How chicken ruined my laundry plan

January 22, 2014

The plan was simple: breakfast then rest then laundry then lunch then more laundry then more rest. I’d scheduled today for laundry several days ago. I was ready. I was desperate. I was running out of clean, comfortable underwear.

It started out ok. I ate breakfast, and rested, but then I was really cold so I took a hot shower, so I had to rest some more. I was starting to get the clothes ready, but then I remembered that I meant to get dinner started in the crockpot. I set aside 20140102_214125the laundry prep and headed to the kitchen. This is the easiest way for me to “cook.” I just throw some ingredients in the crockpot and then leave it for 6 hours or so. But as I was getting it ready, I realized what the odd smell in my kitchen had been – the chicken was no good.

Crap. Now what? I had two issues: I couldn’t make dinner and I had smelly, expensive chicken in my kitchen. The first wasn’t too bad. I had other food, so I didn’t mind waiting. But I needed to return that chicken. It was too expensive to throw out, and I didn’t want it smelling up my kitchen. I was too tired now for laundry, so I figured I’d do that after lunch, then return the chicken. But that was no good. What if I was too tired to leave the house? Better to do the thing that meant leaving the house, I decided, and do the indoor chore after. So I returned the chicken.

Once I got to the store it was quick and easy. I bought new chicken breasts that I can put in the crockpot tomorrow. No worries. I needed to stop at another store while I was out, but I was just too tired. I’d been pretty active the last 4 days, and 4 consecutive days of leaving the house is my limit. Often I can’t even manage 4. Today was #5. Oh boy. So I skipped that second errand.

And now it’s almost 4pm. My neighbors will be coming home in the next couple of hours, which means I’ll have more competition for the washing machines and dryers. My brain is saying I should just do the laundry and get it overwith, but my body is just So. Damn. Tired. I’m still hoping to do laundry later today but first, I think I’ll go lay on the couch and watch some tv. It’s not my first choice. In fact, if I’m not going to do laundry then I’d rather read my book, make some phone calls, work on an article I was asked to write for a newsletter, or even play solitaire. But I’m just too tired, so I’ll be resting on the couch. And if I can’t do laundry today, then tomorrow I’ll just have to wear the too-small underwear that rides up my butt. So be it.

I blame the chicken.

Note: If you’re tempted to suggest I use a laundry service, read this.

4 Comments | Decisions, Expectations, Fatigue, Frustration, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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

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

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.

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

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