A few years ago I caved and bought a cheap Robo vacuum.

I had resisted for years - scolding myself with gaslighting comments like “your condo is so small - you SHOULD be able to vacuum yourself”

I was so mean to myself that I refused an accommodation tool that would help me

This is a common experience for disabled people. We often struggle to ask for the help we need. We feel bad about requiring assistive devices or items that will make life easier.

We see them as a “frill” because other people have taught us we don’t “deserve” them

I bought the cheapest one I could find and it still sat in a box in my apartment for months before I finally set it up.

It sat in the corner taunting me. Reminding me that I shouldn’t have wasted money, that I’m pathetic for not being able to clean my own floor

This tiny little tool that most people buy without a second thought caused me so much mental anguish.

Why? Internalized ableism.

It was the same thing with a shower chair. I resisted for years because I felt it meant I was “lazy” or “giving up”

Imagine a non disabled person thinking that way? They wouldn’t.

When you’re non disabled you’re taught that you DO deserve all the nice things.

You need help with something? Cool! You earned it!

You want a Robo vacuum to save you time? Go get it you worked hard for it!

It’s capitalism and ableism all rolled into one.

This idea that if you’re economically active and healthy, you are entitled to all the great things.

If you’re not? Sit down and accept whatever scraps the world throws at you and be grateful for them

It’s harmful and it results in people pushing themselves to the point of harm

I passed out in the shower and dislocated my shoulder before finally getting a chair

I face planted while vacuuming and ended up black and blue.

For what? To appease some outdated notion of worth?

I firmly reject our societal conception of worth.

We all have worth. A person shouldn’t have to work or have good health to be considered deserving of help, accommodation or love.

So I set up my Robo vacuum… and something incredible happened

I fell in love with it. He became my best friend. This tiny little device brought me more joy than I ever thought possible.

With the touch of a button my entire floor was cleaned and I didn’t have to exert or risk my health

My mast cells improved because I was able to stay on top of dirt and dust better.

My POTS body appreciated not spending days in a horrible flare after an attempt at vacuuming that didn’t do half as good a job as my Robo pal.

He broke the other day - and I’m not embarassed to admit that I cried.

He served me faithfully for years … and had clearly been tired these last few months.

But when he made his final sad little “meep meep” noise… I shed a tear

I cried for the loss of my little buddy, but also for everything he gave to me.

He represented the beginning of my journey to lean into my disabilities. Start accepting and accommodating my body instead of fighting it.

It was a huge gift. It relieved me of an enormous load I didn’t even know I had been carrying.

Now I have various bathroom safety tools, I’ve baby proofed parts of my home, I have a carer help me with showers and other difficult activities of daily living.

I know now that I’m worth it - and in a weird way my Robo helped teach me that.

We are all worth it - and we need to do whatever we can to remind ourselves (and each other) of that fact every single day /14
The world can be a hateful place with many people looking to tear us down.

Never forget your worth isn’t about what’s in your bank account, how healthy you are or what your job is.

It’s about YOU. Who you are and what you bring to the world

You are loved. Just as you are.

Influencer Dominique Brown Dies of Food Allergy at 34

Anaphylaxis needs to be taken much more seriously than it is.

Epi is great - but it’s only buying you time. Biphasic reactions can be lethal.

Also - especially if you have MCAS - make sure to learn the various ways anaphylaxis can present.

It doesn’t always involve the airway.

This was (in my opinion) a preventable death. It was an egregious disregard for Dominique’s life to suggest she take photos before going to get medical care.

Even “if” you think your reaction isn’t progressing quickly - it could change in an instant.

You should never delay medical attention

If you’re new to anaphylaxis and/or new to MCAS - I highly recommend learning the various ways it can impact your body.

I didn’t realize I was having anaphylaxis the first time it happened to me. I thought it was the flu.

I had diarrhea & vomiting, sore throat, fever and bone pain.

I finally went to ER after three days of suffering not because I suspected anaphylaxis - but because my throat was so sore I couldn’t keep fluids down.

The triage nurse took one look in my airway, stabbed me with an epi pen and whisked me into a code room.

My “sore throat” was actually swelling

My vomiting and diarrhea was classic GI anaphylaxis - and I was also having significant cardiac symptoms.

Thankfully I got medical care in time - and the team who treated me explained what to look for in the future.

Many of us think of wheezing, hives, hoarseness and throat closure when we picture an anaphylactic reaction.

In reality - it can spare the airway AND the skin. It can impact your gut, your heart and your reproductive organs.

In fact - my doctors can actually tell when I’m going into anaphylaxis by the changes in my EKG (highly recommend reading about Kounis Syndrome if your MCAS causes cardiac issues)

When it comes to anaphylaxis - treat early & get to hospital. Make sure you always have an epi pen (or two) with you and check regularly to make sure they haven’t expired.

If you’re unsure if you’re in anaphylaxis - go to ER to be certain.

Had I waited much longer my throat would have closed

Lastly - take people’s allergies seriously. In MCAS we don’t always know what the trigger will be - but when people do know what they’re allergic to - we need to be cautious and ensure they aren’t exposed

If we took allergies more seriously - Dominique would still be with us

For more on idiopathic anaphylaxis and the unique ways it can impact people with MCAS - check out my introduction to MCAS article: https://www.disabledginger.com/p/when-youre-allergic-to-everything

For more on Dominique’s death: https://www.usmagazine.com/celebrity-news/news/influencer-dominique-brown-dies-of-food-allergy-at-age-34/

If you’re dealing with Long Covid - there’s a chance you’re also dealing with MCAS and/or POTS/Dysautonomia.

They’re common comorbids and can have a devastating impact on quality of life.

New allergies? Alcohol intolerance? Dizziness? Fatigue? Fainting? Hives? Neuropathy? GI issues? Unexplained tachycardia or blood pressure swings?

These can all be caused by POTS, MCAS or a combination of both.

Mega thread of resources and guides below:

I was dealing with both of these conditions before the pandemic - and when the first Long Covid cases started popping up I remember thinking “I need to make sure I avoid Covid - it’s already causing POTS and MCAS so it might make mine worse”

I shielded as soon as I was able (and haven’t been unable to stop).

I had hope that given the sheer size of the problem - we would see accelerated research and have better treatments and/or a cure.

Instead we’ve seen an increase in dismissal and psychologizing - with many people reporting it’s HARDER to get a diagnosis now than before the pandemic.

We don’t have anything new to offer patients despite the huge increase in people with these conditions - and the few doctors willing to treat us have wait lists which have tripled in size.

Patients have to wait longer to see a doctor - and get shockingly little time with them.

Basically - we are truly on our own.

As a result patient support groups and message boards are increasingly becoming a lifeline for those newly diagnosed.

I remember how scared and lost I was at the beginning of my chronic illness journey - so I’ve spent the last few months writing guides to help patients dealing with MCAS & POTS.

My hope is they will serve as a resource for the newly diagnosed as well as for people who suspect they may be dealing with these conditions.

You will find explanations of how they impact the body, tips for obtaining diagnosis, treatment options, lifestyle adjustments and more.

I hate having to go searching for something when I’m feeling really sick - so I thought it might be helpful to include everything I’ve written in one mega thread people could bookmark or save.

With that - the guides! (One per post below)

#longcovid #pots #mcas #dysautonomia #covidisairborne # covidisnotover #sarscov2 #wearamask #MECFS #chronicillness #spoonie #pandemic

“Your test results are normal”

“You’re just anxious”

“You’re deconditioned”

“What do you want ME to do?”

“Have you tried worrying less?”

“It’s all in your head”

“Have you been drinking?”

POTS patients spend years hearing comments like this. 

They fight for diagnosis - only to be left disappointed by the lack of support 

I have a good friend who just went through this. Despite my telling her over and over that there’s no cure for POTS - she genuinely thought that she would be the exception. 

That if she could “just” get the diagnosis - she would be cured. 

She believed she wouldn’t end up like me.

When she was finally diagnosed - all the got was a beta blocker and instructions to check online for help with salt and fluids. 

She was told they would follow up in a year - and sent on her way. 

She was absolutely distraught. The reality that she wasn’t the “exception” crushed her.

Here’s the painful truth - very few people are the exception. 

Our medical system is great at handling acute issues - it’s woefully ill equipped for complex chronic ones. 

Often the best you will get is validation and a bandaid.

For those who’ve been healthy their entire life - this is soul destroying. 

It doesn’t matter how many times we tell them that there’s no fix - they do not believe us. 

They’re certain we just aren’t “trying hard enough.”

When they’re forced to confront the reality that we tried just as hard as they did - they’re scared. They feel abandoned. Hopeless. Cheated. 

Cheated out of the life they wanted for themselves. Scared to end up like those “other” people they thought they were better than.

There’s no easy solution to this - it takes time to come to terms with becoming disabled. You have to mourn the life you had and learn to adapt to your new reality. 

Most doctors don’t help patients with this. They diagnose and run. 

No one is coming to save us so we do whatever we can to save each other. 

Patients find support on social media and chronic illness message boards. They reach out to advocacy organizations. They research on their own. 

It takes a lot of spoons to try and learn how to live with chronic illness - and there’s no welcome guide. 

My series on POTS is an attempt to provide a resource to help patients quickly and easily access tips and tools to help them manage their new life as a disabled person. 

Part Three is everything I wish I had known when I was diagnosed - including tips on salt intake, compression stockings, medications, pots-proofing your home and more:

https://www.disabledginger.com/p/learning-to-live-horizontally-your