[a moment] of explanation

[moment 218]

How can you do all of these things if you're so sick? 

A message came via social media from an account with no content questioning how I could possibly write about living with chronic illness and how ill I've become and having a compromised immune system while at the same time posting about work we're doing on our house or outings we've taken and all the things I post about on social media. It questioned how I could say that my brain isn't functioning well and my ability to communicate is crap if I somehow am able to write blog posts...as well as how I could volunteer for one organization but not another; go to one place but not another; and the list goes on.

I didn't dignify the message with a response and blocked the user. But it got me thinking. Perhaps my life does look like a huge contradiction from the outside. 

So perhaps I should explain just a little bit - if nothing else so I have a place to direct people who question the veracity of what I post online. 

I am in pain every moment of every day.

I have reduced sensation and weakness on the left side of my body.

About half the time, I have a migraine - and I get several types of migraines, one of which mimics a stroke.

Because of the hemiplegic migraines, I have difficulty processing language - it takes me longer to process what people are saying and even longer to formulate a verbal response. Writing works better, especially if I have time to read and process and respond in writing and re-write (and edit, and re-write).

I have a movement disorder which greatly interferes with my sleep, so I live in a constant state of sleep deprivation.

I gained a lot of weight over the past two years due to untreated Cushings sydrome and taking a bunch of medications that promote weight gain. I am in the process of weaning down on steroids (which I need to take to sustain life), which makes me lethargic as my body gets used to the lower dose and am taking a medication to help me lose weight, which makes me continuously nauseated. 

So basically I'm always in pain, always feel ill, and have little to no energy. 

But that doesn't mean I can't experience joy and happiness and act as if everything is fine. If there's one thing people living with chronic illness learn to do well is act as if everything is fine. 

I now volunteer with an organization that allows me to do most of what I need to do from the comfort of my bed if necessary, and lets me pick when I want to and can do things that require interactions with others. 

My family works on projects around the house - all of us. And they help me when we're out and about should I need to be pushed in my wheelchair or need to pace myself and are understanding when I need to take a break on a bench or in my van.

When I go out to a restaurant (which isn't often at all), it's one where I'm sure there will only be a couple other patrons, if any, at the time we go if the seating is indoors, or where we can more safely eat outdoors. 

When we go on outings, they're usually to venues that are mostly outdoors, and I avoid the indoor spaces whenever possible. We rent private movie theaters. We have friends who test for covid before visiting or before we visit them. We go to plays in theaters that require all to wear masks - and again, we go incredibly infrequently. 

I always wear an N95 mask when around people in public. I take naps. I cancel plans when I just can't function. And I try to have a positive attitude and at the very least be pleasant when interacting with others.

When I'm tubing on a river or crutching around an aquarium, I'm having a good time - usually - despite the pain and exhaustion. When I write a blog post, it can take days. (I started this blog post months ago!) I cancel more plans than I keep. I ask people to be understanding when I'm having difficulty communicating. 

I think this is why people don't understand what my life is - that I can go and be and do, but that it looks and feels different for me. People tend to look at things through the lens of their own lives, not the lens of disability.