Why I haven’t showered lately

January 16, 2014

This is the kind of stuff I wish the social security and insurance folks would see. My hair is stringy and I just feel sort of, kind of, well…. gross. I’m sure you know the feeling. We’ve all had to go days without a shower before. It can be because of the flu or a sprained ankle or stitches that can’t get wet. It happens. And this is one of those times for me, but the situation is less acute.

Earlier this week I made the mistake of taking a shower. I shower most days when I can. I know it’s not good for my already-dry skin or for my terrible body temperature regulation, but I find it refreshing. The other day, though, was a mistake. I’d been home for most the previous week because I was in too much pain to go out. That day, I felt like I might finally be able to manage a trip to the grocery store, but the shower destroyed those meager hopes. Suddenly, I was in so much pain I could barely stand, never mind walk to my car and then walk around a store. And forget about actually driving. I thought I might go later, but the combination of the shower and the pain were so exhausting that I just didn’t have the energy.

Yesterday I figured I should try going to the grocery store again. This time, I skipped the shower. I thought I might shower later, but I was just too tired from shopping. Still, I had groceries* and, even better, I’d gotten out of my apartment and experienced fresh air. Finally!

Today I had to make another choice. I could feel that if I took a shower, that would be it for me, and I had a family member I really needed to visit. I debated, then skipped the shower. Tonight, I thought about showering, but had to choose between that and cooking dinner. I chose to cook dinner.

I am not complaining about the lack of showers. Talk about a first world problem! I’m so fortunate to turn the faucets and have clean water come out any time of the day and night. I once lived in a place that was prone to droughts. No one there ever showered two days in a row, so I didn’t either. That was fine. Really, I don’t mind the lack of showers too much. What I mind is the reason for the lack of showers. My choices shouldn’t be

  • groceries vs. shower
  • family vs. shower
  • cooking vs. shower
  • feel not completely horrible vs. shower

These are lousy choices. Just pitiful. These are the choices that most people don’t know we have to make regularly. They don’t see this part. They see me walk from the car to the grocery store and give me a dirty look for parking in a handicapped parking space. They don’t know what I had to give up just to get to the store, or how tiring and painful it will be for me to get home again. They don’t understand the constant decision-making, prioritizing, choosing. They don’t understand that working at a paying job is completely out of the question, because even getting to the job every day is impossible. These are the things most people don’t see.

So the next time a doctor or an insurance person asks for an example of why I can’t work, I won’t bother to tell them about pain and exhaustion. I’ll just tell them I had to choose between taking a shower and cooking dinner. Maybe that will help to clear things up.

*For those who read the last post, yes, I finally have some bananas!

2 Comments | Decisions, Educating, Expectations, Fatigue, Frustration, Healthcare, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Broken leg vs. chronic pain

January 7, 2014

It was unseasonably warm here in Boston yesterday, so of course I was in excrutiating pain. It’s an odd symptom, but it’s a consistent one. I made a comment about how I was probably the only person in the city who was looking forward to today’s brutally cold temperatures. A neighbor pointed out the risk for slipping on the ice and breaking a leg.

I understand why he was concerned, since he had a bad fall on the ice once before and did break bones. On the other hand, he just wasn’t listening to what I was saying. Yes, today he might fall, and if he does then he might get hurt. But yesterday I was definitely in horrible pain. I won’t debate which kind of pain is worse, since I’ve never broken a bone and have no way of knowing. But I do know that his healed and he’s now pain-free. I can’t say the same.

I’ve encountered this kind of thing so many times, and you probably have, too. People assume that their potential for pain is to be avoided at all costs, even if it means I’ll definitely be in pain. In this case we’re talking about the weather, so we can’t control it, but it happens in other ways, too. They think they’re worse off having to climb 5 flights of stairs with a healthy body than I am if I have to climb one flight with a sick body. I remember climbing 5 flights with a healthy body. I used to do it a lot. I didn’t like it, but 10 minutes later I’d forgotten all about it. I can’t say the same now. Now, 1 flight could hurt for the rest of the day.

Other people’s pain matters. I’m not saying that it should be ignored. But just because I’m in pain every day, doesn’t mean that I don’t want to avoid making it even worse than it already is. It’s not a contest. Really, it isn’t. But shouldn’t the definite be avoided even at the cost of creating a possibility?

4 Comments | Educating, Expectations, Frustration, Insensitive, Limitations, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

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

1 Comment | Educating, Fatigue, Frustration, Insensitive, Limitations, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

How the other side lives: others’ medical appointments

November 27, 2013

I’ve been going to other people’s medical appointments lately. Well, I’ve really only been going to appointments for two. The first is my father. He needs someone more experienced to ask the right questions. The second is a friend who just had a baby. I just hold the baby in the waiting room while my friend has her checkup or whatever.

It’s interesting to see how the other side lives. My father has only recently had any health problems, and my friend has had almost none. Yes, I’ve gained some insight into their lives and into what it must be like to have a straightforward appointment with no medical mysteries, something I haven’t experienced since I was a pre-teen. What I find more interesting, though, is the reminder of why “healthy” people find it so hard to understand what we go through.

It starts before the appointment. There’s no major prep. There’s no gathering of pill bottles, lists of questions, or compiling of medical records. There’s no anxiety. There’s no worry.

Then there’s the day of the appointment. It’s no big deal to them. It’s just another item on another day, like doing laundry or buying groceries (which are also no big deal to them, unlike to me.) The appointment itself is straightforward. It’s treated like meeting with a plumber to get your pipes fixed – they ask questions, get answers, and go on with their day. There’s also more trust in the medical establishment. They don’t worry about tests not being covered by insurance, doctors not providing the right diagnosis, or any of the rest I worry about. And there’s so much trust in general! They don’t edit what they tell doctors, worried about being considered a hypochondriac. They don’t worry about being disbelieved. They state any problems and move on.

As if that wasn’t enough, there’s the followup, or lack thereof. After most of my medical appointments, there’s a parent or friend wanting to know every detail. Well ok, with my father’s current issues, we’ve been having followup calls with my mother. She wants to be there, but since she works and I don’t, and to be honest I have more experience with doctors, I’ve been going to the appointments. But for my friend, when it’s done, it’s done. I’m sure she updates her husband when they both get home at the end of the day, but that’s it. There’s no rush, no concern, no potentially life-changing news to impart.

Part of me is jealous, but mostly I’m amazed. I had forgotten that it could be like that. It’s a good reminder of why my friends don’t understand all of the crap I deal with aside from how I actually feel. They have no clue about the insurance nightmares, the anxiety, the stigma, or the huge amounts of time involved. It’s completely foreign to them. I might as well move to Kenya and expect them to automatically understand my life there.

I’ll try to remember this the next time I get a blank stare as I explain that even though I don’t work, taking care of my health is more than a full time job. Or better yet, maybe I should get them to come to an appointment with me!

Leave a Comment » | Educating, Expectations, Isolation, Rants, Support | Permalink
Posted by chronicrants

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