Sort of like the proverbial stay-at-home mom, people wonder what a disabled person does all day. You know, because we have nothing but “free” time on our hands. It’s luxurious to sit around in our pajamas, lounge about, and watch shit television (have you seen "My Big Fat American Gypsy Wedding?!"). Hell, before this was my life, I would’ve thought this was a fucking treat too, for about a week.
Let’s note that I’m writing this at 4:30 in the morning. Why? Because I can’t sleep. I’ve been up since midnight, and I felt guilty that every time I woke up, I felt like the thought in my head, that very second, was so important that I had to share it with my husband immediately. He disagreed about their vital importance.
“Honey! We should buy white holiday lights for the porch this year!” (1:45 am)
“Honey! My face is so itchy. Also, my legs. And, my chest. And, my arms. That’s it. I think it’s the new meds. I’m not taking anymore!” (2 am)
“Honey, wake up! I love you. I just wanted to remind you. You’re awesome.” (2:30 am)
“Honey! Look how cute the cat looks!” (3 am)
This is my “snooze” wall. I consider the couch being “social,” so I try to be social, to be with my husband, even if I’m asleep. So, I curl up with him, and conk out. But, I’m there and that’s what counts. Sometimes, I don’t even remember ending up in the non-social bed. He must carry me. Whatta man!
Meds time! More conking out.
10 pm-1 am.
Generally good sleep. So far, if you are counting, that’s about 4 hours. That’s about it for the night. And, if you’re paying attention, it’s not all at once. It’s 2 and 2. That’s not great.
Wakey, wakey! Time for episode 1 of The Painsomnia Show! Painsomnia is like insomnia, except you wake because of pain. Anyway, I’m off to the potty for a half an hour because my meds make it hard to pee. Sometimes, I fall asleep on the toilet. Yep, you heard (read?) that embarrassing confession correctly.
Wakey, wakey! episode 2 of The Painsomnia Show! Sometimes it’s my stupid head (I can call myself stupid head, but you can’t –not to my face, anyway). But, thanks to nerve damage, or RA (or whatever the heck it is) I have a lot of joint pain, so I can’t lay in one position long, without waking. Even better (worse?), my whimpering wakes up my husband. Sometimes, it’s not even pain that wakes me, it’s my own crying. Isn’t that the most pathetic thing you’ve ever heard?
Wakey, wakey! episode 3. Whee! This is fun.
Wakey, wakey! Getting the gist? Every 30-60 min, all night long (allll niiiight- if you didn’t hear Lionel Richie right there, you are wrong). Finally, I’m exhausted enough that I could keep sleeping. But, it’s too fucking bad because, if it’s a week day….
Time to get up to get the boy ready for school! Also, it's morning meds time. Finally, some pain relief! Hooray!
(If it’s a weekend, there is no difference in schedule because I have a cat. And, as everyone knows, cats are perfect and wonderful; but also, they are assholes. My cat, despite being fed and having clean litter, prefers to sleep on the couch after 7 am. He also prefers that everyone else be awake for this. So, he meows, endlessly, until you get up. If you don’t get up, he smacks you in the face. See? Asshole.)
My child’s ride comes to get him. I feel so lucky to have this privilege. Our neighbors, who he loves, do it for us.
I try to feed myself. But, usually I’m too exhausted from getting a grumpy, Autistic/ADHD kid ready and fed, that I just lay down for an hour. So, I don’t eat breakfast. It doesn’t matter how “easy” a bowl of cereal is, that’s how exhausted a chronic pain and chronic illness patient is, most of the time.
If I’ve managed to stay awake this long, this is my crash point. Nap time.
Creative outlet, or work time. I write, paint, draw or do volunteer work. You’d also be surprised how many appointments there are to juggle, for me, and for my son. I generally have to reschedule, on average, one a week because I’m too sick to make it. This is all part of my “work” time. If it’s a good day, I use this time to shower, get dressed, and on especially good days, take a walk.
Boy gets home and I get yelled at for an excessive amount of time, regarding homework. And, it’s during these special moments, I’m reminded of why I became a parent, and how much I love and treasure him. If I'm brave, strong and true, I ask him how his day went.
We play together. Or, on a bad day, I watch him play near me and feel guilty for telling him to stop making noise. Yesterday, I asked him to stop breathing “like that,” because it was making my head hurt worse.
Husband gets home from work and cooks dinner. I’m generally too sick, so we have to wait for him to do it. Again, whatta man!
Time to get the boy ready for bed. We begin with our nightly argument about why we do, indeed, need to brush our teeth every day, and not just on days that they look dirty (gross). Then, we follow that up with a dispute about how long fifteen minutes really is, and how many times we should say goodnight. All such special memories to treasure.
The night starts all over again!
Anyone want in on this glorious pajama lifestyle? It does come with that bonus. PJs, almost all the time. You comb your hair and put on makeup so rarely, that when you do, people treat you like you look like damn Miss America. So, there’s that. Takers?