't do that" what I'm not saying is:

I don't feel interested in doing that

I don't care enough to

I'm too good to be doing that

I don't think you deserve that of me

I'm not in the mood to do that

Not now, I'll do it later

Maybe

If that's what I meant, that's what I would say

What I am saying is:

It will negatively affect me in ways I can't afford

I simply can't physically fucking do that

I can't risk the potentially severe consequences I may experience if I overestimate my ability to do that

And if I explain that I am unable to do that, it is not an invitation to:

Tell me how much my disability hurts your feelings

Ask if I'm sure

Interrogate me because you believe yourself to be the judge of how unwell is unwell enough

Put words in my mouth ("why don't you care?")

Tell me how easy it would be

Remind me of how many other things I've been unable to do. I keep the score more than you do

Accuse me of exaggerating or faking to avoid doing it

Ask me again shortly

Make assumptions about additional explanations. (I must be mad at you, I must not care about this)

Offer compensation in return ("I can pay you" "we can do something you want to do after" "I'll get you something you like")

Ask what it would take for me to suddenly be capable of doing it

Tell me how you do things you have to do when when you're tired and then you can just rest and recover. I am not like you

Remind me of a time I was able to do that. Either I had more spoons or was less severely disabled if at all.

Say that if I was well enough to do X today, I should be able to do this as well. Energy doesn't work that way. Are you capable of running 8 miles right this minute just because you were okay to work a 10 hour shift today? That's what I thought

Suggest simply doing it a certain way ("take your time", "do it sitting down", "we can stop and take breaks", "just take your painkillers", etc)

But it is an invitation to:

Leave me the fuck alone about it 💕

[cfs-crohns-colitis-warrior]

By brother always used to say (and probably still does say) there’s no such word as “can’t” because it’s really just “won’t” and it pissed me off to no end.

I’m like “ I can’t go to any cinema except *regular cinema* anymore”

Him: “you mean you won’t”

Me: stays silent cause I cba to deal with the argument but what I really mean is “I can’t go to any cinema except *regular cinema* anymore without it causing so much pain and exhaustion because the seats are so uncomfortable whereas *regular cinema* has recliners now and that means I can actually comfortably watch a 2-3 hour long film and not come away in fucking agony.

Yeah, maybe can’t is basically won’t, but not in a bad way like you mean it brother. There’s always a reason someone says they can’t do something. If they tell you they can’t don’t fucking question them or make them feel bad about it. Don’t be a dick.

[opalsiren]

disabled/chronically ill people in general do not have the same number of usable hours as ableds. i can't meet my friend tomorrow because i need to wash my hair, and i can't meet them the day after because i need to do a load of laundry. i can't meet them thursday because i have an important appointment on friday, and if i overdo it on thursday i'll have to cancel friday's appointment. then i can't meet them on saturday because i'll be recovering from going out on friday, if i even manage to make it out the house. the old 'we all have the same 24 hours in the day' saying does not apply to us.

[myalgicencephalomyelitiscfstom]

[myalgicencephalomyelitiscfstom]

[98lindsey]

It’s also important to remember that someone who is disabled that didn’t do everything right is allowed to receive help and exist. It’s ok to do things wrong and be disabled as well.

[98lindsey]

Me sitting here wondering what this squeaking sound is only to realize it’s me wheezing. 🤦‍♀️

[like-i-was-an-old-cardigan-deac]

who else is sick of facing ableism in the process of getting accommodations!!

[98lindsey]

People in charge of accommodations seem to be under the impression that they can only provide a set list of accommodations. If it hasn’t been done before they act like it’s impossible. But the truth is every accommodation was new at first. Yet disabled people still get thrown under the bus every time we try to TELL these people EXACTLY what we need.

[98lindsey]

I was diagnosed with pots when people still thought it meant I was smoking too much weed. I had to intricately explain the disorder to every doctor and nurse I encountered. I spent years looking for treatments and reasons behind why I was sick. I found nothing. Now, everyone knows what it is.

Don’t get me wrong, I’m glad it’s more known and diagnosis is easier for people now. But I’m also really jealous that people are understood so easily. I wish it could have been like that for me.

I’m also having to end my journey to get a service dog because I’m now too sick to take care of one. But in the beginning the idea of a pots alert dog was very unknown and super rare. Now I see a pots alert dog every time I go on Facebook or TikTok. 7 years later I have no service dog and I’m now diagnosed with some other disorder people don’t know about.

I see people living their lives with pots and I’m so jealous because when I was diagnosed I was forced to end my life as I knew it and change my path. There were no accommodations or understanding people that could help me. So many people thought I was faking or exaggerating and wouldn’t take me seriously. I’m glad it’s better for other people but I still wish it would have been easier for me.

[howtobeapersonwithfibro]

However bad you think accessibility on college campuses is, it's worse.

Looked around today and basically wanted to give up just trying to figure out where to enter this one building and how the hell I am supposed to even park close when there are only special lots.

It makes me want to give up just because of that. I shouldn't have to panic about just getting to and from my classes.

We deserve better.

[98lindsey]

This so so relatable.

I chose my my college before I became disabled, but if I had the chance to choose it over again with accessibility in mind, I would have chosen a different campus. And that’s only based on the ground being flat, because past that, there’s not much change in between campuses. They are 100% built for healthy (may I even go as far to say athletic?) young adults.

It doesn’t matter how many accommodations they add after the fact. If a building wasn’t built to be intentionally accessible than it is very hard to change it afterwards.

[normal-with-adhd-is-a-joke]

What people don't understand about "no excess physical activity/exercise" is that everything is physical activity.

I told the people at orthopedic urgent care that I can't do physical therapy because my condition doesn't allow for exercise. They gave me a list of things I could do at home. They were exercises. I was frustrated at first, but it made me realize how able bodied people can't conceptualize "no exercise" at all.

Walking down two hallways to get to my college class is exercise. Cooking and baking are exercise. Getting something from downstairs is exercise. Even typing is exercise. Each one of those things chips away at my ability to do simple things, like sit upright or speak or even just stay awake. When someone says they can't exercise for medical reasons, that means they can't, and pushing them to do physical activity because it "doesn't take that much energy" is dangerous. Everything takes energy.

[perrettatheinjured]

A phrase that bothers me, as a chronically ill person, is "You must be feeling better."

First of all, this is patronizing. This is a phrase smug adults say to a child who they think is malingering. It is not what you say to your adult friend with an intractable forever-illness.

Second, there is no "better." I'm feeling somewhat bad all the time, and that's ok, but I don't think of this in terms of "better" and "worse." Are you, an able person, thinking of your daily existence as "better" and "worse"? How would you feel if you told someone about a particularly above-average day, and they responded by saying "Oh, so things must be going better"?

I'm not good at walking. I haven't been in remission in two years. If I have a day where I can make my own meals, that doesn't mean I am "better." It means I am having a good day, which is ephemeral, but this is ok. I don't think that tomorrow will be "worse," even I can't do as many things as today. I think tomorrow will be tomorrow.

[98lindsey]

Not me being accused of “feeling better” when I answer the phone with a happy tone.

[powerrangersystem]

ID: Text reads "So if you're just in pain all the time what do u do at home all day?" Me: image with four panels. first panel is a small cat tucked into bed. Second image is Kermit wrapped in a blanket. Third is Kermit lying on the ground on fire. last image is a large cat laying on something resembling a pillow. By @iluvmyheatingpad End ID

[98lindsey]

Sometimes I think about how my sister leaves when I’m in bed and comes home when I’m in bed. Then she makes me dinner and even will bring it to me if I’m feeling bad. I feel like I look so lazy and unproductive and like I’m not trying to succeed. But then I realize that me succeeding is me not triggering symptoms, which requires laying in bed. It’s not a normal life but it’s what I have to do to survive.

[98lindsey]

There are so many people who are disabled or chronically ill who don’t have people who will care for them or about them. And then there are those with family who claim to care but only seem to take action on the surface. I begged for so many years with tears and sobs for my person to hold me and take care of me without me begging. But it never worked because they weren’t capable. I can’t tell you how many times I blamed myself for not being good enough to care about. Now I live by myself and while I struggle everyday with life, I don’t deal with the emotional baggage of trying to force someone to show their love for me. Maybe I’ll find a person one day who loves me like this, but if not, I’ll keep on going with trying to love myself.

[spooniestrong]

Friendly reminder that chronic and invisible illnesses are not magically cured by exercise, changing your diet, “clean living” or suddenly becoming vegetarian or vegan.

Believe it or not, but most disabled people cannot afford to overhaul their diet and swap to completely organic, vegan foods. Some disabled people are in too much pain or too exhausted to exercise. What may work for you may not work for others.

Chronic illnesses are lifelong. And in many cases, terminal. They cannot be cured, they can only be suppressed. So don’t berate and dictate to disabled and chronically ill people about how they should go about "curing" themselves.

[98lindsey]

Horrors of Accessibility at College #1

Getting around campus:

Having no place to sit while waiting for the bus or the actual disability van that drives people around campus. Most days I sat on the ground waiting because it was the only option I had.

No clear signage on where to wait for the disability van.

The disability van only dropping people off a certain spread out (unmarked) points on campus. Instead of, you know, actually taking that person to the building they need to go to.

Refusing to drop students off at a more accessible entrance to a building because it wasn’t at one of the (unmarked) stopping points.

Drivers being told they are not allowed to help student get into or out of the disability van.

Having to call for any change in schedule. No better way of communication with the disability transportation services. Also caused me to wait more than 30 minutes sometimes when I thought the van was running late but it actually went to the wrong location or showed up at the wrong time. They never called me to see where I was, just decided to forget about me.

The disability transportation services NOT RUNNING ON THE WEEKENDS. At all. Ever. How can they just not provide transportation for the disabled on certain days. Disabled individuals don’t stop existing on the weekends.

[98lindsey]

Fat and Disabled are allowed to exist together and separately.

My fatness doesn’t cause my disability and my disability doesn’t cause my fatness. My body should not have to be viewed as something wrong because I’m fat. My body shape is not something that needs to be fixed and it’s certainly not something that would fix my disability if it changed.

I’m not lazy for being fat and disabled. I’m not, not trying enough to get better if I choose not to pursue weight loss. I can eat what I choose and don’t deserve to be judged for it. I am beautiful and gorgeous and loved exactly as I am and I don’t owe anyone the battle of trying to lose weight to prove that I’m worthy.