#invisible disease

[tumble-tv]

Having arthritis at 17 is funny, because I tell people and they're like, "oh, my grandma has that! she takes X, Y, Z and it helps her a lot!" Your grandma and I do not have the same arthritis. Her yoga and good vibes are not going to help me.

Then there's the whole thing of finding rheumatologists near me. There are only 2 in my general vicinity. 2 that take pediatric patients. The rheumatologist I am not currently seeing is about an hour away, so when I tell people about how awful my rheumatologist is at the moment with medications and care, they always say that i should go to another doctor when I literally cannot.

Then there's the whole thing of my doctors refusing to help me with my chronic pain because it's apparently all because of my arthritis, which has been in remission for 4 years now, so no, it's not my arthritis. Arthritis medications will not help my pain, and they refuse to acknowledge that

[xxhypersomnia]

Today and everyday, I am representing those with the rare disorder - Idiopathic Hypersomnia.

IH causes one to be very sleepy during the day regardless of the amount of sleep received. Unfortunately, we have yet to figure out what causes IH or how to treat it. I have participated in numerous medical trials, taken trial medications in every form imaginable, and I have even been injured by medical tests gone wrong (induced sleep paralysis = broken toe). I have spent countless weekends in a hospital bed, forced to stay awake for 25+ hours in order to conduct testing so perhaps others can find relief.

How does it affect my life?

I’m exhausted all the time. I honestly don’t know what “being refreshed” feels like. I haven’t felt that since I was a child. I sometimes sleep whole days away and it affects my relationships. I can’t drink with friends because the alcohol will make me fall asleep at the bar. I have been bruised from too much time in my bed or couch. It makes it extremely hard to stay motivated at the gym. I have fallen asleep on a treadmill and while recieving tattoos. Worst of all, it affects my memory (along with another neurological disorder). Sleep is so important to our brains, it’s a time for it to recover. And my particular version of IH causes my brain to float in light sleep, hardly ever reaching REM. So my brain is never healing. I forget things, I get anxious that I’m forgetting things, and I have a hard time formulating words that I want. It hurts to know I’m smart but can’t always present myself that way.

I could go on and on about the affects it has on me, but honestly the hardest part is people who don’t think you have a disorder. “I’m tired a lot too!”

I will always and forever support invisible disabilities. It is a backwards way of thinking to think disability means wheelchair, or some other physical ailment. Just because you can’t see a disorder, doesn’t mean it’s any less real. “You’re too young to be forgetting things..” that’s one I hear A LOT. Yea, thanks for the reminder than I’m on my way to early memory loss way before my time. I can’t even remember vacations with my family. Memories that I know I love but can’t reach.

Be kind, be cautious with your words, be supportive even if you don’t know the whole story, don’t deny someone else’s reality just because it’s different than your own.

To all my loves with narcolepsy or any other invisible disability, I see you ♥️

[skybluegh0st]

If you suffer with chronic sinusitis like I do, here’s some memes to help cope with the pain

[dddemigirl]

My physical health problems lead to panic attacks which then affect my mental health too. All this shit a few weeks before I turn 28. I feel so uncertain and scared.

[pose4photoml]

Appointment time~ kind of nervous !!!

[pippinmctaggart]

My Crohn's can suck it.

[thenetherlord]

Happy Disability Pride Month to people...

Who have been diagnosed and been on treatment...

Who have not been diagnosed, but WANT treatment...

Who have been diagnosed, and know almost everything about their condition/disease/disability...

Who have not been diagnosed, and barely know their triggers or how it started...

Who talk about their disability, and make it a part of their identity...

Who don't talk about their disability freely, and might be too scared to make it part of their identity...

Who have been on a long and hard struggle and finally, FINALLY got into remission...

Who are still trying to get into some 'better' state...

Who have an invisible disability and don't 'feel disabled enough'...

Who have an invisible disability that has been over-dramatized and hear jokes about it constantly...

Who have been in remission for a while, and don't feel like 'enough' while talking to disabled peers...

Who have not been diagnosed, and sometimes feel like their experiences 'aren't enough' to warrant the disability...

Who have a physical disability, but didn't realize the mental toll it would have on them...

Who have a mental disability, but didn't realize the physical toll it would have on them...

Who got diagnosed rather young and have lived with their disability for most of their life...

Who are only just learning how to cope and live with their disability...

Just like me.

Happy Disability Pride Month, ya'll!

[spooniestrongart]

[tumble-tv]

Brought my crutches into the car today and my mom said I "don't need them because of all the walking around the abandoned asylum" I did a few weeks ago, as if she didn't notice the five days afterward that I was out of commission and in so much pain I could barely walk. I was in so much pain that entire day at the asylum, so damn much, but I knew if I said anything she would make fun of me or tell me that I shouldn't have gone and I'm sick of her saying things like that. Anyways, how's y'all's days going?

[meandmydisease]

Sometimes I get so frustrated by how people view others. My chronic pain has been through the roof lately, so at work I take the elevator to reach the upper floors—no biggie you’d think. And the amount of people ‘jokingly’ calling me lazy or something similar because of that is crazy.

The worst part is, I work in a school and the worst people doing this are teachers that teach social subjects. They’re training the next generation of nursing assistants and social workers. Shouldn’t they be more aware of the issue with comments like this?

Instead they try to make me defend my actions, simply for having an invisible disease. Screw that. I won’t laugh at your stupid attempt at a joke and I won’t offer up an explanation. People who take the elevator aren’t lazy, regardless of the reason they take the elevator. Stop judging situations you know NOTHING about.

[joyfulsuitcaseneckplaid]

Selma is so inspiring. No matter your struggle, may it be physical, mental, whatever, don’t let it stop you from enjoying life and taking on any challenges thrown your way.

[olawolasstuff]

YOUNG PPL WITH FIBRO!!!! WE WOULD LOVE IT IF YOU JOINED THE CLUB!! The ages accepted are 13-21!!! Even if you are undiagnosed but suspect that what you have is Fibro, you are still welcome!!!

[hellyeahsickaf]

I found an extremely dope disability survival guide for those who are homebound, bedbound, in need of disability accommodations, or would otherwise like resources for how to manage your life as a disabled person. (Link is safe)

It has some great articles and resources and while written by people with ME/CFS, it keeps all disabilities in mind. A lot of it is specific to the USA but even if you're from somewhere else, there are many guides that can still help you. Some really good ones are:

How to live a great disabled life- A guide full of resources to make your life easier and probably the best place to start (including links to some of the below resources). Everything from applying for good quality affordable housing to getting free transportation, affordable medication, how to get enough food stamps, how to get a free phone that doesn't suck, how to find housemates and caregivers, how to be homebound, support groups and Facebook pages (including for specific illnesses), how to help with social change from home, and so many more.

Turning a "no" into a "yes"- A guide on what to say when denied for disability aid/accommodations of many types, particularly over the phone. "Never take no for an answer over the phone. If you have not been turned down in writing, you have not been turned down. Period."

How to be poor in America- A very expansive and helpful guide including things from a directory to find your nearest food bank to resources for getting free home modifications, how to get cheap or free eye and dental care, extremely cheap internet, and financial assistance with vet bills

How to be homebound- This is pretty helpful even if you're not homebound. It includes guides on how to save spoons, getting free and low cost transportation, disability resources in your area, home meals, how to have fun/keep busy while in bed, and a severe bedbound activity master list which includes a link to an audio version of the list on Soundcloud

Master List of Disability Accommodation Letters For Housing- Guides on how to request accommodations and housing as well as your rights, laws, and prewritten sample letters to help you get whatever you need. Includes information on how to request additional bedrooms, stop evictions, request meetings via phone, mail, and email if you can't in person, what you can do if a request is denied, and many other helpful guides

Special Laws to Help Domestic Violence Survivors (Vouchers & Low Income Housing)- Protections, laws, and housing rights for survivors of DV (any gender), and how to get support and protection under the VAWA laws to help you and/or loved ones receive housing and assistance

Dealing With Debt & Disability- Information to assist with debt including student loans, medical debt, how to deal with debt collectors as well as an article with a step by step guide that helped the author cut her overwhelming medical bills by 80%!

There are so many more articles, guides, and tools here that have helped a lot of people. And there are a lot of rights, resources, and protections that people don't know they have and guides that can help you manage your life as a disabled person regardless of income, energy levels, and other factors.

Please boost!

[tamacathers]

Airbnb’s are often happily surprising, being even better than the pictures look. For this one...well, the pictures look better. The couch is rather scuzzy, having some unspecified stains and being very not-new. It’s fine for comfort, though. Margaret made half into her bed, as there is only 1 twin bed on the ground floor. 

There are 2 cute little bedrooms, and you could sleep 7 people here on beds, but only one bed, a twin, is on the ground floor. The rest of the beds have to be reached by steep slippery ladders.

There are things I LOVE about our airbnb. First of all, it is quiet. We are officially in the city center, but off the main drag in a residential area. But our place is in the ground/ half underground floor and an interior apartment. It make it quiet. It also makes it the second thing I love, cool. It is 80 F outside here, but our place is always cool and quiet.

There are a couple things I don’t like about the Airbnb so much, other than the sleeping arrangements. The door seems to have come from a bank vault. It is heavy and has 6 bolts in one, plus a locking latch mechanism. It’s all fine for me, but I worry that the little know you use to open it from the inside would be difficult in fire. We have no other exits and we are very interior. 

Secondly, Margaret can’t open the door from the outside. We were both unable to do so the first time we came back. We had to accost a nice lady resident, who helped us. Even she struggled, but she did know how to open it. It is a little like my garage door back home. You have to pull and push in the key while turning at the same time, adding a little kick to the bottom of the door if that alone isn’t enough. Did I mention it is a heavy door? A very heavy door, if you kick it the wrong way!

If you are coming late to the scene, I am here in Spain to walk the Camino Ingles AND to raise awareness of Coronary Microvascular Disorders, something I have been recently diagnosed with. 

I am likely to have a limited time during which I can do this sort of exercise, so I am doing it now. 

I want others to be aware of these disorders, for themselves or their loved ones. 

These disorders are not actually uncommon, but they are not often diagnosed.See previous posts or my YouTube channel (video#3) to find out more.  I am providing free information about my medical condition in hopes that it helps others. 

[perisbpddiary]

Guess who has to get an echocardiogram and is wearing a heart monitor <333 it's this bitch