Dear laundry machine customer service guy

January 2, 2014

Context: I live in an apartment building that contracts out it’s washers and dryers. The company that handles them has been doing a lousy job lately. I had to deal with a broken dryer twice recently and today I had to deal with a broken washer.

Dear laundry machine customer service guy,

You might think I’m overreacting to your company’s broken machine. You may think my response is out of proportion, even though this is the third time in a row I’ve had to deal with a machine that didn’t work right. Here’s what you don’t 20140102_214125understand: I’m sick. No, I don’t just have a cold. I mean, I have a chronic illness, so I’m sick all the time, every day. Doing laundry is a big fucking deal for me. I set aside an entire day to do laundry because it wears me out. On the days I do laundry I know I might not be able to run errands, cook dinner, or clean up around the apartment. I certainly can’t socialize with anyone. So doing the laundry is a big fucking deal.

Today I set aside the time. I made plans. I planned to go down to the basement 3 times: once to put my clothes in the washers, once to put them in the dryers, and once to bring them upstairs. Your broken machine meant I had to put my clothes into a different machine, which meant a 4th trip to the basement.

It isn’t just about the extra $2.50 to run a second washer after the first one didn’t work out. Sure, $2.50 means more to me now than it did when I had a job, but it’s still not about that.

It’s also not about the extra 45 minutes to travel to the basement, find my unclean clothes, and run them through another machine. Sure, I’m not happy about that. I didn’t plan on it. I might have had to be someplace or do something. There might not have been another machine free. But no, it wasn’t about that.

It as about the extra pain and the extra loss of energy. It takes so much effort for me to do laundry that I try to only do it on my best (aka least sick) days. But that doesn’t mean I’m completely healthy on those days. By that last trip to the basement, my knees were starting to buckle. I felt the pain. And I was more tired than ever. Some days I can barely bring my laundry back to my apartment and I don’t have the energy to fold it. Why should I have to expend more energy because of your broken machine?

If this was the first time, I’d let it go. I’m sure that to you it’s no big deal. But for some of us, doing a load of laundry is a big fucking deal. It’s tiring and painful and incredibly difficult.

And I’m one of the lucky ones.

Sincerely,

A pissed off customer


I don’t have plans but I still won’t go out with you

December 29, 2013

I think that when most people get an invitation, they accept unless they have other plans or expect to have other plans. Sometimes they might need to schedule a day to just rest and take care of personal stuff. I used to schedule a “me” day Sunny Dayabout once every month or two so that I could relax, read, watch tv, answer emails, pay bills, etc. But things change when you have chronic fatigue.

My mom wanted to go shopping today. Since money is tight for me, she’s buying me a new winter coat for Chanukkah (thanks Mom!) Scheduling-wise, this seemed like a good day, but I’m tired and in pain and there’s just no way. So I told her that and she understood.

Sometimes the person who wants to get together is a friend I don’t know as well. They don’t ask it as “Do you want to go out tomorrow?” but instead “Are you free tomorrow?” or even “Do you have any plans?” The connotations are the same and they’re all socially appropriate, but for me they’re very different questions. No, I don’t have plans, but that doesn’t mean I’ll get together with you. I might want to, but I just can’t. It’s easy to turn down the invitation once, but it’s harder to do that over and over with someone who doesn’t understand the situation. Sure, I could lie and make up plans, but I don’t do that except in extreme circumstances. My health issues are hard enough; I’m not about to juggle lies on top of everything else. Still, it’s hard to get people to understand the validity of, “I’d love to get together but I’m going out two days before that so I won’t be able to go out again so soon.” To most people, that just doesn’t make any sense at all.

Of course, then there’s the awkward, “Yes I’m free, and yes I want to get together, but only if you come to my place.” That might sound nice to some – I’m inviting people over, after all. But the truth is, I ask them to bring their own meals because I don’t have the energy to cook for others; I barely have the energy to cook for myself! I don’t “entertain” but instead stay on the couch while we talk or play a game. Since many of my friends have little kids, coming to my place isn’t possible if they’re busy caring for the little ones. Plus, so many of us get around on public transportation and getting to my place can take an hour or more each way for some friends. A good compromise might be to meet up in the middle, but if I’m asking them to come to my place it’s because I can’t do that, so then I’m asking them to spend a whole lot of time traveling to see me. This is ok from time to time, but not every single time.

For the close friends and family, this is all ok. Sure, it’s cumbersome and annoying for all of us, but they understand. They know that when the sun is shining and they’re at the park with their kids, I’d so much rather be with them than sitting at home browsing the web. They know that I’d like to invite them to dinner and actually provide it. They know I will gladly go to their place on the few days that I can. But for everyone else, it’s a bit harder. I’ve noticed that I’m getting fewer invitations these days. When someone gets turned down over and over, I guess they feel there’s no point in continuing to invite me. I’d probably feel the same way if I was in their place. Still, I’m choosing to focus on the people who’ve stuck around. Those are the true friends who I really want to spend my time with. And if I got my health back tomorrow (if only!) then those are the people who I would continue to spend time with.

So instead of shopping for a new winter coat to replace my old, torn one, I’ll be writing blog posts, reading blogs, watching tv, and reading my library book today. It’s not great. Actually, it sucks. But I don’t feel that I have a choice. I’m just hoping I’ll be able to go out tomorrow, instead. I’ll be keeping my fingers figuratively crossed both for me and for you and we’ll be able to get out at least a little bit this week.


Chronic illness logic: clearing snow at 11pm

December 18, 2013

Everyone uses different criteria for when they’re going to deal with snow. Usually it involves some form of “when I have to.” When you have a chronic illness, though, you have to pace yourself.

I need to drive my car tomorrow. It snowed last night. If I clear my car off* tomorrow on my way out, like I would have back when I was healthier, then I’ll be too tired to go where I need to Blizzard 2013go. If I cleared my car this afternoon, I would have been too tired and in too much pain to do the other things I wanted and needed to do today, including seeing a friend tonight. So instead, I did it on my way home from seeing my friend, at 11pm. Sure, it was late. I was tired. I was sore. But that’s an even better reason to clear the car! This way, I’ll be going to sleep anyway. With any luck, I’ll feel better after getting some sleep. If I was going to be tired and in pain and wanted to leave the house anyway, this is actually a good time for it!

And that’s how I found myself clearing snow off of my car at 11pm tonight. It’s a logic that I think only people with chronic pain and chronic fatigue and truly understand. It sure makes sense to me!

*Thankfully a neighbor did the actual shoveling for me earlier today, so there was a clear path out of my parking space. But I still needed to get 6″ of snow off of the top of my car, the windshields, the hood, the trunk, and the windows.


Dreams of winning the hypothetical medical lottery

December 13, 2013

I keep reading and hearing about the big $400 million lottery jackpot. I thought for a minute about what I’d do if I won (unlikely, since I didn’t buy a ticket) and I was surprised by what came to mind.

I used to dream about winning. I figured I’d quit my job, buy a house, travel with friends, get a couple of dogs, and support20120809_220808 charities. Those were the first things that came to mind. Those are all still on my mind, but now something else comes to me first: doing all the health stuff I feel I can’t afford to do right now.

Money doesn’t solve everything, but it sure could help! I wrote about this 2 years ago but life was so different then. And back then, I didn’t know what was causing my health problems. If I had that money now, I’d immediate see the doctors who don’t take insurance, run all the lab tests that the insurance companies don’t want to cover but that I know I need, and take the extra supplements I’ve been avoiding. That’s already thousands of dollars every year. Then I’d go back to physical therapy and start getting therapeutic massage every week. I would pay to see a doctor for a medical marijuana prescription and buy a high-end vaporizer to help with the chronic pain. I would get a dog, which would do wonders for my emotional health (and I could then afford a dog walker for the days I needed someone, which would be most days.) I could get a home with central air conditioning so I wouldn’t feel as horrible all summer long. Of course, I wouldn’t have the stress of worrying about my future finances, and that would really help with my cortisol levels. I would update both my eyeglasses and my orthodics more often. And of course there’d be things like buying only organic produce.

This flashed before my eyes in an instant, and then it was gone. I didn’t win the lottery. I need to save the money I have in case my benefits are pulled away, which could easily happen any time. And I don’t have enough money to make all of that happen anyway.

It’s sad but true: good health costs money. I’m lucky to be doing as well as I am, to be honest. I’m thankful for a safe home, good health insurance, and a supportive family. But $400 million might not be so bad to add to that.