Category Archives: Being a Spoonie

The Spoonie Life Is Far From Glamorous

Being a Spoonie

Travel is in my blood. I’m meant to be on the road, or by the beach, or exploring the city. I’m supposed to be travelling the world, making it more accessible for people like me, who have disabilities and itchy feet.

But I’m sick and broke and stuck at home and in doctors’ offices.

My disability has taken everything from me: My health, my travel, my career, and sometimes even my hope in the future.

Next month, I was supposed to be headed to Dallas for a mental health conference. The plan was to soak up as much Texas culture as I could (I’ve never been west of Nashville), learn how to better cope with my Trichotillomania, and write about how to navigate both the Southwest and BFRBs with a disability.

But with $7 in the bank and numerous appointments with a hematologist, an endocrinologist, a gastroenterologist, a pharmacy and an MRI machine, it’s just not going to happen. Not this year.

Don’t get me wrong: I’m grateful to have seen all the places I’ve seen. I’m grateful for what little health I have.  I’m grateful that things won’t be this rough forever. But it’s hard to be grateful at all when you’re being stuck with needles, swallowing pill after pill, hobbling along with a cane when you’d rather be working diligently at your dream job, helping people and making a living.

This is not what I expected my life to look like.

Tips for Spoonies with Colds

Being a Spoonie, ,
tips for spoonies with colds
Dealing with day to day chronic pain is frustrating enough; having a cold on top of it is just brutal. But it doesn’t have to totally suck!

Netflix is your friend. Take the day off and binge watch House or a travel documentary or something. You deserve a break.

Elevate your head. You’ll breathe easier. Literally.

Drink something fizzy and low in caffeine. I like Sprite Zero, because it’s sugar free and delicious, and excellent for settling your stomach and keeping you hydrated.

If you have a headache, take Mersyndol. I carry a few tablets with me everywhere because it works so well. It’s stronger than regular Tylenol, but doesn’t require a prescription. A single tablet is usually enough.

Don’t push yourself to do anything. You need your rest.

This is seemingly obvious, but keep Kleenex near your bed. When you’re already lacking energy, the last thing you want to do is stumble to the bathroom in search of something to blow your nose with!

Buy a Vicks VapoInhaler. I don’t know what I would have done without this thing when I had a cold earlier this month. The scent is soothing and is a nasal decongestant.

Being Jewish, I feel like it’s my duty to preach about the healing powers of matzoh ball soup. Seriously, it’s magical.

How do you take care of yourself when you catch cold?

Image is a get well card you can buy here.

On Being an Expert

Being a Spoonie, Business
I just read a post from Braid Creative that really resonated with me. It said,
“Experts don’t have to prove their worth by telling you how hard they
worked on your project or how long they’ve been in the game. Experts
never displace blame or require validation. Experts just do what they do
what they do best – whether that’s snapping a photo, writing a book,
developing an ECourse, designing your logo, or consulting you through
next steps – with grace. Experts make you feel safe and reassured
through the process. And they make it look so easy that you almost
consider that you could do it yourself. And that’s how they know they’ve
done a good job”.
As a solopreneur/ entrepreneur, you have to have some kind of expertise in your niche. A claim to fame, if you will. So what’s yours?
As spoonies, being an expert might not be effortless, per se. After all, measuring our energy levels and acting accordingly takes dedication and commitment. Focusing on a task, sitting at your computer or behind your camera or on a Skype call with clients can be physically painful. Existing is difficult, so of course work can be, too.
But being an expert should be effortless. You won’t know all there is to know, especially right away. Gigs won’t fall into your lap. You won’t snap your fingers and fill a wall with awards. But the expertise itself; learning your craft, eating, breathing, sleeping it? That will be painless. Because you love it and you are good at it.

What They Don’t Understand [As Told By Superstars in Gifs]

Being a Digital Nomad, Being a Spoonie

It takes hard work, just to stay afloat.

Running a business is hard. Having a disability is hard. Travelling while working or having a serious illness is hard. Doing all of the above at once? Nearly unheard of.

And yet, some of us do it.

It’s not always Instagram-worthy. But we trudge through the bad pain days, the emotionally and physically exhausting days knowing that the freedom of being a digital nomad and the satisfaction of fighting our illnesses is so worth it.

In the end, maybe the people who don’t understand (or don’t care to understand), the naysayers, the ableists and the haters don’t matter. Seeing the world and doing what you love? That’s what counts.