The Choices We Must Make

Lupus is as much a daily roll of the dice, as it is an incurable disease.

Each day I wake up to a new reality. I might feel somewhat decent, or I might awaken racked with pain. I might be almost pain free, but feel desperately tired. I might not have slept at all, or I could be waking from a 15-hour-long sleep marathon.

There is no way to predict what tomorrow will bring.

This forces me to try to avoid any planning ahead, as Lupus loves nothing more than to make me a liar, and “pushing through it” is always an exceptionally bad idea.

And so, I make choices that the healthy would never have to consider.

The Basics

One of the most basic decisions I face nearly every day, is whether I can afford to expend energy on taking a shower.

I consider whether I need to go out into the world? If wearing a hat would be enough to satisfy societal norms, or will I be dealing more intimately with humanity than a simple in and out purchase?

How much time will I have to recover from taking a shower, before I must get dressed? How much time will I have to recover from getting dressed, before I need to leave the house? Does the place I’m going to require a lot of walking and, if so, do they provide electric scooters? Will there be someone back home to help me unload?

Is there anything else that I need to do that day? Can I get it all done in a single trip? How many times will I need to get in and out of the car?

Will I need to handle anything heavier than, say, thirty pounds? For how long?

All of these things must be considered before I subject myself to the rigors of taking a shower.

Though, to be honest, if I don’t have to go anywhere, I tend to skip the shower. It’s difficult to add exhaustion and pain to my day, especially when I know I won’t be encountering any strangers.

Not to say that I stumble around in a state of near constant filth, but my 50 years of daily cleansing are in my past for good. Many days, it is either feeling clean, or cleaning the house, that comprise my personal conundrum.

Sadly, all but the most basic hygiene tends to take a back seat to trying to control my space. On those days that I simply must be sparkling clean, when I will be in close contact with others, I just suck it up and accept that I might be bedridden part of the following day.

Shrinky-Dink Dreams

Oh, how I loathe to break my word.

I, like most from my generation, and those that came before, consider my word as my bond. I spent most of my life knowing that, if I said it, it will be. Then it became, if I say it, it will be, or you’ll know why not.

Now, if I say it, it’s tantamount to fantasizing. Maybe it’ll be? Someday? But probably not. My boys have gotten used to it, which breaks my heart. That’s not the man I’ve shown them while they grew, and not the men I expect them to be. It is, however, who I’ve become.

I lay, most nights, thinking of projects; designing them, looking for potential fail points, improving them, gathering materials from the ether, pricing them out, and settling on exactly how to go about getting it all done. All of it in my head. It’s my version of counting sheep.

These aren’t small projects, either.

How to turn my useless upstairs rooms (neither my wife nor I go up there more than three times a year) into a separate apartment space is a favorite.

I figure out how to close it off from the rest of the house, and build a carport with stairs on the backside, that lead to the top. The side window would be changed into a private entryway. I even figure out where, and how, to create a small kitchen and full bath, up there. It’s all in my head, and that’s where it’s going to stay. Why? Because I am physically incapable of doing any of it and too damned broken to ever earn enough to pay a contractor.

There is a wall I built to turn the living room into two spaces. This was needed because my wife is disabled, and we had to have a downstairs bedroom. Five years later, almost six, and it has yet to be finished enough for paint. Early on, I said I’d rather light it on fire than let someone else finish something I started.

I’ve since mellowed. If I had the money, I’d hire someone tomorrow and smile as I watched.

I’ve learned to shrink my dreams.

My latest one is to modify my wife’s light up ashtray to use an adapter, instead of those godawful expensive coin batteries that last all of 2 hours. Can I do it? Yup. Will I do it? Yup. And it’ll bring me some small satisfaction, too.

But, my god, it’s such a tiny little dream.

Smaller Things

There are smaller decisions that folks with Lupus are forced to make every day. The following are examples I received from other men with Lupus. I can relate to most of them, though anything work related is now in my past.

· Whether to tie my shoes or button my shirt. (Yes, this can be an either/or decision)

· Sitting up straight at a table for an hour, knowing it will later cost you sleep (from spasms caused by muscle fatigue)

· Giving in to fatigue or spending time with family and friends, knowing that there will be a heavy price to pay later

· Whether it is worth the effort to take off my socks

· Sucking it up and going to work, and risk being shut down for days, or risk calling off and hope it’s just this one bad day

· Keeping still for 15 minutes or more, just to gather enough inertia to get up and go to bed

· Listening to your body, or following through on a promise, because you are sick of letting people down

As your choices shrink, so does your world.

I promise you, none of us prefer it this way. We all want to go out, see family, see friends, build things, fix things, work our asses off, help others, and keep our word.

We want to live.

We want to BE!

Never lose sight of that.

The person in your life who has changed so much since their diagnosis? It isn’t by choice. They aren’t deciding not to fight. What you can’t see, is that they are fighting. Every moment of every day.

The fight, is making those choices, when it would be so much easier to choose nothing.

The fight, is having the guts to make those promises, never knowing if this insidious disease will make you a liar yet again.

The fight, is when we do what appears to be the bare minimum, knowing that later there will be unbelievable pain (literally from head-to-toe), soul crushing fatigue, and maybe some seizures thrown in just for giggles.

The fight, my friends, is every single action we take, no matter how minor. Because there will always be a price to pay later. Always.

If someone you know has Lupus, or Fibromyalgia, or any one of the myriad auto-immune diseases that don’t have the courtesy to be visible, please keep my words in your heart.

Everything we do is fighting. Every act, every moment, until our final breath, is a refusal to give in.

Respect that.

for more on my life with Lupus, read Lupus is a Thief