Do You See What I See?

We had a spectacular sunrise this morning. It was vibrant, and full of color. There were pinks, oranges and yellows; it was quite lovely. I decided to take a photograph of it, so I could share it with all of you.

This is what I got:

It's kind of dull, isn't it? I mean, I thought it was spectacular enough to take a picture and share it, and my picture turned out like that. I suppose if I enhance it,

the picture will look better, but you still won't see exactly what I saw (unless you were lucky enough to see it in person). Even if you were lucky enough to see it in person, you will get a different feeling or impression from it than I got.

For example, people driving eastbound toward the sunrise may be cursing the fact that the sun is in their eyes, blinding them. People driving westbound can only see the sunrise in their rear view mirrors. It might be distracting to them, or they might be wishing that they could get a better look at it. People driving north-south routes might be enjoying it, or they might be annoyed that the sun is in the very corner or their vision where sunglasses aren't. Some people driving in all directions might be as infatuated with it as I was.

Everyone has a different experience with a sunrise. It is the same for MS. And life.

I can explain MS to you. I can tell you what's happening medically, that the covering (myelin) of the nerves in my brain and spine is being eaten away by my own body, causing me to have all of the weird symptoms I have. The myelin is like the plastic outer coating on an electrical cord. Once that coating is removed in some spots, your cord will short out, maybe spark, but the result is it won't work the way it's supposed to.

I can explain what losing the myelin does to me. It causes fatigue, phantom feelings like wetness or hotness, tingling, memory problems, cognitive problems, tremors, pain, headaches, vision problems, heaviness in my limbs, itchiness, swallowing problems, and more.

You will comprehend all the words I've used. You understand it on an academic level. However, unless (Heaven forbid) you have MS, you won't truly understand how it feels. And that's perfectly fine. But please don't tell me you understand how I feel. You don't. You will try to compare something that happened to you in an effort to show me empathy. Please don't. You might tell me I could have it worse, and you'd be right, but that doesn't diminish my experience. Please resist the temptation. 

Additionally, if you do have MS, your experience will be different from mine. You will have different symptoms and different severity. We are lucky (sarcasm doesn't translate well into written words) to have a Snowflake Disease, meaning it's different for everyone.

So, we have an incurable disease, that no one knows why we have it, what causes it, and is different for everyone. Most autoimmune diseases are like that. And no one knows why they are different for everyone. But by your definition, we don't look sick!

This is what it looks like outside now:

Lightly snowing and gloomy.

This is exactly how autoimmune diseases work. You're all vibrant and sunny, then, in the blink of an eye, you're gloomy and unpleasant. Later, you might be back to being sunny, or you might turn into a blizzard, with everything shutting down. The fun (again, sarcasm) part is that you don't know how the day will unfold, if it will be the same tomorrow, or if you will be walking in a year.

This is why it's hard to make plans in advance, even throughout the day. I've given up making lists of what I want to accomplish today. Some days, it's drinking coffee and reading. Some days, I can manage to do some laundry. Some days, I can do a lot. Well, a lot for me, maybe not a lot for you. But, I have to be concerned whether I'll need to recover from days where I do a lot. Will I be worse for a few hours (days, weeks?) after pushing myself? Sometimes I will risk it, and sometimes I won't.

It can change in the blink of an eye.