Spoonie Nurse.

I’m tired

I’m gay. I’m tired.

I texted one of my best friends this morning and asked, “Did you hear about Orlando?” because the first time I ever went to a gay club and pretended like I was “out” was with him when we were fresh out of high school. Out of all my friends, he’s probably spent the most time in gay clubs. Which means I’m more worried about him than about my other friends. So I texted him.

I’m tired.

They want people to give blood, but it’s gay people who need the blood and it’s gay people who can’t donate. But we’re in crisis mode! We’ll take your tainted gay blood for today only!

I’m tired.

I held hands with a man last week and thought, “Oh no, we’re in a small town in Utah and this is dangerous because we’re both gay,” before I remembered that he’s a guy and I’m a girl so no, it’s not dangerous. But the next time I hold hands with a girl, will someone see us and get mad enough to shoot 50 gay people? Will I feel responsible when I read the news? Will I feel like a danger to society for being gay?

I’m tired.

I went to Pride in Salt Lake City last weekend and I complained as I stood in line in the hot sun and I complained about the ticket prices and I complained about the festival being smaller than it was last year and I complained. When it was over, I was still alive. I’m still alive. I can’t believe I complained.

I’m tired.

Bury your gays. Currently on television, 4 percent of characters identify as LGBT. In 2016, about 40 percent of that 4 percent have already died. Yesterday, that might’ve been the issue I wanted to discuss. Yesterday, I might’ve been angry about fictional gays dying. Yesterday. Art imitates life, life imitates art, and I am tired.

I’m tired.

A year ago I put a rainbow flag around my shoulders and celebrated the legalization of gay marriage in the United States. A year ago there was no law banning transgender people from using the bathroom of their choosing. A year ago a man hadn’t shot 50 gay people dead because he saw two men kissing and got angry. “Now that gay marriage is legal, what more do you people want?” Well, I want to stay alive, for one thing.

I’m tired.

There aren’t gay coffee shops or gay restaurants – there are gay nightclubs. Gay nightclubs where LGBT people can meet other LGBT people and feel safe. I want to meet other LGBT people and make friends with LGBT people, but I also don’t want to die.

I’m tired.

My existence is controversial. Even though I’m out, I have to be careful about how “gay” I “act.” What happens if I’m at work and offend a customer? What happens if someone I know reads these words and decides to punish me for them? What happens if someone gets so angry about my sexuality that they shoot 50 people?

The Isolating Effect of Chronic Illness

Many people mention several negatives, side effects and draw backs of Chronic Illness. The one I find most often overlooked, both by professional literature and anecdotal evidence is the severe isolation and loneliness that can come with being sick. We are treated as less than equals because of our disability in so many ways. We need social interaction just as much, if not more than…

feeling so tired you might pass out

never feeling like you’ve slept - ever

forgetting what you’re going to say 100 times a day

being too tired to sleep

sleeping for 4/8/12 hours and feeling just as tired

needing a nap after being away for 3 hours

muscle aches

waking up feeling like you have the flu

waking up feeling like you’ve been hit by a freight train

your legs not wanting to work after walking up a small hill or the stairs

nausea

sensory overload, e.g. loud cafés, pubs or anywhere making you feel dizzy

anxiety

feb 29th is rare disease day.

ehlers danlos is one of those conditions. its painful, it can be isolating & its constantly misunderstood/mistreated.

its also really blinking hard to get treatment as its complicated.