Disabled Life

Being disabled is surprisingly exhausting.

First there are all the appointments. Right now I have 3-4 appointments every week, 2 of which are 2-hour pulmonary rehab sessions. Lately I’ve also been having additional appointments with specialists about twice a month, so I might be running to 5 or 6 appointments in one week. You’d think being disabled would mean my schedule is wide open, but all too often it’s jam packed!

Then there are all the phone calls and applications. To insurance companies, to pharmacies, to patient assistance programs. I spent about 3 hours this week completing and gathering documentation for just 2 patient assistance applications. Fortunately I’m hyper-organized and was able to find all the necessary documentation relatively easily, otherwise it would’ve taken even longer!

Then, of course, I still have to manage all the regular-person activities: groceries, laundry, etc.

Meanwhile, I’m not exactly brimming with energy. Each of these tasks can take a lot out of me, depending on the day. So I do my best to scatter them throughout the week, and I try not to schedule more than 1 big task per day. Also, some activities that most people don’t even think about are actually energy-draining tasks for me that require planning and calculation. For example, most people probably don’t think that much about showering. Either you shower or you don’t! But for me, showering can be an exhausting, energy-sapping task. So I have to calculate: How am I breathing today? Am I up for a shower? If I shower now, will I still have energy for pulmonary rehab later? How much time will I need to recover after my shower? I have to figure out all the variables, decide how much energy I have to spend and how I want to use it. I do these kind of calculations constantly, every single day. And that alone is exhausting.

It’s also very stressful. It feels like there’s always another appointment I need to go to, another call to make, another application to fill out. And then all my limited energy is sucked up by these necessary tasks, and I have nothing left to actually enjoy life with. I realized recently that my chore to fun ratio was severely imbalanced, and it was making me stressed and depressed. I need to do more than just stay alive – the problem is, sometimes just staying alive is a full-time job!

Fortunately, my health has been holding steady the last few weeks. My pulmonary function numbers are the best they’ve been since August 2017, and I seem to be holding it together even with slooowly tapering down the Prednisone. I’m breathing and walking better than I have all winter, and that makes everything so much easier. And I’m SO grateful for it! Hopefully I’ll be able to take advantage of this current round of decent health, for however long it lasts, and fill my tank with good experiences to get me through the next rough patch!

(For a great explanation of what it’s like to live with a chronic illness and constantly make those energy calculations, check out Christine Miserandino’s Spoon Theory: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)