With Chronic Illness, I Will Always Pay Tomorrow for What I Do Today

Nothing is free.

How many times have we all heard that one? At 41 years old, I certainly stopped counting long ago.

The thing is, I’ve always been OK with things not being free. I have always appreciated hard work and the deeply rewarding feeling of earning something, whether it be a paycheck or a simple “thank you.” There’s something so satisfying about a proverbial pat on the back for a job well done, whatever it may be. I started working at 14 years old and by the time I was 17, I had two jobs. I always loved working two jobs. It kept my pockets full, bills paid and prevented things from feeling mundane and boring. It was fun to leave one job for the day, change “hats” and slip into another role for my next job. Variety is the spice of life, right?

Nothing could have ever prepared me for the life that was waiting for me. Nothing could have ever prepared me for being one of the “chosen” to live a life of chronic pain and illness. I wish I’d known. I would have done more. I would have found more ways to enjoy good health while I had it. I would have chosen not to sleep in on my days off and, instead, get up with the birds and venture out to watch the sunrise in random, spontaneous adventures. I wouldn’t have put off traveling. I would have been more “selfish” with my free time so that every minute was spent doing something that I loved.

No, nothing could have prepared me for this.

Nothing could have prepared me for every single ounce of energy I use for my every today being borrowed from my every tomorrow. For the overwhelming exhaustion I experience after every simple task, like getting dressed. (Which, admittedly, usually doesn’t happen. My pajamas are my best friends.) Making a sandwich or even just warming up soup. Taking the dogs out to the yard, even though I just stand in place as they “do their business.” Putting in a load of laundry. Unloading the dishwasher. Running the vacuum. Throwing random ingredients into a crockpot. Checking the mail. Even just sitting in the bathtub.

I remember when taking a long, warm bath was a luxury – something I cherished and looked forward to after a long day. Now? Now it is a chore and I have to mentally prepare myself for the energy it will require to get undressed, bathe, dry off and get “dressed” again. And that’s not even to mention the three days a week I wash my hair. I used to love washing my hair…the warm water around my head, slowly weaving through, and how I would get goosebumps as it touched every strand. I would lay with my whole body under the water, with only my face peeking out. Sometimes, I would stay that way until the water turned cold and I had to drain half just to add more hot water. It was such a treat! Even that simple pleasure has been stolen from me. Now, I sit in the tub, slumped over, forehead leaning on the edge, just trying to work up the energy to start washing.

Now, bath time is…depressing. For me, it’s a stark reminder of how different life is. It serves as a sort of scale that measures my “before this” and “after this.” Life before and life now.

I miss my baths.

I miss the movies. My once favorite thing to do: gone. I miss the dirty, sticky floors and the way my shoes would stick to spilled soda as I walked down the aisle. The squeaky seats that make it impossible to get comfortable. Being slapped in the face with the overwhelming smell of popcorn as soon as I reached the parking lot. How it permeated every fiber of clothing and hair and seemed to linger in my nostrils for hours after leaving. I miss the noisy and annoying candy wrappers of the people behind me. The overpriced ticket. Or even just being able to afford the overpriced ticket. I haven’t been to a movie in…I don’t know how long. I used to sometimes go twice in a day.

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I miss pedicures with my girlfriends. What was once pampering and relaxing has now become a countdown of minutes until I can get out of that chair and get back home because small talk is exhausting and the lights are making me feel nauseous. I miss having pretty toes.

Nothing is free. Every single thing I do today is something I pay for tomorrow. Like an energy loan. Anything (and I mean anything) that I do out of the ordinary is a loan with interest.

A trip to the grocery store? Yeah, that’s going to cost me. A quick lunch out? Yep, I’m going to pay for that one. Until finally the debt adds up to such a high balance that it’s no longer worth borrowing. It’s just not worth the high payments anymore. Get together with friends? Nope. Not going to happen. Grocery shopping? I now do that online so I am not forced to get out of my car (but don’t forget: I still have to borrow the energy to unload it all when I get home). Gourmet cooking that I once loved? Nope. Crockpot.

It’s a delicate balancing act every day, always remembering that even if I feel “good” today, I need to spend my energy carefully because tomorrow already has its greedy hand opened, waiting for payment. Sometimes I choose to purposely push myself too hard and just deal with the Bank of Tomorrow when it comes. Sometimes I laugh to myself at how utterly ridiculous it is that I have to plan ahead just to rest. How hilarious is that? Not “haha” funny, but more like “pathetic” funny.

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Just thinking about what goes through my mind on any given day: OK, so…I need to go to the store, see the doctor, pick up prescriptions, throw dinner in the crockpot and then hopefully at least vacuum. Oh. Wait. Laundry. I guess that needs priority over the floors. Maybe I can do floors tomorrow. Wait, no. I will need to take it easy tomorrow because I’m borrowing energy for today, so…OK. I’ve got it! Store. Doctor. Prescriptions. Crockpot. Laundry, but don’t fold today. Vacuum only downstairs. Yes. That should work. Then, maybe, tomorrow I can fold that load in the dryer and we can just have leftovers for dinner and I can rest for the remainder of the day. Yes. OK. I’ll try for that. All I have to do now is fight my way through today’s list and tomorrow I can rest.

Then tomorrow comes. I quickly realize that I didn’t account for the “interest” on the loan. I knew I had borrowed energy but forgot that it would come with a headache, body aches, debilitating fatigue and vertigo. That load in the dryer might have to wait. “Hey,” I tell myself, “at least the clothes are clean.”

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Every single thing I do is a bargain. A deal with Tomorrow and with myself. I no longer see Tomorrow as just a day of the week. It’s become its own entity. A “thing” I have to deal with and argue with and answer to. Tomorrow can be cruel and greedy and demanding and selfish. Tomorrow doesn’t care if it makes me look lazy. Tomorrow doesn’t care if it makes others judge me. Tomorrow doesn’t care if I don’t look sick but am dying inside. It doesn’t care about the guilt and the shame.

Tomorrow just wants to be paid.

What I do today, I borrow from Tomorrow. It’s like a mob boss. If I don’t pay up, it sends its cronies to rough me up.

Nothing in my today is free.

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