Am I doing enough?

December 15, 2015

A friend called me and was upset. She had just spent a while talking to a friend of a friend with the same diagnosis as her, but who was doing a lot better because she had done a lot more research and tried many more treatments. My friend felt like she wasn’t doing enough. I knew that feeling well. I’ve had it many times myself. Maybe you have, too?

I think it’s common to feel that way. After all, we’re taught that when we’re get sick we go to the doctor and get better, so when we don’t get better right away, we wonder if it’s our fault. Then we read about someone who was magically cured through their own research and we wonder why we haven’t done the same.

Of course, not every illness is easily cured by a doctor. And those magic cures are often individualized treatment plans that were figured out through years of research and trial and error. We see the results, but we don’t see the backstory. Meanwhile, we’re all in the middle of our own backstories.

The thing is, if you’re doing all that you can, that’s enough. It has to be. I know people with my same diagnoses who can not only work, but jog every day and go hiking. That’s great for them, but I can’t do those things and thinking I “should” isn’t helpful. In the same way, someone might be able to do a lot more research than I can. And that’s ok. Someone else can’t do as much as me, and that’s ok too.

About 4 years ago, I started to do my own research. It was hard. Damn hard. I was so fatigued that I could rarely read more than 5 pages at a time without falling asleep. The brain fog was so bad that I had to read each paragraph multiple times before I understood it. Often I read a few pages, fell asleep, woke up with the book on my lap, and had to reread what I’d just read because I’d forgotten it all. But I kept going because I was determined. It paid off, because it led to me doing so much better. Sounds like something everyone should measure up to, right?

What you didn’t see (because I’d only started this blog earlier that year) was the several years before that where I’d given up hope. You didn’t see the years, yes YEARS, that I hadn’t wanted to do any research at all and had resisted encouragement from others. You didn’t see how long it took me after doing the research to actually put any of it into practice. And yes it has helped, but I’m nowhere near “better.”

Would my health be better now if I hadn’t put off doing research for years? Maybe. Maybe not. A lot of what I found wasn’t available 5 years earlier. I wasn’t sick enough back then to be willing to try some less conventional approaches. And it doesn’t matter. Because I did what I felt ok with at the time.

I wasn’t ready to do the research then. And that’s ok. I was doing the best I could. Physically I put all I had into working, exercising and physical therapy, taking care of myself, and having just a bit of a social life. Emotionally, I didn’t have the capacity to do the research. And that’s ok. I did as much as I could. So it was enough.

Sooner or later, you’re going to feel like you’re not doing enough. When you do, remember that if you’re doing your best, that’s enough. One day your best might be hiking up a mountain. Another day your best will be brushing your hair. Whatever it is, it’s enough.

As for my friend, she’s feeling a bit better now. I told her everything I’m telling you now, and then some. I pointed out that the person she spoke to had had her symptoms for many more years than my friend had. She’d had more time to try things. She’d had more money available to try things. We don’t know how severe her symptoms were or weren’t. And I pointed out that my friend has recently tried several new things and is currently waiting to see if they work. She’s already seen some small improvement. Waiting isn’t fun or exciting or sexy, but it’s necessary. It’s nothing to feel bad about because it has to happen. The person she spoke to had a lot of time to try things out and wait to see what happened. There’s no point in my friend feeling bad because her “during” doesn’t compare to someone else’s “after.”

So what about you? Do you ever feel like you’re not doing enough? And when you do, how do you handle it? Please share your thoughts in the comments.

2 Comments | Educating, Expectations, Frustration, Healthcare, Limitations, Raves, Relationships: Family & Friends & Dating & Sex, Support, Symptoms, Unpredictable | 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

“Have you tried…..?”

September 28, 2015

We’ve all heard it. A well-meaning friend, a nosy stranger, a nervous relative, a new acquaintance hears about your health problem and asks, “Have you tried X?”

The first time you hear it, you probably think it’s nice they’re trying to help. Maybe they even suggest something you’ve never thought of. The 5th time you hear it, it’s a bit annoying, but at least they want to help, right? The 782nd time you hear it, you’re fed up and trying not to yell at them about their ignorance.

But how do you really respond?

A friend and I were sharing stories about this yesterday. She said how she always wants to say, “Do you really think you’ll suggest anything I haven’t already thought of?” and I said that I do actually say that. She was shocked that I say it. I was shocked that she doesn’t say it.

The thing is, why bother pretending? I’m not mean about it, but I do point out that I’ve had my health issues for more than 20 years. I read the news. I follow health blogs, Facebook groups, and twitter accounts. I read library books and newsletters. I talk to friends with similar health problems. And let’s not forget, I just happen to see many doctors. So do they really think they’re going to suggest anything that I haven’t already thought of or had suggested to me by a professional? I point all that out, nicely, and no one is offended but they do stop offering me advice. Win!

What about you? How do you handle it when someone asks, “Have you tried….?” Please share your approach in the comments. I’d love to know what everyone else does!

6 Comments | Educating, Frustration, Insensitive, Intrusions, Kindness, Rants, Relationships: Family & Friends & Dating & Sex | Tagged: , , | Permalink
Posted by chronicrants

We need to talk about poop

September 18, 2015

There are certain things we don’t talk about publicly, but we know that they aren’t being talked about. Or maybe they’re occasionally mentioned, but only in vague terms or to certain people. You’re probably thinking about things like money and sex right now. Would you ask a stranger, or even a friend, how much they earn for a living? There are some friends I’d ask, but very few. Would you ask them which sexual positions they prefer? How about asking where their erogenous zones are?

But there are things we talk about even less than money or sex, and one of those is poop. We just don’t talk about it. But we need to.

My doctors over the years have asked me about my sex life. We don’t get into details, but they ask if I’m sexually active, if I’m care, if I need testing for STIs, etc. But they never asked about my poop. You’d think a primary care physician would ask at a checkup, “How often do you have bowel movements?” But no, not once.

I was an adult before I learned that I’m supposed to poop Every. Single. Day! Who knew? Not me. How would I know, when it’s something no one talks about? Around that time I also learned that loose stools aren’t normal. Sure, I felt lousy and pooped erratically, but I had no idea these were signalling a problem that needed to be addressed.

As it turns out, poop is important! The frequency, color, density, and shape of your stool says a lot about your current health. It’s something that I believe every doctor should ask about at an annual checkup, and certainly every gastroenterologist should ask these questions. Patients should be encouraged to keep a poop diary for just a few days each year, right before their checkups, so they can accurately answer these questions.

In my case, it would have been helpful if someone had realized much sooner than days without pooping and then a half dozen bouts of diarrhea in a day were, you know, a Bad Thing! And that’s just me. What about the thousands of other cases out there? I know some of you have had gastrointestinal problems. How long did it take for someone to realize there was a problem? Would they have figured it out sooner if they’d been asking you about your poop?

Of course, the problem isn’t just the lack of discussion at medical appointments. We don’t talk about it in general. It’s not like I ask a friend about their poop habits or tell them about mine. There’s no common knowledge here. There’s a running joke on The Big Bang Theory about Sheldon scheduling his daily bowel movement, and how he finds it very odd that others have bowel movements whenever the urge strikes them, without any schedule at all. Ok, maybe Sheldon’s approach is unusual, but at least he makes sure he has a daily, healthy bowel movement and he isn’t afraid to talk about it. The part I find interesting is how off-putting it is for everyone else when he discusses it. Sure, maybe it isn’t something to bring up at dinnertime, but aside from that, what’s so bad about it?

There’s less embarrassment around a bloody nose, burping, hiccuping, crying, peeing…. all things that involve natural bodily processes and/or fluids. Why is that? Why is it that someone can say, “I’m going to pee,” or “I need to take a whiz,” and that’s ok? But the moment someone says “I need to go poop,” or “I need to take a dump,” it’s considered inappropriate? Hell, some people try not to poop at their date’s house for the first several months of dating!

I think our society has gone way overboard on its aversion to any discussion whatsoever of poop. It’s time for that to change. I say, let’s discuss pooping just like any other bodily process. I highly doubt it will hurt anyone, but it may just help a whole lot of people.

What do you think?

4 Comments | Educating, Expectations, Frustration, Gastrointestinal, Healthcare, Pain, Rants, Symptoms | Tagged: , , , , | Permalink
Posted by chronicrants

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