In the years before I got sick, I used to take a lot for granted. That’s really our burden, as victims of autoimmune diseases, the memory of the lives we once lived and that we may never live again. The ease of going to the bathroom without requiring an aid to hold on to, being able to make plans weeks in advance without the possibility of cancellation, feeling like the worst pain in the world is stubbing your toe on the doorjam to your room… Little things that seem insignificant, that now rule our existence.
I’ve coped with a lot over the last three years. To this day my doctors still marvel at how I can compartmentalize my pain, my anger, my frustration, and just push through to overcome the odds. ‘How is it that she can be so optimistic all the time?’, they must muse. Well, like I’ve stated before, it’s not so much that I’m optimistic, I just don’t want to accept defeat and be a depressed blob. Even as my disease worsens, and the pain grows and intensifies to the point where it’s almost too much for even my optimistic brain to comprehend, I don’t let that push me into the pit of despair that’s lined with empty cartons of Haagen Daaz and an a never ending script for Xanax. I try to make the most of every day that I’m given. But even the strongest of wills can have truly shitty days.
In the past, a crappy day usually meant a larger glass of wine that evening. If I’d messed up a deadline at work, got a talking to, stubbed my toe on the evil corner of my coffee table, or missed my bus.. sure it would suck, but I’d get over it pretty quick. I’d work harder the next day, or I’d swallow my pride and put on a smile, I’d kick the table back (and lose again, because who am I kidding?), and I’d bitch a bit before waiting another 20 mins for my next ride. The point is I’d deal. Cause what else are you going to do? Nothing. You either solve the problem and get on with your life, or you don’t and bitch about it some more, but then solve the problem cause you’re not an idiot.
But now in the future, those options aren’t so crystal clear. Now I can’t always just pick right up and move on. Some times solving the problem is a whole hell of a lot harder, not to mention painful as f*ck.
Take today for example… I woke up with a pretty bad flare in my hands and knees, after having had an even worse flare in my feet the night before. I knew the best course of action would be to stay at home, apply heat and ice, rest, take my meds, rest some more, and you know basically recooperate. Except that today my dad asked me to go see a movie. I’d been hermitting as of late, cancelling plans and opting to stay in bed with a hot water bottle and Netflix, rather than join the land of the living. So because of this I dragged my tired butt out of bed and into a 34 minute scalding hot shower (the best way to loosen joints fast), and then into the most slimming outfit I had that was clean (my body shaming issues with my family are for another story and another day).
I made it through a mediocre movie at the local Cineplex (for those avid moviegoers like myself-stay away from Gods of Egypt), and even through a solid hour of shopping at a store that was closing for good. As much of a snob as I used to be in the days where I made good money at my job, even I couldn’t resist a going out of business sale at Kmart. $4 bras?! Are you serious? I’ll take ten! No wait, I’m broke, I’ll take two. Satisfaction guaranteed, and I even managed to snag a bag of cat food for $6 (anywhere else it’s $10+). I was feeling good, enjoying my unexpected day, and with a quick glance at the clock on my iPhone, I knew I only had to kill another hour before my weekly pain therapist appointment downtown. This is where my day took a nosedive…
Kmart is in a not so fun part of town that I usually stay away from for good reason. That reason being a large population of homeless and meth enthusiasts that have no problem at all harassing me from across the street, and/or following me after I’ve said no to giving them a dollar. Trust me, I speak from experience. So after my elated shopping trip I took to finding the nearest bus stop ASAP. Unfortunately today was the day that my handy TheBus app would fail me. I walked two blocks down and crossed the street only to find I’d indeed gone in he wrong direction. Switching courses, I went back the way I’d come and walked three more blocks in what I hoped and prayed (to the gods of chocolate biscuits and hot cups of tea) would lead to a bus stop with a bench. For now my left foot had swollen up considerably and by the time I did reach the stop I was limping and all memories of a good day were a distant after thought.
I decided to call my mom for advice because I wasn’t quite sure what my next move should be? Should I ditch my Drs appointment and spend what little energy I had left getting home before the pain became crippling? Should I go to my appointment and risk not being able to get to a bus stop and make it home? What was I to do? After considerable debate we decided that I would keep my appointment (as I really needed to consult with my dr on impending issues), and I was to call my mom when I was done, presumably so she could pick me up. (The sacrifices my mom makes to help me on a regular basis are nothing short of astounding.)
So after a bumpy bus ride, followed by a 20 minute limp-and-shuffle, I made it to my appointment. My foot now the size of a football, I gingerly rested it on an adjacent chair and spent the next 40 minutes regaling my therapist on my painful and yet often comical escapades. After said appointment, I dutifully called my mom as promised and within ten minutes she arrived in her shiny silver chariot, her angel wings cleverly concealed under a blue striped sweater and jeans.
What lesson did I learn from today’s events you may wonder? Well, none. See, that’s the point. When you have Rheumatoid Disease or any other chronic pain or autoimmune condition, it’s not about putting yourself in compromising conditions and learning from them. The point is that we never know when a good day is going to turn bad. I could have a phenomenal day starting at 6am- I could be close to pain free and because of that I decide to make the most of it by going to the beach or seeing a movie, maybe taking a nice long walk, or going to visit friends or family. And that’s when my disease hits me out of nowhere with an excruciating pain flare in my hands making it impossible to navigate a fork or a grocery basket. My foot swells suddenly so I can’t keep walking, stranding me somewhere I don’t want to be. Or even giving me terrible hot flashes in the middle of a restaurant or mall where I’m so suddenly hot and dizzy that if I don’t lay down immediately, I may very well pass out. This has happened more occasions than I care to admit.
We don’t see these things when we wake up in the morning. We can’t. We just have to go along with our day and hope we aren’t hit with something terribly debilitating. Yes, sometimes it’s nice to remember the days of old when we could make plans in advance and keep them, or be confident in the fact that a day out at the mall or the movies remains just that, and doesn’t end with a hurried trip home to bed, or worse, an emergency room. Things don’t always go our way. We know it better than most. That’s why we just live each day as best we can. And live with the knowledge that if a good day turns bad at least a cup of tea and nibble of chocolate awaits us, alongside a bucket of hot water to rest our weary feet.
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