The Discomfort of Disability

I have a very sensitive body.

Living with disabilities makes moving through the world an overwhelming and challenging experience. 

My body is affected in so many ways, and while I have found different methods of coping, it’s not easy.

Caring for my Skin

With any change in temperature or pressure, my face will swell. This is part of an autoimmune response that can occur depending on what my brain is doing with the hormones I’m putting into my body.

I’m taking estrogen, progesterone, and Synthroid, which is a synthetic hormone for my thyroid. 

As an ovary owner, your estrogen and progesterone start to deplete as you age, causing some really uncomfortable symptoms.

Before I started taking estrogen and progesterone, my hot flashes were almost constant and they could last for up to 30 minutes. The sweat was actually burning my skin, and that would cause really red, burning, itching, stinging, peeling rashes on my body.

Your skin should not burn you when you’re sweating. I went to see a dermatologist who laughed at me and told me, “Just don’t sweat.” 

Thanks for that great advice.

He suggested no exercise, no spicy foods, no alcohol, no fried foods, no sun, no heat, no hot showers, tubs, baths, or springs. No emotions, stress, or wool. No hot beverages, chocolate, or ginger. 

He did give me a prescription for a low dose of antibiotics and a special cream for lupus rash, but I was wary about using them.

Everything I’ve read about this cream scares me because it can cause a reaction where your skin sloughs right off of your body. I've had Stevens Johnson's syndrome before, with a rash covering over 85% of my body. It's typically fatal, and after the alarming experience of watching nurses and doctors rush toward me in the ER, I'm extremely fortunate to have survived.

To avoid having to use that cream, I use unscented baby soap and moisturizer, and throughout the winter, I go through a 500ml tub of moisturizing cream every two weeks. There’s lotion and vaseline that goes on top of that - all just to care for my skin.

I still have rash spots that regularly become inflamed and infected, but I’m doing my best to care for my skin with a routine that kind of works for me.

Keeping my Balance

I fall a lot with my disability, and we’ve been trying over the last decade to figure out why. 

It causes some serious disorientation because one second, I’ll feel completely fine and then the next second, the world goes sideways. There doesn’t seem to be a particular trigger either. It happens whether I’m sitting or standing. Even at night, when I’m in bed.

Recently, I was trying to fall asleep when the room started tumbling end over end. I could no longer tell where UP was, and the motion sickness from it made me gag.

I’ve gotten checked for blood pressure and heart issues, but there are none. In fact, my doctor said that I have a beautiful heart, which was nice to hear.

Because the cause of this falling is unclear, we’re not sure how to go about treating it. In the meantime, I do my best to catch it before it happens.

While my studio only has four steps, leading from the accessibility bridge to the door, I’ve fallen down them hundreds of times. Sometimes I open the door to go down the stairs and as I look down, I’ll realize that if I even try, I’ll fall. And I have to wait it out. 

I don’t always notice when I’m going to fall.

I’ve seen an internist and they said I should do less. Not only is that advice vague and unhelpful, I’m already doing as little as possible. 

What’s the Solution?

When you only get 10 minutes with your doctor once a month - sometimes even less frequent - it makes it hard to check in about everything that’s going on with me.

Almost every doctor or specialist wants me to lose weight, of course. But in the same breath, they’re telling me not to exercise so that I don’t give myself a rash from the sweat or trigger a fall from the exertion.

Fortunately, taking my hormones and menopause support supplements really help with the sweat.

It’s frustrating to be so uncomfortable. It can be really overwhelming and exhausting.

Between my skincare and my dental hygiene, I feel like I spend so much time just getting ready to face the day..

Throughout my life, taking care of my body wasn’t a priority unless it was a punishment. Now, I’m doing my best to invest in self-care and in myself.