A few months ago my step mom asked me what a normal day looks like for me. I asked her which kind and she became confused. I explained that I have three types of days in my life: a good day, a bad day, and a so/so day that’s in between. So I asked again which one she meant. She told me to explain whatever day I was having at that time. And so I did. The unfortunate side of that story is that as my disease progresses my bad days get worse and worse. A bad day five months ago is classified as a so/so day for me now. At the time that this conversation happened I was having a bad day. I look back on that now and yearn for having more days as light as that one, even though back then it was very hard. So today, May 11, 2015, I will describe, for at least now, a bad day.
3am: For a reason unknown to me my body has been waking up at this time for weeks. My cats know this, and are sitting by my side ready for their morning pets, and if I’m in a good mood, a treat.
I’m in pain. Full body, immense pain. My hands are swollen and puffy, barely strong enough to grip my comforter to pull off my body. A trip to the bathroom is likened to climbing Mount Everest. Every step sends pain shooting through my body, and the mere act of lowering myself onto the toilet seat is excruciating. I have on occasion fallen back asleep there while psyching myself up to make the trip back to bed, (only for a few minutes of course).
Pure exhaustion from this act usually helps me fall back asleep for awhile.
5am: Medicine and feeding time. My body always knows when it needs another dose and will wake me up to remind me. Overwhelming nausea takes hold of me but I know I must administer my medicine and let it sink in before I can allow my body the release it craves. 13. That’s the amount of pills I take in the beginning of each day. Some are for my arthritis, some are for pain, others are to handle my deficiencies, such as iron and calcium.
Once my medicinal feeding is over I move on to help my cats with theirs. One can of wet food to start their day, and if they were good in the night (no speed racing at 1am) they get a treat or two on top. When the three of us have been taken care of I fall back into bed daring to hope the meds kick in quickly today. I stay lying there until I’m sure the meds have hit my bloodstream and can hold back the nausea no longer. Another painful jaunt to the bathroom and I empty the contents of my stomach into the toilet. Dear Goddess I hope my medicine was fully absorbed. I know full well that I can’t double my dose even if it hadn’t.
7am: I know I should probably eat something. But the idea of food and water make me feel nauseated again. So I continue to lay in pain, maybe reading, or just staring at the ceiling contemplating my own mortality.
10am: I hobble down the stairs into the kitchen at last craving something for my belly. A hot cup of Irish Breakfast Tea, my New Zealand heritage poking out. My stomach growls and I know I should try to eat something but the idea of food repulses me, or maybe just the idea of knowing it will come up.
No matter how much pain I’m in or how badly I feel, my OCD is stronger, and I’ll end up painfully doing the dishes, or wiping down the counters, or sweeping the hardwood floors. If I have laundry in my basket I’ll go ahead and throw it in the washer, before returning to my bed, my prison.
11am: Time to throw up again. Might even fall asleep on the bathroom floor for a spell.
1pm: Afternoon meds. Blah, I hate when the Prednisone sticks to my tongue. That awful chalky bitterness makes me gag every time.
Depending on how bad the pain is I usually take an Epsom salt bath now. The salts help relax my painful flesh and gets me in a good sleeping mood. Now I can nap.
4pm: I’m hungry. A painful hobble down the stairs and into the kitchen. I cut up a bowl of strawberries with yogurt. Please let it stay down!
Easing myself onto the couch is more of a chore than an exercise in relaxation. And damn it, I’ve left my snack on the kitchen counter. I take a few moments to psyche myself into getting up again, the pain hot in my knees, as I try hard not to cry out. Once my snack is in hand I settle onto the couch and watch an episode or two of bad Netflix.
5pm: The pain has started to subside, it always does in the evening. I slip into some shoes and painfully walk around the block. I won’t be getting my six thousand steps in today, but at least I’m making an effort at all. Maybe I should attempt another bath?
After my walk I change my fur babies litter box, damn that’s an exhausting chore. The painful bending, kneeling to obtain all the clumps, sweeping the stay grains so they don’t crunch under foot. I’m almost ready for another nap.
The next few hours are filled with writing on my kindle, maybe getting small foot stretches in, and fighting the nausea. I will dose several times during all of these activities. The pain is so exhausting that I am always tired to some degree, also several of my medications cause drowsiness.
9pm: Thank goodness it’s finally time for my nightly medication. It also means my day is over and I can go to sleep for real. Maybe I won’t have insomnia in the middle of the night. Maybe I’ll wake up having a good day. Maybe I’ll wake to have found this all a dream. It’s a lot of maybes.
Maybe I have enough energy to throw up one last time.
Did I eat dinner today?