IM SO MAD AT THE SHAME SOCIETY PLACES ON DYNAMIC DISABILITIES

yes, I was walking unaided yesterday; yes, I am using forearm crutches today

yes, I was using forearm crutches but left them behind to go to the bathroom yesterday; yes, I need to use them even to walk two steps today

yes, I went up the stairs unaided yesterday; yes, I needed my crutches to go up to the stairs today; yes, tomorrow I might need to scooch upstairs on my ass because I won't be able to walk them

yes, I walked unaided to the car to get my crutches out of the car in the morning; yes, I will use them to go on a walk in the afternoon

DISABILITY CAN BE DYNAMIC, MOST PEOPLE ARENT ON A FIXED POINT OF SUPPORT NEEDS AND MOBILITY, WE'LL HAVE GOOD AND BAD DAYS AND I DONT NEED TO EXPLAIN MYSELF TO YOU

Hey can someone remind me that I still need to take breaks even on good days so I don't overwork myself and have more bad days

Most wheelchair users are ambulatory.

Meaning, most of us can walk for short distances. We aren’t faking just because we can walk some of the time.

heartbreaking when you’re openly disabled being friends with people you know have disabilities but have internalised ableism is that—

they enjoy being around you when you empathize and accommodate their struggles but when it comes to you needing the same from them, they will hold you to that internalised ableist standard

aka

“if I can do this, why can’t you?”

Genuinely furious at the SENCO at my school. Completely convinced this woman does NOT understand the concept of dynamic disabilities... "Oh, you were fine to dance in the concert but suddenly you need accomodations for exams!! do you actually need them or do you just want an advantage?" erm. yes miss. i do need them. because when i danced for eight minutes it took all my energy, and then i was barely able to stand for almost half an hour afterwards due to the amount of pain i was in. and that was with meds on a good day. I'm not gonna be able to write and move my hands for two and a half hours solid, no matter how hard I try. give me my fucking accomodations.

I DIDN'T KNOW BUT HAPPY NATIONAL MIGRAINE AWARENESS MONTH.

Things that I learned since having migraines.

They can change. You can go years without migraines, but then suddenly get them again.

Symptoms and triggers can change. You may think you don't got it that bad because you don't have the worst of the symptoms but then one day you suddenly got vertigo and vomiting.

Migraines impact the trigeminal nerve which is the same nerve impacted my TMJ pain, sinus headaches, trigeminal neuralgia, and cluster headaches. It's the biggest nerve in the face so it's pretty common to have multiple of these conditions at once.

Migraines can be triggered my barometric pressure shifts, flashing lights, sounds, and smells.

You can have migraines without aura or visual disturbances. These are harder to treat because most migraine medications require you to take them during the aura phase.

You can have what's called an "abdominal migraine" which is characterized my extreme stomach pain. This usually impacts adolescents.

You can have what's called a "silent migraine" which is characterized as migraines without the headache. In fact headache isn't even the most common migraine symptom based on a poll I've done.

Migraines can be highly tied into your allergies. Not just in the fact that sinus headaches and migraines trip the same nerve, but in the fact that your allergies can be a migraine trigger.

Migraines can make you more susceptible to alcohol especially when you're dealing with migraines triggers frequently.

Fluorescent lights are actually very bad for people with migraines because it's essentially flashing so fast you can't see it with the human eye (but trust me your migraines will know it's there).

It's actually very common for people with migraines to have heightened senses of smell, higher sensitivity to lights/sounds, etc. Some people have even noted that people with certain medical conditions have different smells.

Chronic migrains are obviously a disability but episodic migraines can be considered a dynamic disability (a disability where your needs fluctuate)

Migraine preventatives are different from migraine abortives. Doctors will usually only prescribe preventatives if you have chronic migraines or have a certain number of migraines a month.

15 migraine days a month is the number you're looking for to be considered chronic.

It's actually pretty common to be craving salt or carbs after a migraine. And listening to those cravings can actually reduce postdrome symptoms

Migraines come in 4 phases. Prodrome (irritability, fatigue, etc before the migraine), aura (visual disturbances), migraine, and postdrome (fatigue, dizziness, etc after the migraine).

The most common migraine meds are called triptans and shouldn't be taken with antidepressants because it can cause serotonin overdose syndrome.

Migraine aura isn't limited to visual disturbances. It can include phantom taste and smell (smelling or tasting things that aren't there)

People that have migraines are more likely to deal with heat intolerance

A lot of the "it's a migraine if you experience pain on this side of the head" is complete garbage. Migraines are characterized by a complex set of neurological symptoms of which doesn't always include headaches.

-fae

#IDPWD = International Day for People With Disabilities

It continues: --- The ‘saying no’ part is also an important thing I’d like to focus on. There is a significant cost (emotionally, socially, and even financially) to having more ‘better’ health days. I am constantly saying no to things I would like to do so as not to exacerbate my health. 5/ --- Though my condition will sometimes worsen for no apparent reason, one of the few things I can do is avoid deliberately aggravating it by “pushing through” the fatigue. In a culture that glorifies ‘the grind’, this can be really hard. 6/ --- A lot of the rhetoric I see regarding people with a dynamic disability carries the implication that they just aren’t trying hard enough, or that they need to push through their symptoms. The irony is that this is, more often than not, the worst possible advice. 7/ --- The main reason people seem to think this is because they misunderstand the implication of having better days. They seem to think it’s a day where we’ve woken up and finally made the choice to do something; they see it as a matter of will, not health. 8/ --- On the contrary, most people with a dynamic disability are routinely frustrated because there are things they want to do, but physically can’t (or they know they can’t afford the ‘cost’ of doing that thing). 9/ --- And there is also a selfishness that we experience from other people when they get annoyed if we say ‘no’ to an invite. That annoyance carries a tacit message: no matter the physical cost of attending an event, you have an obligation to prioritise my wants above that. 10/ --- So I would encourage you on this IDPWD to aim for empathy when interacting with your friends and loved ones who have DDs. If someone has to say no or assert a boundary, then instead of getting defensive try and realise you’re only seeing a fraction of what’s going on. 11/11

His bio: Tim Hutton @TimHuttonAu Part time teacher (by choice) | Occasional freelance writer | Full time sick/disabled person (ME/CFS) | Published in various places. Cis, but  ally https://twitter.com/TimHuttonAu/status/1731193347195482581

If I find out that my mother’s refusal to let me use crutches is causing (physical) damage to my body I might go beast mode. 👿👿

I put a mini squishmallow on my cane! Introducing Austin the Avocado! My boyfriend got him for me. I also have my loop earplugs because those are an essential for me.

I am actually very sensitive to noise in general. Especially high pitched loud noises. I get headaches very easily and am diagnosed with migraines. That's why I wear headphones and/or ear plugs. I definitely recommend the loop earplugs!

I also use Picsart to edit my photos and add cute stickers 🫶

Edit - if anyone wants the link to my handle cover, comment and I'll send it!!

I love you mobility aids.

I love you canes I love you forearm crutches I love you compression gloves I love you compression sleeves for knees and elbows. I love you rollators I love you wheelchairs I love you back braces and neck braces I love you power chairs I love you leg and arm braces I love you screen readers and hearing aids and everyone who spends the time and energy to actually help physically disabled people of all kinds.

I love everything that helps disabled people live our fucking lives

A Guide for Coming into Disability

Note: While this is meant to serve as a guide for people who are becoming physically disabled and people newly recognizing their existing experiences of disability (including chronic illness), I feel that this guide is helpful for anyone, disabled or abled. No guide is one size fits all, but I hope this can help supplement other resources that exist.

Recognizing Disability

The first aspect of coming into disability is conceptualizing what disability means for you. Some initial questions to consider are:

What is disability?

What does it mean to be disabled?

How do you identify disability in yourself or others?

Only you can define what these mean for yourself, but many definitions and models of disability exist.

Loss & Grief

As you begin to transition into a disabled body, the first sign of that change is often the experience of loss. Loss of ability, access to the world, hobbies, community, loved ones, and your sense of self are just some of the types of loss you might be experiencing. Additionally, when being a part of any marginalized community, you are now not only beginning to experience the trauma of discrimination that you’re personally facing but you are also exposed to a communal trauma of systemic marginalization.

Due to the ableist society we live in, every single person is internalizing ableism. Everything we see on the news, in movies, in classrooms, etc. is absorbed subconsciously to create a personalized narrative of the disabled experience. Weather or not that ableism is externalized doesn’t matter, because if you’re not actively dismantling internalized ableism and practing anti-ableism, then that ableism will hit you much harder when you transition into disability. The work to navigate this is constant, evolving and will change with time.

All of this is very heavy. Always unpacking, always processing, always grieving. But it does get easier to navigate, especially with the proper supports. To cope with this, I highly recommend seeking out appropriate support groups (many are online, Facebook, Discord, The Mighty are some great places to look) and considering grief counseling. Through this, remember to be gentle with yourself, cut off people if you need to, set boundaries, and do what you need to to support yourself and keep yourself safe.

Spoon Theory in Practice

A large portion of my disabled experience is simply just learning. Learning about my body, treatments, my limitations, and what I can still do. This dynamic learning often requires more language to explain complex concepts. This brings us to the spoon theory. If you don’t yet know about spoon theory, here’s the original essay by Christine Miserandino.

Spoon theory works to help explain the energy limitations of chronic illness and has been widely adopted by the greater disabled community. Essentially, it is a metaphor that uses spoons as a metric to showcase energy levels in a tangible form. Over time your spoons will change, different activities might require more or less spoons, and recharging your spoons may also evolve. This is why it’s important to use the concept of spoon theory to help you set boundaries with yourself and others.

For yourself, being able to identify your spoon levels and use them appropriately to ration energy can help you avoid falling into pitfalls like the “Boom-Bust Cycle” and better pace yourself. I put this into practice by creating lists rating activities by spoon levels. I have a master list of meals I can eat, categorized by how many spoons it usually takes to make the meal. This way, I can plan out in advance on low spoon days, like when I have PT, and know I won’t have the energy to cook a meal that takes three spoons to make, I can meal plan for the week and buy what I need for a one spoon meal that day. This can also be applied to things like chores and hobbies. I sort my to-do list by priority, and then by how many spoons it will take to do the activity. Knowing your spoon levels can assist in setting boundaries with others as well. I always have a standing appointment on Tuesdays, so I never make plans that day. I always ask for help with certain chores because even if I physically can get them done, I won’t have spoons for the rest of the day or even the week.

Accepting Disability

In order to cope with the loss of certain activities, finding accessible alternatives can go a long way. You might be able to find an adaptive way to still participate in a hobby, like adaptive basketball. There are also so many options for hobbies in the world, and you might be surprised by what works for you now! This is a good time to start to focus on what you can do, with adaptations, vs what you used to be able to/now can’t do.

Mobility aids are a beautiful tool. My advice is if you think that an aid might help you, you should at least try it! If it ends up not helping, or you don’t need it, you can always donate it. I also like to say (and my physical therapist likes to remind me) Just because you can, doesn’t mean you should.

And, of course, ask for help before your body demands it.

Disabled Liberation & Disabled Joy

If you have the spoons and time, you should prioritize learning about our history as a community (Crip Camp on Netflix is a great place to start) Additionally, you can learn about disability theory, models of disability, ugly laws, cripple punk movement, and our rights.

Disabled Joy is a concept that considers our joy to be a revolutionary act in and of itself. I use ‘joy’ here, rather than happiness, because while similar, happiness is based in the root word ‘hap’ meaning chance (as in mishap and happenstance), meaning that the experience itself is based in luck and external factors, and focus instead on the sensation associated with it– regardless of your situation, which is joy. Disabled joy looks like my partner sprinting while pushing me down the sidewalk with the wind in my face. It looks like a perfect day in Sims 4. It comes with safe foods and the healing power of accessible plauygrounds. You find it where it comes, and I hope you can find it in yourself.

Finding Community

The best part of the disabled experience, for me, is our thriving community. When it comes to community building, I always suggest online options first because they’re available 24/7 for most people, and you can reach community from your home. I’ve already mentioned online support groups, but also, online content creators are a great way to find community. If your social media following list is primarily able-bodied creators, especially ones who focus on activities that aren’t accessible to you, it can be really damaging to your mental health. This can help you to find friends who get what you're going through.

Self-advocacy and systemic advocacy resources from our peers and organizations can give you the tools and feel empowered to create change. Seeking resources by and for our community can be lifesaving. You’re reading one right now.

Welcome to the community.

♿️❤️ (wheelchair emoji, heart emoji)

ID :

Screenshot of tweet from Kelly (@broadwaybabyto) :

“When you’re chronically ill your baseline becomes everything. Whatever limited function you have left you want to protect at all costs. I suspect that’s why many who were disabled before Covid understand & take as many precautions as they can. They know what they’re risking.”

hi so. i have a question.

i have chronic knee pain, which, when it acts up, almost fully demobolizes me. but im just wondering if that counts as a disability? because it isnt constant, it's reoccuring and lasts for a month or so when it happens. i dont want to call myself disabled if im not so like. would you say that that counts as being disabled

Yes, absolutely.

I advise you not seek this content out. There's a reason I'm not linking it. It's full of abelism and gaslighting. But I just want to show you what I'm about to rant about because this woman is claiming chronic illness doesn't exist and women specifically are faking to get a diagnosis for attention. And she's claiming this is a mental health issue.

As a disabled person, I need to rant.

The first time I got a migraine. I was 10 years old. They were near constant. I know exactly how old I was because when I went to the doctor, he said it was probably the braces shifting the bones in my skull. They were called just headaches.

If you've ever had a migraine, you would understand that if you were experiencing this much pain, and you were told there was a way to make it stop, you GRAB that shit. I had my braces removed before my jaw was finished straightening because I shouldn't have had braces in the first place and my baby teen started falling out (very late, I know).

And when my adult teeth came in, I BEGGED my doctor to not give me braces again. And remember what I said earlier. If you're experiencing migraine level symptoms and you were told there was a way to make it stop. You grab that chance. Yes, my teeth are still fucked up. Yes, this leads to me dealing with chronic jaw pain.

You don't get how much pain I was in just... all the fucking time. My parents had to carry large bottles of advil with them at all times. Some of my earliest memories is being at a restaurant and my mom being like "I know this is weird but do you have any advil? I forgot to refill the bottle and my daughter is in too much pain to eat". Just from the migraine.

I was taking adult doses of pain meds with my doctors telling me to alternate Advil and Tylenol every 2 hours at the age of 10 (most meds say not for children under 12). Because migraine was not a diagnosis that existed.

When I was in high school, I finally did get a diagnosis from my PCP of "migraine". Idk if it ever went on the record but a was prescribed migraine medication. Which was essentially prescription strength advil and imitrex. There weren't exactly a lot of options back then.

And I again have specific memories of being in school. The ring of the fire alarm during a fire drill triggers a migraine. First thing I had to do when we went back in was go to the nurse and nurse had to call my parents and they had to bring my meds (special school rules the nurse needed the prescription bottle which would make it hard to have any at home). And the nurse was like "when's it gonna work?" And my mom was like "idk. If it does work it'll be like 30 minutes" and the nurse was like "Yeah we can't keep her here 30 minutes on a maybe. This is no place for a kid with a migraine. Take her home."

Throughout all this? I didn't consider myself disabled. Because I could still function. I wasn't missing too much school to pass. I was still able to pass my classes.

In college though it got really bad. I was missing 3 or 4 days of classes at a time because I couldn't hold down anything but water. There's weeks I did go to class that I just blacked it the pain was so bad. I got hurt from the vertigo regularly. It got so bad u finally sought it a migraine community just to try to understand what the hell was wrong with me and just so I had a place where I could vent. It sucked so damn bad.

And this community helped me immensely. They had a list of headache specialists which helped me find my doctor. They gave me a ton of treatment options to discuss with my doctor and they suggested vitamin supplements that I could also discuss with my doctor. It took a few years because I don't react to most common migraine meds, but a year out of college, I finally got a treatment plan that fucking helped. I live a pretty normal life now the only exception being the couple of hours it takes my meds to kick in.

And even through all of that, I hesitated to call myself disabled. I was still functional enough to graduate college without the ADA (but honestly I'd have done better if I had accommodations for all the time I had to miss). My migraines weren't frequent enough to be considered "chronic".

The only reason why I'm able to comfortably call myself disabled now is because of the invisible illness and spoonie communities. They were like "Your health issues impacting most of your life even though there's no physical symptoms? You keep missing important events duev to your health issues? You limiting what you do so to not impact your health issues? You're disabled."

Because I was so afraid of taking something away from physically disabled people by using the label. I'm still going to heavy metal concerts (yes they land me in bed for days after with a migraine). I can hold down a job and still semi-function (I'm privileged that I can get a remote job so if I can't get out of bed I don't need to call in. And I work for small companies that are more forgiving of health issues.)

Listen. I 100% believe in the spoonie movement with all my heart. But what people don't realize is that invalidating the spoonie movement invalidates people like me. People that have had pain since childhood that almost no medication can touch that's coupled with other neurological issues that is detrimental to our health. I was exercising every day, but I had to stop because there were too many days I couldn't hold down food. I was eating very healthy, but I had to stop because there were too many days where calories were more important than vitamins because again I was lucky if I could hold down food. The pain was so bad that there was gaps in my memory and I hurt myself but I couldn't remember how between the vertigo and the memory issues.

And yeah. My migraines don't affect me like that now. I'm on treatment where I don't "look disabled". I can function with the best of the abled people. But it took years of meds and trial and error with my doctor to get here. I'm functioning with the exact balance of person meds and activity levels to keep me found for the things I enjoy doing.

And I need people to realize that's what invisible disability is. Paralyzed person can't walk? They get a wheelchair. I can't go outside without spending the rest of my day bedbound from the bright light and heat? I get meds that help sooth the nervous system (honestly I don't know how the fuck my meds work but this is the equivalent of my "wheelchair")

Yeah! We look functional. That's the point. That's the entire point. Because before this we lost friends and failed classes because we couldn't get our of bed our body's failed us so hard. The only reason why abled people think we don't exist is because we literally couldn't leave the house. And online communities have allowed us to be seen on those worse days when we're normally hidden behind closed doors.

I was able to interact with people online yesterday with my migraine, when previously you wouldn't have been able to see that because I literally couldn't leave the house.

-fae

Disability

Riding the Roller Coaster of Fluctuating Disability

EmeraldMaz

Last updated: August 29, 2023

Start: When people think about disability or chronic illness, they tend to do so in a very black and white sort of way: Either you are completely disabled, or you are not — this is your permanent status, and your disability (or lack thereof) will affect you the same way today as it will tomorrow.

Were it only that simple.

Continues at:

Extract:

There are days I will be struggling to get about with a pair of gutter crutches, and a few days later I’ll be managing with one, or using only a cane. It’s assumed by those who have little experience of chronic illness or disability that I must be getting “better,” therefore I must be able to do more, and I will continue to get better.

So what happens when, the next day, you’re back to using both crutches, or a wheelchair?

Do they understand that the day before had simply been a good day? Do they know that because of that good day, you probably overdid it by taking on more and are now suffering the consequences? Or will you be met with sideways looks and, “I thought you were getting better?”

Medical update - April 7th

Yeouch