My pajama radius

October 8, 2013

I was watching How I Met Your Mother the other day and they did a joke about Marshall’s “underpants radius.” Ted explained that, “Everyone’s got an underpants radius. For most of us, it’s the distance from the bedroom to the bathroom, but as your self-esteem gets smaller, your underpants radius gets bigger.” Apparently, as Marshall’s unemployment dragged out, his underpants radius increased to laying on the couch, to getting the newspaper, and eventually to going to a restaurant in his underpants.

That got me thinking about my pajama radius.

I live in an apartment building. I also live alone. It used to be that I wore nothing more than underpants between my bedroom and my bathroom, but I covered up to walk to another part of the apartment. Occasionally, as I was getting ready for bed I’d realize I’d forgotten my book or something in the living room. I sleep naked. I used to cover up to get the book, but after a while I just covered my breasts with my arms and ran in, keeping the lights off. Eventually I didn’t bother to cover up or run, but I kept the lights off. Then I’d need to get something in the kitchen after my morning shower but before I’d gotten dressed, and I’d just walk in naked, even during the day. Even with the shades up. But hey, this was all in my apartment and it was my body so it was ok, right? It was also when I was feeling fairly healthy.

A funny thing happened when I got sicker, though. I began to spend a lot of time in my pajamas. They started to feel like “real” clothes. It used to be that when someone came to my door and I was in pjs, I’d throw on a bathrobe or a sweatshirt before I’d answer their knock. Now I don’t bother. Then I started wearing pajama bottoms to take out the trash in the evening. As I felt even worse, I’d just wear full pajamas to take out the trash. At some point, wearing pajamas to check the mail in the lobby seemed ok. I began to have visitors while I was in my pjs. And then last week, I found myself wearing my pajamas as I walked my friend to her car across the street so that I could get back my parking pass.

When did this happen? I know it’s been in the last few years that my pajama radius has spread. It seems to come from two health-related things: quality and quantity. Sure, as my health gets worse I wear my pjs more. But also, the longer this goes on, the less I care. There are more important things in life to worry about than whether a neighbor sees me in my pjs. I don’t care if a neighbor sees my hair messed up or my boobs swinging freely under a pajama top. If I let them see me when my insides feel like crap, why should I care if my outsides look like crap, too? Society says I should care, but society averages towards feeling healthy. I do not.

I suppose the only question is, does this matter? I’m guessing it does. But I just don’t care.


My timeline for going out

September 25, 2013

2 weeks before event: put potluck in calendar

1 week before event: see potluck in calendar, see many other things in calendar, wonder if I’ll make itDinner

Sunday: thinking potluck is a good idea

Monday: figure out what to cook for potluck

Tuesday: feeling optimistic; buy ingredients for dish for potluck

Wednesday morning: stay in all day to rest up for tonight’s potluck – yay!

Wednesday afternoon: figure out timing for cooking and travel

Wednesday evening: cook dish for potluck, look up directions to place of potluck, start getting dressed for potluck

Wednesday evening, later: realize I don’t really want to go to the potluck; ok, I want to go, but not as much as I want to stay in my pajamas and watch tv all evening; yup, that’s what I want

Wednesday night: watch tv, eat the dish I made for the potluck, remember that I’ll go out another time, hope that some day nights aren’t so tiring for me, feel glad that I’m just feeling a bit tired and not feeling completely horrible like some other nights

Thursday will be another day with new opportunities.


Am I really ready to date?

September 14, 2013

I have a date coming up, and suddenly I’m not so sure if I’m ready to date.

I’ve written before about my insecurity around dating because of health stuff and about getting back into the dating world after a long absence. I’m trying to get over those insecurities, but that’s not what’s holding me back. Right now, the issue is the physical logistics of dating.

I’ve had a crush on this woman for a long time, and the other day I finally asked her out. And she said yes! I’m so excited that she said yes! She knows about my health stuff and has always been very supportive. She doesn’t mind when I cancel plans at the last minute or when I need to make accommodations for myself. She gets it, and she always tries to help. So it’s not like a usual date, where I have to worry about disclosing and how the person will handle it – she already knows, and she still wants to go out with me, so yay!

So you’re probably wondering what my problem is. Well, we started talking about when to go out, and I got a bit stuck. I’m sure at least some of you can relate. I need to have the energy to not only go out, but to put on a good face. She knows about my illnesses, but I still want it to be a fun evening, of course. So I looked at my calendar: big event Sunday, so I’ll need to rest Monday; Tuesday is ok and maybe Wednesday, but I have plans Thursday so that means Thursday night is out and probably Friday too; I have something big Saturday so that means I can’t go out Sunday; that next Monday I have an exercise class for people with pain in the late afternoon so I’ll probably be to tired to go out in the evening; I have a medical appointment late Tuesday afternoon so Tuesday evening is also probably out…. and so on. Not good. Luckily she’s free this Wednesday. That means my plans on Thursday will completely exhaust me, but I think it’s worth it. But if we both want a second date? I can’t imagine how we’ll pull that off.

Of course, then there’s the date itself. She suggested dinner and a movie, but she was very understanding when I explained that sitting in those cramped theater seats for two hours does bad things to my knees. And she even asked if dinner would be too difficult. I think I can find a good place for dinner, and afterwards we may see a comedy show. I’ve been to that place before, and the seats will allow me to stretch my legs, plus it’s easier to get up in the middle if I have to. But there’s still the issue of staying awake. I get sleepy earlier now. Staying out “late” is hard. The good thing is that even though I don’t work, she does, so I imagine that she won’t want to be out late on a Wednesday.

All of these logistics have me worried. Maybe I’m not ready to date after all? I’m hoping that being out with someone so understanding will help, but I also don’t want her to always have to be so understanding. I want us to have fun. I want to enjoy myself. I’ve liked her for a long time and I don’t want to screw this up. I’m going to try to focus on the main thing at the moment: she said yes! Hopefully the rest will work out somehow.


What do I do all day without a “job”?

September 7, 2013

I have been asked over and over again what I do with my days since I don’t “work.” I understand where they’re coming from. I guess I used to wonder the same kinds of things. Now I realize how absurd that is.

First of all, I do work. I have a job: my health. I don’t get paid for it, but it’s my job. And it’s harder than any paid work I’ve ever done.

Several years ago I quit a job where I was unhappy. Suddenly I had so much free time! I learned new skills, Atlanticimproved my diet, got into a good exercise routine, went out many nights with friends, spent more time with family, traveled… it was a great time and I hated to go back to work. The thing is, I felt good then.

It’s not like that now. Now, I can’t do half of what I did then in a day. Now, I have to rest a whole lot more. I spend more time in bed. I read more. I want to go out but can’t. I spend huge amounts of time planning out my meals, pills, and other health-related stuff. And that’s before we talk about the paperwork.

Right now I’m hiding from the work. I’m writing here because the rest is too overwhelming. I should really be doing one of these (though some can only be done on weekdays):

  • Reading one of the five library books I have out on hypothyroidism.
  • Filling out one of the two forms that the long term disability insurance company sent me.
  • Contacting my lawyer about the next steps in the long term disability insurance application.
  • Trying again to fix a dental insurance status issue.
  • Figuring out if a medical appointment I had last month will be covered by my current or my old health insurance.
  • Filling a prescription.
  • Making an appointment with a new primary care physician (pcp).
  • Changing my health insurance over to a new pcp.
  • Making an appointment with a resident in the new pcp’s office so that I can get referrals for specialists with whom I already have appointments, since I’ll need the referrals before I’m able to see the pcp.
  • Entering recent lab results into my tracking spreadsheet.
  • Creating a new tracking spreadsheet for daily symptoms.

Of course, in addition to paperwork, I also spend a lot of time and energy around food. I have to figure out what to eat that fits in my diet, 20120917_181648what I’m able to prepare given the weather (I can’t use the oven all summer and I can’t use the stove on the really hot days,) and how to time my meals. Today I’m supposed to have lunch with my parents, but they want to eat around 1:30. That would mean I wouldn’t take my lunch pills until 2, and then I’d need to wait an hour before I could take my 2pm pills, so they’d have to wait until 3pm. That’s no good. So I have to eat earlier on my own. And of course, that doesn’t even include the time spent taking pills. Then there’s the 20-30 minutes I spend each week preparing my pills by filling my weekly pill boxes. Buying the pills also takes time, but that feels like a whole different level.

There’s always more reading and research to be done. I follow patient groups online, a few useful blogs, twitter, and I also read books from the library.

Up to now I’ve been talking about the health-related work. There’s still the everyday work. Cooking, dishes, and laundry exist in my world just like they exist in a “healthy” person’s world, but they take a lot more energy for me. Doing laundry and going grocery shopping in the same day means I can’t do anything else that takes much energy, and some days I can’t even do that much. Going out with friends means I have to rest the next day. For me, “rest” usually means not leaving my apartment. I stay home and read a lot. I watch some tv. I check Facebook. But I don’t go out or do anything strenuous at home.

And by the way, don’t forget that I spend 10-11 hours in bed each night. I figure this isn’t too bad, since I know people with similar conditions often spend many more hours in bed. Still, when you compare this to others my age who only spend 7-8 hours in bed each night, you can see that I lose 2-4 hours of “productive” time each day. I also need to rest after each meal. I’ve learned that if I eat and then immediately try to do something heroic, like put the dishes in the sink, I feel really horrible. Instead, I sit for at least half an hour after each meal. I use that time to watch tv and knit. It’s not exciting, but it works.

Then there are the medical appointments. Some weeks I don’t have any, others I have more than one. They are exhausting. They are physically tiring and emotionally wearing and I have no choice but to go to them. I also leave the house for errands, because even ill people need to buy groceries and toilet paper. On a really good day, I take a 10-20 minute walk. I wish I could do that every day.

Like others, I have hobbies. I would like to spend more time on them. But they require energy, even just small amounts. Most days I have to choose between my hobbies and doing my physical therapy exercises. Given that choice, I have to do the physical therapy. There’s a project I haven’t been able to work on in several months because I just don’t have the time and energy to do it.

Finally, I do want to have a social life. I can’t do it often, but I socialize when I can. I spend time with my friends. I spend time with my family. I occasionally go to events. When there’s the chance, I date. But I can only do one big thing per weekend (I may not be working, but they are, so these things are always on weekends.) That means my calendar is already booked into October. If I go to a wedding on a Sunday, I know I can’t do anything the day before. If I go on a picnic on a Saturday, I know I’ll be resting on Sunday. This is incredibly limiting, but I have no choice. I’m just thankful if I can go to those events; very often I can’t.

No wonder I haven’t had the time to buy new glasses. I’m too busy not “working” at a “job.”

If you can relate to this, please pass it around to your friends and on social media. I’d love to help more people understand that not having a paying “job” doesn’t mean we’re not working.