The Reality of a Full-time Patient

Yesterday started like almost every other day. I woke up around 6:30am, cringing before I even opened my eyes. The pain wasn’t too bad, but it was definitely there. Probably coming in at a 5/10, if I had to gauge it.
I stretched. Wiggling my fingers and toes, twisting my torso from right to left, attempting to pinpoint exactly where the pain was at its strongest, and where it’s weakest point was as well. Knees, it was definitely in my knees. Feet, yep, they were swollen too. Fingers, however, weren’t as bad as usual. All in all, there was a chance I might be able to have an okay day.
In fact, by the time I’d had a shower, got dressed, had my coffee, and even put a bit of makeup on, I was feeling pretty good. Or at least good by my standards.

I had plans to meet my mom in town if my body was feeling up to it, and since my limbs seemed on board with the idea of leaving the confines of my bed, I left the house eagerly by late morning.
It was when I was standing on the curb at the crosswalk, waiting for the light to change, that I realized this act felt very similar to when I used to head to work. Bag under my arm, ear buds in my ears playing my latest favorite Pandora playlist, pep in my step… I mean to any passerby I probably looked like a regular woman.

When was the last time I’d felt like this? When was the last time I felt any semblance of normalcy in my life?

I traversed two blocks to the bus stop, where I boarded an express bus headed into downtown. I flashed my pass to the bus driver who gave me a familiar look before waving me past. I knew the look all too well, as I’d seen it more often than not since acquiring my disability bus pass a year and a half before. It was the “I wonder how she got that pass?” look. A look that was often also seen on the faces of other bus riders when I took a seat in the “elderly and disabled” section. Though that look was usually accompanied with a scornful frown, or an exasperated sigh, and a rolling of the eye that was supposed to convey their outrage that a young woman like myself would dare sit in their section.

Yesterday, however, I was feeling peppy enough to walk past the disapproving eyes of the elderly, and secured myself a primo seat in the back of the bus. And there I stayed for 21 minutes until I reached my destination. And once there, I hopped out of my seat, a little painfully I might add, and traded the cold air of the bus for the sticky, humid air of Downtown Honolulu.

Instantly feeling hot and uncomfortable, I walked across the street and into my favorite discount store, eager to browse the racks and abuse their free air conditioning. It was only midday by this point, but I couldn’t help feeling a bit fatigued. Sure, I’d been awake since the early morning, but I hadn’t done much in that time, had I? Just slowly gotten ready for the day, had a coffee, and caught a bus…so why was I so tired?

I called my mom to get an eta on her whereabouts, and after figuring out that I had about thirty minutes to spare, I headed to my favorite local coffee shop for a much needed latte. It was only a four block walk from the discount store I’d been in, but gosh did it feel longer? And the sun, the hot, stifling summer sun…there was no relief from its piercing rays. Why weren’t there any benches or places to sit downtown? Not one shaded park bench or concrete slabs to lean against so one might catch their breath or hide from the blinding light. When did the town get stingy on places to sit?

By the time I’d reached Brue, my favorite coffee bar, I felt weak in the knees, and not in a romantic swoon kind of way. My feet throbbed, my mouth was as dry as desert, and I was “sweating bullets” as my friend liked to coin it. I felt hot, dizzy, and exhausted. Was it always this hot? Was I just out of exercise, or did those city blocks seem much larger than before?

However, I was much happier once inside the doors of my beloved caffeine haven. Recognizing me, the barista started my order before I’d even reached the counter, and after delighting in the fact that I’d finally filled up my stamp card, meaning that my next cup was free, I settled down to enjoy my favorite latte. 

By the time I met up with my mom I was feeling much better, caffeine always has that affect on me, and looked forward to spending some quality mother/daughter time. Preferably from the comfort of her air conditioned Mercedes. Unfortunately, she needed to make a quick 30-min stop at the local tire shop to get her back tires replaced, first. Assuring me it would be quick, she had an appointment afterall, we headed to the (thankfully) cool waiting room of the establishment, to wait.

Tick. Tock.

I took my midday medications with a sip of water from the community cooler. Thank goodness the water was cold as ice.

Tick. Tock.

Customers walked in. Customers walked out. My knees started to ache, swelling up from the heat, and stiffening from sitting on a hard chair for too long.

I dozed once, twice, three times.

Tick. Tock.

My fingers started to swell, and my feet felt tight against the restraints of my slipper straps. Gosh it was hot, why was it so hot.. I left the no longer cool waiting room and took a lap around the parking lot, trying to figure out what was taking so long with our car. A glance at my iPhone clock and I cringed, realizing we’d already been there for an hour. So much for it taking no time at all with a scheduled appointment…

By the time they relinquishedour car back to us it had been two and a half hours! My entire body by this point was begging to be put out of its misery. I’d only been sitting in a slightly air conditioned room and yet everything ached like I’d just run a marathon. At what point had my flare started? I didn’t even know. All I knew was how I felt now- hot, sweaty, sticky, and exhausted, with a dull yet painful ache widespread throughout my limbs.  Because of our unfortunate change of plans for the day, mom and I grabbed a quick bite (as we’d missed lunchtime while sitting in tire shop hell), and then I headed home for what I knew was going to be a hard nap.

Crawling up onto my bed was brutal. My limbs weren’t impressed with every way I tried to get comfortable. They were too tight, too achey, and the exhaustion didn’t help as I’d have liked. It took too long for me to find a comfortable position in which to arrange my tired and sore body parts. Finally, after what seemed like hours, fatigue ruled that my body was going to sleep and that was final!

 

Late last night I thought back through the day, and I pondered at how different my life was now compared to when I used to work. When I was employed I used to rise around 7am and reluctantly head into the office. I’d usually work an 8-9 hour day, with only one or two quick breaks where I’d run out for some coffee or a snack. I didn’t need naps, nor did I feel the weather temperatures as much. I’d come home, and while on the rare occasion I’d take a nap, it would only be for a thirty minute stretch. I always had so much to do after work, like make dinner, or see a movie with friends.

Then I thought back onto the day I’d just lived. Sure, it may have started at a similar time, but the activities and feelings were vastly different. I was no longer a “Working Professional”. I didn’t have a 9-5, and a lunch break, and frequent trips to the water cooler.

I was, and am, a full-time patient. 

My life is ruled by medication schedules now. I get tired from riding the bus, and walking a few city blocks. I fall asleep in waiting rooms, and get hot flashes in already hot summer weather. It’s been like this for two years!

And yet, somehow, I’m surprised by it every single day. My reality is that I’m a full time patient. And now my job is to learn to accept that.

 

 

 

Thank you for reading my blog. If you’d like to help support or contribute to my life resources, you can visit my webpage at:

http://www.gofundme.com/sixthousandsteps

 

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About sixthousandsteps

In March of 2013, I was diagnosed with chronic Rheumatoid Arthritis and was told my disease was very aggressive. Every day since then has been an ongoing struggle and life lesson on how to stay positive and keep fighting. This blog is a glimpse of how it all came to be, and who knows what the future holds.

Posted on June 23, 2016, in The Journey and tagged , , , , , , . Bookmark the permalink. Leave a comment.

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