“Hold on, let me check my calendar.”
I pull up my calendar and look for a day where I will be in the city for appointments, but not a day that’s too full. I sigh, and resign myself to having to schedule another day in the city. It’s not just the hour drive, the gas, the time to get there. I mean that’s part of it, but the bigger part is that it’s just one more appointment on the calendar and there’s still six more I have to schedule.
I find being disabled exhausting. It’s not sitting at home playing PlayStation and eating Cheetos while collecting government benefits. It’s a life of bad days and worse days, fighting with insurance companies, and endless medical appointments that usually end in with some version of “I wish there was more I could do for you” or even worse, “all the labs and imaging are normal. I don’t know what to tell you or do for you.”
Being disabled means being on a first name basis with the pharmacy and the doctor’s office’s staff. It’s too many appointments, too few answers, and too much disappointment. Once you have one chronic illness, they all start piling on top of each other. One isn’t enough, the others want to come for the party too, except this isn’t a party I want to attend.
I’ve been disabled for seven years, and relatively “stable” at my barely functioning baseline for a few years now. But now the bottom has fallen out from under my baseline. I’m finding myself at more medical appointments than I’ve had in four or five years. I’m finding a lower baseline, decreased mobility, and am suddenly allergic to the sun, apparently. I’m finding new specialists, new diagnoses, more appointments. And I’m finding that I am tired.
I am so tired of the long drives, the long days, the appointments with more questions and not enough answers. I thought I had been through all of this already. I thought I had my list of things that were “wrong” with me, and my too-many-meds-gallon-storage-bag-of-rest-of-your-life-medication-with-too-many-side-effects bag that I never leave home with out. Apparently, I was wrong.
Now that I’m dealing with new health issues and finding myself struggling more than I have in years, I’m struggling with the all-too-commonplace issue that people with chronic illness face: going to the doctor only to be told there is nothing they can do, that this is something that I will have to learn to live with, another permanent disease without a solution, another letdown. I’m having to convince myself that it’s worth pursuing new diagnoses because what if there’s a treatment? What if I could feel at least a little better? I should at least put in the effort, right? But I’m just so, so tired. It’s hard to keep chasing down these diagnoses, things that take years to diagnose correctly, and keep coming up without any answers. I want to give up. I want to give in. I want to stop searching, to stop looking for answers because the process is just so damn frustrating and exhausting.
But then, there’s that big if. What if I could be just a little bit better? What if I could stay awake for more than 10 hours a day? What if I could figure out what I’m allergic to? What if I could find a way to be in the sun again?
There’s something so wonderful about sitting outside on a spring day with a light breeze, letting the sun warm you and enjoying the fresh air. Something healing, something restorative. But right now if I sit in the sun for even a few minutes, I find myself having a severe reaction to the sun and becoming incredibly heat intolerant. I start to turn bright red, to break out into a nasty rash. I feel the burn starting, the heat rushing to the area, the familiar pulsating tinnitus starting to creep in. If I am in the sun for more than 10 minutes or I’m even walking for a few minutes in the sun, I start to feel like I’m going to pass out and get lightheaded. I can’t breathe, I can’t talk, I can’t think about anything other than overheating.
The sun is everywhere. It’s pretty much impossible to stay out of the sun. Would I like to be able to be in the sun? Would I like to go back to outdoor activities and beautiful spring and summer days with my family? The answer is a resounding yes, a yes so resounding that even though I don’t want to, I’m going to keep going to these medical appointments until someone can give me an answer, point me in a direction, figure out why I’m having this reaction and hopefully get me back to enjoying the wonderful warmth of the sun on my skin and the gorgeous days that come with this time of year.
Having a chronic illness and pursing new health issues is a balancing act, in my experience. Is it something I can live with? Is it something they can fix? Is it something I want to spend hours and weeks and months to figure out what’s going on and get an accurate diagnosis? Is it something that is just going to stay the same no matter how many appointments I go to or how many specialists I see?
These are all things I have to consider beforehand, and sometimes, honestly, my answer is no, it’s not worth it. But for this — for being with my family, for being outside, for life outside of my room and couch — it’s worth it. And you know, in all honesty, there’s probably nothing they can do. There’s probably nothing that will change this, nothing that will make it better. I’m probably always going to have to limit my time in the sun, which breaks my heart. I see umbrellas and coverups in my future with fewer beach and pool days, sad as that may be.
But then there’s that if.
And if they can do something about it, if they can get me my life in the outdoors back, my time with our 9-year-old and my husband and playing in the pool, then all of the hours driving and all of the money and time spent will be worth it.
But that’s a big if.