With chronic illness, I will always pay what I do today

The thing is that I’ve always been fine with things not being free. I have always appreciated the hard work and the very rewarding feeling of winning something, be it 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 age 14 and when I was 17 years old I had two jobs. I have always loved working in two jobs. I kept my pockets full, the bills paid and kept things from feeling mundane and boring. It was fun to leave a job for the day, change the “hats” and move to another role for my next job. Variety is the salt of life, right?

Nothing could have prepared me for the life that awaited me. Nothing could have prepared me to be one of the “chosen ones” to live a life of chronic pain and illness. I wish I had 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 on my days off and, instead, get up with the birds and venture to see the dawn in random and spontaneous adventures. I would not have stopped traveling. I would have been more “selfish” with my free time, so every minute was devoted to doing something I loved

Nothing could have prepared me for every ounce of energy I use for each day I borrow from each day. For the overwhelming exhaustion that I experience after each simple task, like getting dressed. (Which, certainly, does not usually happen, my pajamas are my best friends). Prepare a sandwich or even simply heat a soup. Take the dogs to the yard, even though I just stay in their place while they “do their job”. Putting a load of clothes. Discharge of the dishwasher. Executing the vacuum Throw random ingredients in a crockpot. Checking the mail. Even just sitting in the bathtub.
I remember that taking a long, warm bath was a luxury, something I appreciated and expected after a long day. Now? Now it’s a chore and I have to mentally prepare myself for the energy it will take to undress me, bathe me, dry me and dress me up again. And that’s not to mention the three days of the week when I wash my hair. I loved to wash my hair … the warm water around my head, weaving slowly, and how I got goosebumps when I touched each strand. I would lie with my whole body underwater, just with my face peeking out. Sometimes, I stayed like that until the water cooled and I had to drain half of it just to add more hot water. It was a delight! Even that simple pleasure has been stolen from me. Now, I sit in the tub, collapsed, my forehead resting on the edge,

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

I miss the movies. Once what I liked the most: he left. I miss the dirty, sticky floors and the way my shoes stick to spilled soft drinks as I walked down the hall. The shrill seats that make it impossible to feel comfortable. I received a slap in the face with the overwhelming smell of popcorn as soon as I got to the parking lot. How I permeated every fiber of my clothes and hair and it seemed to stay on my nose for hours after I left. I miss the noisy and annoying candy wrappings of the people behind me. The overvalued ticket. Or even just being able to pay for the expensive ticket. I have not been to a movie in … I do not know how long. Sometimes I used to go twice a day.

I miss pedicures with my friends. What used to be pampering and relaxing has now turned into a countdown of minutes until I can get up from my chair and go home because talking a little is exhausting and the lights make me feel nauseated. I miss having pretty fingers.

Nothing is free. Everything I do today is something I pay for tomorrow. As an energy loan. Anything (and I mean anything) that you do out of the ordinary is a loan with interest. A trip to the grocery store? Yes, that will cost me. A quick lunch outside? Yes, I’m going to pay for that. Until finally the debt is added to a balance so high that it is no longer worth borrowing. It simply is not worth the high payments anymore. Meet friends? No It will not happen. Grocery shopping? Now I do it online, so I do not have to leave my car (but do not forget: I still have to borrow the energy to download it when I get home). Gourmet kitchen that I once loved? No pot of clay.

It is an act of delicate balance every day, always remembering that even if I feel “good” today, I need to spend my energy with care because tomorrow already has his greedy hand open, waiting for payment. Sometimes I choose to deliberately try too hard and just deal with the Bank of Tomorrow when the time comes. Sometimes I laugh at how ridiculous it is that I have to plan ahead just to rest. How hilarious is that? Not funny “haha”, but rather “pathetic” funny.

I only think about what comes to mind on any given day: it’s okay, then … I need to go to the store, see the doctor, pick up recipes, throw dinner in the crockpot and then, at least, aspire. Oh I waited. Laundry. I guess that needs priority over the floors. Maybe I can do floors tomorrow. No, wait. I’ll have to take things easy tomorrow because I’m borrowing energy for today, so … OK. I have it! To stock. Doctor. Prescriptions Pot of clay. Laundry, but do not double today. Aspirate only on the ground floor. Yes. That should work. So, maybe, tomorrow I can fold that load in the dryer and we can eat the leftovers for dinner and rest for the rest of the day. If, according. I’ll try for that.

Then comes tomorrow. I quickly realized that I did not consider the “interest” of the loan. I knew I had borrowed energy, but I forgot that I would come with a headache, bodily pains, fatigue and debilitating vertigo. That load in the dryer might have to wait. “Hey,” I say to myself, “at least the clothes are clean.”


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