Chronic Rants

There’s this idea that every day is a “day off” when you don’t work a full time job due to disability. And in some ways that’s true, if you define a “day off” as a day that you don’t work 8 hours at a paid job. But anyone with a disability knows that’s totally not how it works.

Days that are not days off:

• Days that I have one or more medical appointments. Between getting ready for the appointment, driving to and from the appointment, the appointment itself, and the research to follow up on the appointment, even the shortest appointment is never all that short. I often have to rest for anywhere from 2 hours to the rest of the day after an appointment. It’s not unusual to wake up and do nothing but get ready for the appointment until it’s time to leave the house, then get home and be too tired to do more than eat a meal (if that) and watch tv. It can kill a day.
• Days that I have nothing scheduled and feel obliged to get shit done around the house. I used to think of this as “day off” when I worked a full time job. The difference is, back then I might spend a few hours getting shit done, then go out and do something fun with a friend at night. Now, I can do one or the other, not both. So spending the day washing dishes, doing laundry, cooking, paying bills, and handling paperwork is definitely not a day off. Bonus: I usually forget what a toll these “easy” tasks take on my body, and end up feeling like crap by the end of the day.
• Days that I run errands. Again, this used to be a great “day off” activity because I could get stuff done, then have fun later. Now, I use up my energy with groceries and other errands, and get home feeling too tired to do anything else. Worse, if the errands involve big stores with a lot of walking and florescent lights, I often feel especially sick at the end of the day. Worst of all is clothes shopping, where I usually don’t even find what I need, but feel sick afterwards.
• Days that I don’t do anything “productive” or fun because I feel like crap. That’s called a sick day, not a day off. And it sucks. Big time.
• Days that I try to get things done but have too much pain, brain fog, or energy drain to get anything done. I spend the entire day trying to do stuff, then finally give up because nothing is getting done. By the time I give up, I feel even sicker than I had before, plus I feel guilty for having “wasted” a day.
• Days I deal with medical or benefits paperwork. It’s true that I don’t work a paid job, but if I got paid for the many many many hours I spent dealing with affordable housing paperwork, SNAP paperwork, fuel assistance paperwork, health insurance paperwork, emailing with doctors, researching treatments, researching diagnoses, or any of the myriad other stuff I have to do, I would probably earn enough that I wouldn’t need those benefits. Some irony there, eh?

Do you know what is a day off though? Today. Today was a fantastic day off! Here in the Boston area, we knew a nor’easter was coming. It’s warm enough that we knew it would be rain, not snow, but it was still going to be a nasty storm. I didn’t have any plans scheduled aside from dog sitting. I figured it was the perfect day to stay home and be cozy. I ran my errands yesterday, so I wouldn’t have to do it today.

I set myself 3 goals for today: (1) Finish the novel I’ve been reading so I can finally find out who the killer is. (2) Bake the apple crisp I’ve been wanting to make – mostly so I can finally eat the apple crisp. (3) Cuddle with the dog.

It was such a beautiful day. I did end up doing a couple of things on my to do list, but only because I had time and felt like it. There was no rush. No pressure. No guilt. You know what else I did? I cuddled on the couch with that dog above and finally finished my novel (damn, I should have guessed she was the killer!) I made the apple crisp that I’ve been wanting to make for a month (doesn’t it look yummy?) and managed to not eat too much of it. I walked the dog outside, but otherwise stayed in. I wore cozy clothes all day. I watch a little tv. I relaxed.

And you know what else? I didn’t stress out over anything! No stress, no worry, no guilt, not concern. I didn’t do the million and one things I need to be doing this week, and that’s ok! Too often, I spend every day pushing myself to “be productive” until I burn out, feel lousy, and have to spend a day resting. It’s so much more pleasurable to rest before I get to the point of feeling like crap!

I have been trying to do this more often. Mostly I fail, but every now and then, like today, I manage it, and it’s amazing.

Tomorrow I have plans to see a friend in the afternoon and to do some phone banking from home at night for the upcoming election. I’m sure that in the morning I’ll try to do some of the myriad items on my list. But thanks to the relaxing day I just had, I will feel rested and relaxed and ready to take it on. Or I’ll remember how good today felt and I’ll choose to have some more quiet time instead. Either way, it’s a win!

What are some days that aren’t really days off that I forgot to list above? Please let me know in the comments! And if you haven’t taken a day off lately, be sure to do that soon. Because we all need that sometimes.