Why I can’t get comfy for sleep: too many body parts

January 19, 2014

When I got into bed last night, I went through my nightly ritual of trying to get comfortable. And I wondered how many other people go through the same thing night after night.

Some nights I have a lot of extra pain. I’m not talking about those nights. No, I’m talking about the nights that I have my 20130828_171154typical levels of aches and pains. These are the aches and pains that I can mostly ignore while I’m sitting up and moving around, but it gets harder when I lay down and gravity seems to work in different ways.

The lower half of my body isn’t too bad. It’s achy, but I can rearrange myself easily enough. It’s the top half of my body that just feels too crowded. I have to find places for my arms and for my hands, and I have to arrange them around, over, or under my head. My too-big boobs always get in the way. No two nights are the same. One night I can have my hand under my head, the next night that hurts. Some nights I can bend my fingers, some nights I can’t. Some nights I’m feeling overheated and I keep my arms out of the covers, other nights I’m cold and I curl up tight under all of the blankets. Some nights the weight of the blankets feels great, and some nights it causes extra pain. Some nights I can sleep on my stomach, others I need to sleep on my side. Some nights I sleep naked, others I sleep with pjs. Some nights I can shift my boobs around, others they just won’t get out of the way.

Maybe healthy people have this problem too. I wouldn’t know. What I do know is that every night I play a little game of body origami as I try to stretch, bend, and rearrange my body parts in a way that lets me sleep somewhat comfortably without triggering extra pain, and without my body parts getting in the way of one another. So far, most nights, it works out in the end. I sure hope that continues!

1 Comment | Expectations, Frustration, Limitations, Pain, 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

All I want is a banana!

January 13, 2014

The title of this article isn’t a euphemism. I mean, I’d like sex too, but right now, I’d just really like to get my hands on a banana.

Within 2 blocks of my apartment building there are at least 4 places where I can buy bananas. Groceries, pharmacies, and convenience stores all them, so they’re easy to find. Unfortunately, these days they aren’t easy to get to. Thanks to pain in my toes, walking is really difficult. I’m managing to get to and from the bathroom, kitchen, and living room in my fairly small apartment, but it still hurts. Walking all the way down the hall, down the stairs (or standing in the elevator), down the walkway, and to my car is a horrible experience, and that’s before I even go anyplace. I keep thinking I’ll drive to the grocery store, but getting to the car feels too hard right now, never mind actually walking through the store. And the truth is, I’m not able to stand long enough to cook, anyway, so I’m just eating a lot of leftovers from my freezer these days.

The thing is, I want to make a fruit smoothie. And I want to put a banana in that smoothie. I have the rest of the fruit in the freezer, but I need fresh bananas. On a good day, this is easy. I pick up bananas while I’m at the grocery store, or I walk down the street to pick them up. But when walking is impossible, then even a banana is beyond reach.

There are a lot of place I’d like to go this week. I’d like to get to the library, visit a sick relative, and run some errands. But the banana is my measuring stick. If I can’t even manage to get a banana then I know I can’t manage the other things.

So as frustrating as it is, I am staying home. I am sitting and keeping my feet off the floor. And I’m eating oatmeal instead of a smoothie. But one day soon, I hope, I’ll get that banana.

8 Comments | Frustration, Limitations, Pain, Rants, Symptoms, Unpredictable | 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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