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Ari in bed

Ari in bed

A Day-in-the-Life in Ari's Words 

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Ari—My faith is the only thing that sustains me.

At least nine out of ten times I wake up to start my day, it is after an exhausting, and not so restorative, night of little sleep. Sleep is almost always an enormous struggle to obtain, and I cannot remember the last time I woke up feeling rested, or with a significant amount of energy – most likely not once in the last year or two. At 6:00am, my mother wakes me and helps to administer my I.V. antibiotic that must be taken at 6:00am, 2:00pm, and 10:00pm sharp. After my medicine, I try my hardest to get additional sleep.

I usually spend two to four hours after I have awaken to start the day (often around 7:00 -9:00 am), resting and waiting for the strength to roll my body over and push it up and out of bed (around 9:00am – 1:00pm). The next concern is usually food – needed when I rise in order to take my medications and supplements. It is a complicated regime, with some taken one time a day, and others two or three. Some cannot be taken together, some must be on an empty stomach and still others must be taken with food.

In order to take some of my antibiotics, I need a substantial meal, often hard to get down, in order to avoid vomiting. Sufficiently substantial meals are always difficult for me to get due to the required preparation and the struggle I sometimes face even with heating prepared food. On difficult days, standing for any length of time in the kitchen is too difficult. When there is someone to prepare food, which is infrequent, this daily hurdle is avoided. Most of the time, I go hours without eating much, unable to really think clearly or exert myself by standing, resting, watching TV., reading an article, listening to music. When I am without help and unable to prepare food, my medicine is delayed by necessity, and then makes the day more difficult.

In late afternoon and early evening I am typically able to function at a level enabling me to make small accomplishments – calling a doctor, bringing in the mail, going to the grocery store, doing some laundry, meeting with my home teacher to work on math and current events, or making myself a snack. On a good day (which are not predictable), I am able to walk the dog or wash some dishes, or taking a scenic drive when there is a car available. All day, I am battling extremely poor short-term memory, and fighting to keep my balance as I move –I struggle with not being able to achieve the larger, more important things.

Later in the day, I must take my IV antibiotic, which is an IV push administered through a picc line which was surgically implanted in my arm and delivers the medication near my heart through a tube.

Around this part of my day, meal searching begins, depending on my energy and ability to stand and effectively prepare something. While there is always plenty of food in the house, the condition of my stomach may limit what I feel able to eat. As we need to eat healthy foods, packaged or pre-prepared food is rarely an option. If I eat, I am able to promptly take the required antibiotics and supplements with no problems. On a typical day, with my mom at work, and my sister similarly sick, this can be an exasperating and nearly impossible task. To need food, for nourishment, minimal energy, and taking antibiotics which are presently my only hope for physical healing from Lyme disease, but be unable to prepare food that is available is truly depressing. Sometimes when I am particularly ill, and my need of a meal is great (and I am home without help), I am able to expend the energy to make something but am then made more ill and unable to use the rest of my day/evening.

On a favorable evening, in which my mom gets home before dark, I like to spend time with my mother and sister; talking about the day's news, our dogs, or watching American Idol or Dr. Phil as mom works on household chores or rests from a particularly long day of work and errands to keep our family afloat.

In the late evening, my day is coming to a close. I must administer my third round of IV antibiotics (in addition to one oral antibiotic at this time), and try to keep myself hopeful and optimistic despite failed attempts to accomplish, and an overwhelming sense of each day being a waste caused by my physical limitations from Lyme and prolonged toxic mold exposure. I try to begin preparing for and going to bed between 9:30pm and 11:00pm. Often, with sleep aids, I fall asleep around 12:30am-2:00am – other days between 2:00-6:00am. Regardless of my dedication to and success with sleep hygiene, I unable to sleep deeply and no longer experience waking up with a feeling of being rested. The feeling of being rested and ready to go is a distant memory from my childhood.

The monotony and the isolation – the deferment of my dreams and aspirations, well, that is the worst. My faith is the only thing that sustains me.