03 July, 2014

Round and round in my bed life

My life is pretty great. Let's talk about it. Okay, it's not the greatest life ever, but there are certain times of the day when I feel really satisfied. Last night I remember taking out my contacts, throwing them away, and reaching for my glasses; and feeling pleasantly surprised at how easy it was to do this. I used to take three hours to get ready in the morning and now I can take less than one hour--and that's not racing against the clock and working super hard to focus on what I'm doing.  I don't even use timers right now.

Around the beginning of last year, the idea developed that I could try to make my activities of daily living easier. I'd give most of the credit to the family I work for.  First of all, my job is so easy and fun that I can focus on things besides hating my life and being afraid of getting fired.  Second of all, Anna's parents are really organized. Of course I've met organized people before, but I was never in the right frame of mind to notice and appreciate it.  This time around, I was.

If I'm looking for pillowcases or paper towels or stacking cups or shoes, I always know where to find them in Anna's house.  Each pair of shoes even always goes in the same compartment in the thing that holds the shoes.  Her long-sleeved and short-sleeved shirts are in different places, and the long-sleeved shirts are divided into patterned and not.  Her hoodies are organized in such a way that you can identify them without unfolding them.  And a lot of things are labeled.

This makes everything more predictable, which is great. I decided that I wanted my living space to be like this, but even more so. Since I run into problems when I have to make decisions, I decided that I would do exactly the same things in exactly the same place when I was doing activities of daily living like getting dressed, putting on makeup, or putting in my contacts.  Over the first year that I was trying to make things easier, I realized that reducing the number of steps was even more important than making things predictable.  I decided to set things up so that I barely had to move to get ready in the morning and get ready for bed at night.  By the way, this might not make sense if you don't read my mush post first.

Right now my schedule is like this:

I wake up in the morning (usually before my alarm). I reach for my phone to see what time it is, and open my computer, which is on a large table next to my bed. I might check tumblr or something, and if I'm thirsty I drink some of the seltzer that I always have in my room. I have a recycling bin next to the bed for all my cans of seltzer. If I'm hungry, I drink a bottle of Ensure or eat a corn tortilla or some crackers, all of which I can reach from my bed.  Then I start up whatever TV show I'm watching right now.  I put in my contacts.  I throw the contact boxes away in the container I use as a trash can.  Then I reach for my backpack, which is at the end of my bed, and take out the Ziploc bag in the left corner pocket, which has all my makeup in it.  I sit on my bed and watch TV as I put my makeup on.  Then I put the Ziploc bag back in my backpack so I'll have makeup if I need it during the day.

My bed has bars which means I can hang a lot of stuff on it.  I usually have some clothes hanging on the end of the bed--all the clothes that have been worn at least once, but are okay to wear again (shirts and leggings=two days, pants=three days, skirts and hoodies=until I do laundry).  The other clothes are in my cubbies, which are next to my bed.  I have everything folded so I can see what it is.  I can just look at all the clothes and decide which ones to wear, and I can even reach my desired articles of clothing without getting out of bed, even though I might have to move to the edge of the bed to do it.

I don't brush my hair so I am now ready to go.  I pack my phone and my computer if I want it, turn off my power strip, and go to the other side of my room where my shoes are.  I put on my shoes.  Then I go in the bathroom, brush my teeth, and leave.

When I get home at night I usually just want to get in bed.  If I have something to do in the house, like put my frozen vegetables in the refrigerator or take out the trash, I look at my watch and promise myself it will take less than fifteen minutes.  After that I go in the bathroom, brush my teeth, and wash my face.  When I get in my room I put down my backpack, turn on the power strip, turn on my lamp, change into pajamas, do my *~Skincare Regimen~*, take out my contacts, and put on my glasses.

Bear in mind it's often like eight o'clock at this point, and I might not turn out the light and go to sleep until midnight.  But I've pretty much always fallen into bed and mushed out as soon as I've gotten home.  The difference is that for a long time I didn't accept that I would do this, so I would lie down with my clothes on and then spend the next few hours trying to get out of bed to brush my teeth and wash my face.  Obviously my mouth was 90% cavities and my skin condition was out of control to the point that I didn't want to wash it even when I had the chance, because touching my skin hurt so much.  Now things are a lot better!  Having a face that doesn't hurt is probably my favorite thing about life right now.

Aside from changing the way I do stuff at home, the most important ADL decision I've made was about what not to do at home, i.e. cooking and eating.  This was a hard decision to come to because I grew up thinking of cooking as something that is part of being independent.  My parents had enough money to go out to eat a lot, so we did, but they would cook at home a lot too.  I felt proud when I learned to cook some simple meals by myself.  Over the first two years after college, I made my own meals the majority of the time and was slowly learning to make more and more things.  I didn't make anything complicated, but I enjoyed the food I made.

But even though this sounds like a nice progression to independence, I realized that it wasn't benefiting me.  The problem isn't really the time and energy involved in cooking, although that is usually a lot more time and energy from me than it would be from someone else making the same thing.  It does take time but it's sort of fun and I guess it often takes me the same amount of time to travel to my favorite diner....where I'm writing this right now!!! I love you Lucky Penny!!

Photo of me drinking coffee in a diner with very unkempt hair

I bet you would never have guessed I don't brush my hair, right.

Anyway, sorry for the derailment but the main problem is actually dishes.  I don't think anyone finds dishes fun and easy to do, but for me because eating is a more relaxed, mushy activity, it's really hard to go from eating to doing the dishes.  If I eat by myself in my room instead of with roommates, then I get even mushier and end up falling asleep surrounded by an army of dirty dishes.

It is fun to imagine a fantastical universe where some amount of planning or prioritizing could lead me to do all my dishes all the time, but I don't think that is realistic, at least not at this point, and I feel like it's contributed to me being unhappy when I live in a gross, cluttered house full of ants (which happened in the first place I lived after college) or my roommate is always justifiably upset with me for not doing the dishes (which happened in the second place).

It was a major load off my mind when I started going out to eat by myself.  I had almost never done this before, and it can feel like a weird thing to do at first, but it's super great.  Before I started going out to eat I would often get takeout when I felt like cooking was too hard, but this wasn't a good solution because I still had dishes.  When I go out to eat I don't have to focus on anything before eating (getting groceries, cooking, etc.) or cleaning up anything after.  There are clear delineations for when the meal starts and ends.

Even more importantly, it replaces something that was a source of problems with something that makes me really happy.  I love going to diners and cafés, not just because I can eat something that would probably be too hard for me to make myself, but because I like the experience of being there.  It's similar to riding public transit--since I'm dressed and out of the house I'm pretty alert, but there isn't anything I really need to focus on, so I can use my alertness for whatever I want.  I can read, write, and listen to and observe people around me.  This is something that makes my life better at any time of the day, but it's especially nice to start the day like that.

In fact, my initial motivation for going to diners and cafés was happiness, not doing the dishes.  This was because I had a realization about the Stamford Museum and Nature Center.  SM&NC is a place where I spent a lot of time when I was growing up and have a lot of memories of.  My parents brought me to lots of classes and events there, we would volunteer at events, and my dad and I led a hike there every fall for about 19 years.

My priorities in adult life have pretty much always been: 1)survival (getting up in the morning, going to work, eating), 2)lofty goals (writing, reading, having meaningful relationships), and 3)short term pleasure (sleeping, mushing out, or anything else that takes no effort to do).  But last year I came to the pretty obvious realization that SM&NC wasn't just automatically part of my life--my parents had decided that it would be fun to be involved there.  This is why people do things that take effort and don't seem to have an obvious benefit, like going on vacation.  It actually is a good feeling to plan and make time and put in effort just to do something fun.  It's also a different kind of fun from falling into bed at night or running into Walgreens to buy candy on the way to work.  You can enjoy it more if you scheduled the fun.

Obviously, these are just the things that have made me feel better and function better this year, and won't necessarily work or be affordable for other people.  But I wanted to explain and share them in case they could give other disabled people some hope about making daily life easier.  Seriously, I feel way happier and my face doesn't hurt, and that's quite a thrill.


  1. It's amazing to see that you've got a kind of system there. Not only have you kept tab on all your stuff, you've also got all those bins around for trash disposal. That is a helpful bit of geography, in my opinion. Just keep it up and may you go on further into keeping your methods safe and clean. All the best!

    Aaron Walters @ Green Clean Water and Waste

  2. Congratulations on applying your intelligence to YOUR situation and finding solutions that work for YOU.

    You sound both more organized and happier in your writing.

    I, too, do everything possible by routine - because I have little energy. Fortunately I don't have to leave the house often (or I get even less done). If you ate what I eat - mostly protein shakes (made with crushed ice in a Bullet they are really close to a milkshake) and chicken from the pre-cooked section in the grocery store - you would be bored. But I've made it so easy for ME. Same principle - different methods.

    Glad it's working for you - it's YOUR life, after all.