Should I try to do more?

December 28, 2015

There’s no guide. Not only do we have to decide for ourselves what’s “right” but the only way to figure it out is by trial and error. And who wants to risk the error part?

Friends have been pressuring me to visit them more. Part of me feels like I should be able to do it. But then other parts of me think it would be a very bad idea. But maybe I should try anyway? I used to fly 3-5 times each year. Now my last flight was 5 years ago. It’s time. But is it?

I’ve done a lot these last few days. Today is my day to rest. But I look at my “to do” list and there’s so much that I need to get done. So maybe I should get groceries today. Or maybe that’s too much. But I’ve been doing better lately, so I should try to do more. Or maybe that’s too much and I’ll regret it.

I know from experience:

  • If I don’t do enough, my abilities will atrophy, and I’ll feel capable of doing less.
  • If I do too much, I’ll feel horrible, it will take me days or weeks to recover physically and longer to recover emotionally.
  • Either way, I won’t know if it’s too much or too little until later, after it’s too late to change anything.
  • The doctors can’t help me with this. It’s up to me to decide.

Crappy options, right? There’s a sweet spot, an amount that’s just right. I’m looking for that, but I have no idea how to find it.

I think about how much more I used to do before I got sicker 4 years ago. I worked full time, traveled, did errands, went out with friends. I think about how much less I did 3 years ago when I socialized very little and didn’t leave the house more than 2 days in a row, if that. I think about what my friends with chronic illness can do. I think about what they can’t do. And I still don’t know what I should be doing.

I wish this was a conundrum I faced every few years, but it’s not. It’s constant. Every few months this seems to come up. I’m super aware of it now. I feel horrible in the hot summer months, so I spent that time at home, resting, trying to get by. Then I had an accident and there went autumn. Now the new year is approaching and I am just beginning to walk around again after 6 months of reduced activity.

I need to do more. I’m in recovery from surgery, so I’m supposed to walk more and get back to where I was before. But where was I “before”? I honestly don’t remember. Am I aiming for where I was at right before the accident? That was summer, and I usually do less in the summer. Should I am for my typical winter activity level? Should I push to do as much as I can? But I know that’s a bad idea – doing as much as I can in the short term will mean burnout in the long term.

Maybe going grocery shopping today is doing too much. Or maybe staying home today is doing too little. There’s no magic answer, no one to tell me what’s right, no official guidelines. I just have to guess.

For now I’m going slowly. I’m telling my friends I won’t be getting on a plane yet. But I wonder, maybe this is the year that I finally will? Or is that too much?

How do you figure out what you can and can’t do when the boundaries keep changing? Please share in the comments. Maybe one of your tips will help me and others!

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

Taking on something extra: is it worth it?

December 25, 2015

It’s a common problem when you have a chronic illness: how to divide up your energy. And it’s hard to decide if it’s worth taking on anything new 12-25-2015 5-38-30 PMthat isn’t completely necessary.

Of course, there’s no way to make a consistent plan. What we need to do varies from one day to the next, and how much energy we have varies too. That’s why it felt indulgent to me to add something new to my routine.

Getting dressed is tiring. Showering first is even more tiring. But choosing to add makeup? That just seems unnecessarily burdensome. Why bother?

Still, more and more lately I’ve wanted to try wearing some eye makeup, and this week I finally took the plunge. A friend helped me figure out what to buy, and finally, 20 years after most of my female peers, I learned how to put on eyeliner.

As a teenager I had no interest in makeup. As a 20-something it seemed like an unnecessary waste of time, energy, and money. In my early 30s it felt like too much of a bother. I started to get curious about it just as my health got worse and I simply couldn’t be bothered. Now I’m feeling better, but still, is it worth the effort?

So far, putting on eyeliner is pretty easy. Taking it off is more of an issue, because by the end of the day I’m tired and I don’t want to have to stand at the sink to wash it off. Still, I’m going to keep trying it a bit longer. Tomorrow I’ll even try adding eye shadow!

I may give this up in a week, a month, or a year. I might feel overwhelmed. It might not work out for any of a dozen reasons. Still, at the moment I’m glad I’m trying.

Wearing makeup is a small thing. To some women it’s a non-negotiable. To others it’s silly. For me, it’s just something I want to try, and I don’t want my illness to stop me. We’ll see how that goes…..

11 Comments | Expectations, Fatigue, Frustration, Limitations, Rants, Symptoms, Unpredictable | Tagged: , , | Permalink
Posted by chronicrants

Yes, I’m one of them

December 9, 2015

I was talking to some friends about some tough decisions I need to make about benefits. One of them said, more than once, that I might need them for a while, but those benefits aren’t meant for my “demographic.” They’re not for people like me. But the thing is, they really are.

I understand why she said it. We both grew up in middle class families in the same middle class neighborhood. We both went to college, then graduate school. We both got middle class jobs. We followed all the “rules” and now we’re supposed to have our happy middle class lifestyles. She is a stay at home mom. Her husband earns a very large salary. She has that middle class lifestyle.

I don’t.

There’s an idea that benefits are meant for other people. The people who aren’t middle class. The people who don’t have jobs. Well, as it turns out, that’s me.

Those benefits are for people with physical and mental illness. People who can’t work. Yup, me again.

People think they’re for people who are older. But they aren’t. They’re for people of all ages. Including people in their 30s like me.

My friend means well. She tries to understand. She is one of the only people in my life who knew me before I was sick, and she understands my health problems better than most. But she can’t accept that it’s permanent because she doesn’t want to. It hurts her to think of me in pain. I get that. I feel the same when someone close to me is in pain; I pretend it can’t be serious or permanent, even when it obviously is. That’s how she feels about me.

But it doesn’t change things.

So yes, I’m one of those people. The other ones. The ones who aren’t us. Except sometimes they are. Sometimes they’re one of us. Sometimes we’re one of them. It doesn’t matter if you grew up rich or poor or somewhere in between, whether you got advanced degrees or didn’t finish high school, you can be too sick to work. And when that happens, benefits like food stamps, Medicaid, and section 8 are helpful. Even when we don’t want them, we need them.

Like it or not, we’re one of them.

6 Comments | Expectations, Frustration, Insensitive, Isolation, Limitations, Politics, Rants, Relationships: Family & Friends & Dating & Sex | Tagged: , , , , , | Permalink
Posted by chronicrants

Answering “What’s new with you?”

November 29, 2015

What’s new? It’s a simple, standard question. We all ask it and have it asked of us dozens or hundreds of times each year. Sometimes it’s like saying “Hello” and the asker doesn’t expect an answer. But sometimes they do. And sometimes, the answer is complicated.

I’m not talking about health stuff here. Well I am, but not directly.

When someone asks “What’s new?” sometimes what’s new is bodily issues. That’s probably true of anyone with a chronic illness. But sometimes it’s health-related stuff. When someone asks “What’s new?” should I tell them about my uncertainty about Section 8, fights with health insurers, problems with doctors, and about how I’m running out of room to store medical supplies at home? Should I explain my concerns around earned income and Social Security or the way that Medicare and Medicaid work together to cover costs but sometimes they fail, even when it means having to give a 20 minute explanation of the entire system just so it makes sense?

It’s like back in the days when I used to work. If someone asked me how work was going, I’d say it was good or bad, or maybe tell a funny story, but I wouldn’t talk about the boring issues with vendors or the technical aspects. I wouldn’t use terminology that I first had to define.

And that’s how it is with a chronic illness. Even when I’m not talking about my actual health, it’s hard to answer the question because so much of what’s happening in my life is health-related in one way or another.

So now I’m asking you: How do you answer the question, “What’s new with you?” Please let me know in the comments!

12 Comments | Educating, Expectations, Frustration, Isolation, Rants, Relationships: Family & Friends & Dating & Sex, Support, Thoughtfulness | Tagged: , | Permalink
Posted by chronicrants

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