Being Chronically Ill With Fluctuating Symptoms Is So Annoying Because When It's At It's Worst Im Like

Let's talk mobility aids!

Canes

Canes are for when you need to take a little bit of weight off of one side of your body, need a little help with balance, or need a little extra stability when you walk. It's an easy mobility aid to find and get, and it's pretty easy to figure out how to use. Have the cane sized so the handle sits at wrist level, then hold it on the opposite side to the one that hurts. Match your cane strikes to the steps on the hurt side. It will hurt your arm, elbow, and shoulder sometimes, but having a properly sized cane will help.

Rollators

Rollators are kind of the "next step up" in support. They come with more restrictions, you get limited to ramps and stuff, but they're also the least restrictive wheeled mobility aid because they're light and easy to pick up and toss around. They also have a seat a lot of times and a basket so you don't need to carry stuff. They're for when you need a place to rest, something to lean on when you walk, better balance assistance than a cane, and less weight bearing than a cane. I also found that it helped me with fatigue quite a bit. There's two main kinds, euro style like the first, and regular like the second. There are other fancier ones but I'm covering the basics here.

Rollators are my favorite mobility aid and I've used everything from canes to a fancy high grade power chair. They're just the perfect balance of help and freedom. They provide so much support for how far they go.

Crutches

Arm crutches are pretty neat! They're a lot more ergonomic than a cane. In fact, some people use a single arm crutch as a cane. They distribute the weight a little better, so it's not all on your wrists, and they support you better than a rollator can. The major cons I found are that they take two hands to use so you can't carry much and I had a really hard time trying to learn to walk with them. A lot of people who use forearm crutches have other mobility aids and use the forearm crutches when they want to or need to walk.

Manual Wheelchairs

These are for when walking becomes more difficult than pushing a wheelchair. There's no weight being put on your legs and feet and depending on your needs, you can get really specific with your adaptations if you have a custom wheelchair verses a standard wheelchair. My first custom chair looked like a monster truck because i took in the woods and gravel, my second custom chair after I got sicker has a head rest, a backrest that holds me up, and a little electric box that I can attach that helps me push. The difference between getting a standard and custom wheelchair is dependent on how much money the user has, what kind of needs they have, and what kind of medical access they have. (One is not more "real" than the other.) I highly recommend getting a cushion for under your butt if you have a standard chair without a cushion, I used a standard full time for 6 months and a cushion made a huge difference.

Mobility scooters

Mobility scooters are for people who can't walk long distances, but can still walk with the help of a cane or unassisted. If you can walk around your house, but not really much else, a mobility scooter might be the aid for you! There's a lot of different styles and battery life lengths and handling abilities so try a few different scooters out if you can.

Powerchairs

Powerchairs come in a couple different types or "groups" depending on your needs. Group 1 is the kind of chair you're probably most familiar with. It's basically for someone who needs a powerchair to get around their house, the doctors, office, and grocery store. You can't do any custom seat cushions or anything, but it's for people who don't need it. Think of like... someone who can walk pretty okay still, it just hurts to walk or they're off balance or a little weak feeling. A lot of times more elderly people will use these, if you're more active look into group 2

Group two chairs are little more durable, a little more stable, sometimes you can switch the captains seats out for custom seating... They're what a full time powerchair user would use if they don't need specialty functions like tilt or recline. They also often have 6 wheels rather than 4 like the group 1 chairs have.

Group 3 powerchairs are reserved for specific diagnoses like muscular dystrophy, ALS, and other severe neurological and neuromuscular illnesses. These are also called "rehab" chairs because they're for making sure severely disabled people have quality of life. The tilt function is for pressure relief, though you can also get things like elevation so you can raise and lower your chair, and some of them can recline flat. There are other avenues of moving grade 3 power chairs beyond the joystick as well in case someone can't use their hands or doesn't have them. (Head controls, torso controls, and straw controls called sip and puff are alternatives.) They can go on a little worse terrain than group 1 and two chairs and go a little farther, but if they get stuck they weigh 350 lbs and it's awful.

There's a few other types of mobility aid that I don't know enough about, like ankle foot orthotics and gait trainers, but these are the basic "mobility aid" most people will come across.

If you use another type of mobility aid and want to educate people, add it on!!

Sometimes being disabled feels like you’re surrounded by people with superpowers, and you’re the only regular human.

Because I don’t really feel like I can do less—I feel normal. I’m so in tune with my own body, my own abilities, my own experience. I’ve lived this way for so long.

But then I look at other people, and see how much more they can do, their stamina, their resiliency, and I’m…baffled. Befuddled. Astonished. They seem downright superhuman compared to me. They seem like goddamn superheroes.

I need non autistic people to realise meltdowns are a real debilitating thing that has a serious effect on your mental and physical health NOWWWWW!!! The way its been trivialized and lessened pisses me the fuck off. It's not a tantrum and it doesn't come from "being too weak-willed" it's painful and it's embarrassing AND MOST OF ALL IT'S INVOLUNTARY!! Don't claim to be an ally to autistic or disabled people and then make fun of people who have meltdowns. Literally get the hell out of my sight

narcissism/NPD recovery resources, because there’s like nothing good out there

Books and things to read:

Borderline, Narcissistic, and Schizoid Adaptations by Dr. Elinor Greenburg - Aimed at providers but apparently super great for self-help too

How Do You Develop Whole Object Relations as an Adult? by Dr. Elinor Greenburg - Tips on how to stop seeing yourself and other people as only either all-good or all-bad

10 Stages in the Treatment of Narcissistic Disorders by Dr. Elinor Greenburg - Goes through the stages of treating NPD

Rethinking Narcissism by Dr. Craig Malkin - A book about promoting healthy narcissism instead of unhealthy narcissism

Antisocial, Borderline, Narcissistic and Histrionic Workbook: Treatment Strategies for Cluster B Personality Disorders by Dr. Daniel Fox - what it says on the tin. May be best done guided by a therapist

Shame in patients with narcissistic personality disorder PDF - What it says on the tin.

Narcissus and the Daffodils - an essay about NPD by someone with NPD. Probably the best description I’ve ever seen

Things to watch and listen to:

Recovery FOR the Narcissist by Dr. Eric Perry - A compassionate podcast to provide insight, support, and encouragement to anyone who exhibits narcissistic tendencies. Very in-depth

Early Morning Barking - A YouTube channel by someone with BPD and NPD about coping with and educating people on BPD and NPD. He also has a Recovery from NPD by Dr. Todd Grande - A video about this provider’s experience with helping people recover from NPD

Misc:

Narcissism Self Help Therapy website - A daily program for people with NPD (may have some triggering aspects in Part 2 of the program)

NPD Safe carrd resources - More resources for NPD (I have not gone through all of these so I don’t know how good they are)

NPD Recovery Comics by The Ego System - A bunch of fantastic comics about recovering from NPD.

There are no disabilities which are raised above ableism. The person in the wheelchair, the autistic person, the person with schizophrenia and the person with an invisible chronic illness may all experience society's ableism in different ways, but none of them can expect to avoid it. So the "you wouldn't say X to Y" advocacy needs to retire yesterday. They say all kinds of ableist shit to all of us and it's time to try out some actual solidarity instead of arguing about who has it slightly worse

Recently saw an insta vid where a musician was singing lyrics that described their intrusive thoughts as a person with OCD, and in the comments every so often there would be people writing like "bro what is this 🤨🤨" and "keep this between you and your therapist dont post it on the internet" and it just further fueled my belief that OCD symptoms and intrusive thoughts need to be talked about more because a majority of the struggle with the disorder is the shame surrounding its symptoms. OCD is not able to be easily romanticized or 'quirky'fied like other disorders or neurodivergencies have been*, and as a result its symptoms are more quickly met with disgust or repulsion.

Other people in the comments were thanking OP because it captured the struggle of real intrusive thoughts instead of impulsive ones. Impulsive thoughts are more of the 'I'm gonna dye my hair randomly on a thursday night' thoughts vs the intrusive 'what if I drove my car into that family and suddenly killed us both' thoughts, the latter of which make OCD as a disorder truly debilitating. And the people that immediately assign bad morals to intrusive thoughts? They only further condemn people with OCD to never wanting to talk about the symptoms they've already been struggling with shame about.

I feel it needs to be made more blatantly explained to the public that OCD intrusive thoughts aren't desire based. They're fear and disgust based. You fear hurting anyone so badly your mind can't stop thinking about what if you hurt someone. You fear molesting anyone so you never want to even touch anyone. Your mind fixates on the 'what ifs' and distorts them into the idea that, because you think this way, you must want to act this way--when the reality is the exact opposite.

If a person with OCD ever confides to you one of their intrusive thoughts and you feel a knee-jerk reaction of disgust towards them, it needs to be reiterated that:

1. the person does not want to be thinking about this, their brain is legit hardwired to make those thoughts pop up

2. the person themselves also feels this disgust, often intensely, and they very likely resent themselves for ever thinking it

and

3. they have no desire to enact the intrusive thought, because its intrusive nature hinges on the person's fears and dislikes.

*And to clarify what I mean by romanticization and 'quirk'-ifying, I do not mean to imply that romanticizing any disorder or condition is inherently a good thing. It's only to state that conditions like anxiety and ADHD have been made such common/'trendy' topics recently that they're less taboo to speak about--leading to more people talking about their struggles with it, and helping others realize they might have it too and aren't alone. Because certain OCD traits aren't as marketable (obviously) a lot of those with it are left rather isolated.

There's only one real way to categorise disorders and it's when you google it and the first results fit into one or more of the following categories:

1. "Is your child-" "Does your child-" "How to cope with the burden of being a parent for-"

2. "How to get better: Step One: have a lot of money!" "How to get better: Step One: simply stop having it!"

3. "10 Ways To Spot Sickopaths With This Disorder So You Can Protect Yourself" "The Bad People Disease -by Dr. Eugene X."

Thinking about the dichotomy of "I feel uncomfortable/triggered in the presence of x/y/z environments I would like to be someplace without that" that I constantly see online and when I tell my therapist I really get uncomfortable when people raise their voices around me even if they aren't actually mad and her response of "you can only control your own reactions and emotions, it's not really fair to police others on how they should exist in your presence" and honestly it sucks to hear but she's right.. it's good to have people be conscientious of what triggers you but really it's up to us to do the hard work of building that emotional resilience. The idea of people around me having to be hypervigilant of what they say and do lest I start getting dysregulated does not sound fun at all, I want people to feel comfortable being themselves around me and that means training my dumb lizard brain to chill tf out. Living in a constant state of avoidance sucks ass for everyone involved.

sometimes i feel like people forget autism is a disability. and that’s not a bad thing! i’m all for disability acceptance, im proud of my disabilities. but i feel like we forget autism can hurt.

it hurts that i have to put more time and energy into socializing than others.

it hurts when i need to move so bad, usually cause im overwhelmed by either my surroundings or emotions, that i thrash and hurt myself.

it hurts that i cant be in places that are too loud or too bright, which on bad days can be as simple as a small, quiet noise or dim lights.

it hurts that i struggle to tell when im hungry, thirsty, tired, etc. so i can’t properly take care of myself. it doesn’t help my insomnia and i get very nauseas and get UTIs.

i 100% believe in autism acceptance. i don’t want a cure. but i also want us the acknowledge that it can hurt. it doesn’t mean my entire life will hurt, but some parts will. and i want a community where we can see both sides, see the hurt, and celebrate it anyway.

It okay if you want to get rid of your autism.

Lot of people on internet say that autism great and that they like it. That okay too, everyone allowed own opinion on self.

But not make you bad person if you don’t like it.

It hard having meltdowns and sensory overload. Hard to need others to care for self.

You allowed to dislike your autism.