“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!

The reality of a spoonie’s mornings

September 22, 2015

I feel like my day has just started, but when my mom calls and says she’s just gotten home from her zumba class, I remember that for most people, the morning is half over. I chat online with a friend who’s sitting in her office 2 miles away, who has already dressed, gotten the kids off to school, managed her commute, and turned in a project to her boss, as I’m about to get breakfast. And the thing is, that’s ok!

I’ve never been a morning person. Now I know that I have a circadian rhythm shift, so of course I hated mornings. But I didn’t know that then. All I knew was the I wasn’t about to do anything more than I had to in the mornings. I loved turning off my alarm on weekends. When someone suggested I find time to work on a project or to exercise but doing it before work, I told them there was 0% chance of that happening, and I never understood how anyone could do things early in the morning.

Now that my sleep is a bit better, I can start to understand. My brain starts to function well within 1/2 hour of waking up. My body, though, is slower than ever.

As I have started to consider the possibility of earning a bit of an income, I’ve been reading books and blogs on solopreneurship. (Solopreneurship is entrepreneurship that’s done on your own. Often it’s just one person working from home or from a cafe with a laptop.) Many of them suggest being super productive by waking up an hour earlier than usual and using that extra time to get more work done. Doesn’t that sound nice? Gee, why don’t I just do that? Oh, right, because my body doesn’t work the way it should. I think it’s great advice…. for other people.

My mornings typically go something like this:

  • Wake up 7:30-8am, sometimes with the alarm and sometimes without it.
  • Read for 1-1.5 hours.
  • Take pills.
  • Get out of bed. Head to living room. Sit at computer.
  • Check Facebook for a while.
  • When thyroid pills have finished dissolving under my tongue and I have enough energy, get up for breakfast. This is usually around 10am.
  • Return to computer. Continue on Facebook and other sites (and maybe some solitaire) while eating breakfast, with the blue light pointed at me.
  • Around 11am-1pm finally get up, get dressed, brush teeth, and try to do 1 or 2 productive things like buy groceries, wash clothes, or straighten up the living room.

This might not sound like much of a morning to most people, but it’s what I can manage. And that’s ok! Sometimes my brain wants to do more. Sometimes my body has the urge to go out and enjoy the lovely weather. But it’s rare the two line up.

One day I’d like to get an earlier start to my days. I’d love to be up and doing things by 10am. That would be amazing! The reality is that it might never happen, so I have had to accept that.

What are your mornings like? Whatever they are, they’re ok! Because you’re doing the best you can, and that’s all you can ask of yourself.

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?

Why I’m scared to work

September 14, 2015

Up until a few years ago, I just assumed I’d work a full time job. At one point I quit a job where I was miserable and I took some time off before going back to work, but of course I assumed I’d get another job, and I did. I always worked.

Until I didn’t.

I’m coming up on the 4 year anniversary of when I left my job for what I thought was a few months to rest and recover. Little did I know….

A lot has happened in those 4 years. At the start, doing any sort of work was out of the question. It took every ounce of energy I had to cook dinner or read a book. I didn’t have the physical or mental ability to do any sort of paid work.

Then slowly, I saw some improvement. I began to leave the house more. I did some volunteer work from home. I did favors for friends that involved using my brain in ways that I hadn’t in a while. My cognitive abilities still weren’t what they had been, but they were better. My physical health had improved, too.

As I felt better, I wanted to do more. I started thinking about small ways to make money. I sold my crafts. I did some more of the consulting that I’d let fall away. Someone asked if they could hire me to help them with a project and I said yes. It felt so good to get paid! Still, I was no where near being able to cover my bills. I needed something bigger.

I thought about that person who hired me out of the blue. I thought about the clients I had. That was good money with a flexible schedule and I could do most of it from home. In fact, with a little creativity and Skype, I could probably do it all from home. So how could I get more clients?

I don’t have all the answers, but I do have an initial plan. I’ve been reading a lot, I’ve listened to podcasts, and I joined Facebook groups of other people trying to make money in similar ways. The difference, of course, is that most them are working full time and they work on their side businesses in the mornings, after work, and on weekends. Even so, they probably put in a lot more hours than I can. On a good week I can do 5-10 hours, and on a bad week I’ll be lucky to do 2. So I figure that if they can earn good money in a matter of months, then I should be able to do the same within a year.

With a lot of the research done, I crafted my plan. And then I got stuck. I was scared. At the beginning, I probably won’t earn much, but what if I begin to earn more? How will I handle that? If I earn more than $780 per month for 9 months, and those months don’t need to be consecutive, then I’ll lose my social security benefits. That means I’d better earn enough to make up for that! But actually, that’s not the part that scares me.

No, what scares me is 3 years from now, and 10 years from now. If I can manage to earn a few thousand dollars per month doing work from home that I somewhat enjoy and that doesn’t strain me too much, then yay! Fantastic! Perfect! But what if I can’t keep it up? What if 3 years from now I’m back to where I was 4 years ago, completely unable to do any paid work? And I’ll need to reapply for social security. And what if I don’t get it? Or what if that happens 10 years from now? Or in 10 months? Or 6 1/2 years? Will I be living always in fear of being unable to support myself?


But what if I don’t do this? What if I stay on social security without working? I’ll be watching my savings dwindle as I use them to pay for all of the things that my benefits don’t cover, like medical expenses, electricity, some of my groceries, car expenses, part of my rent, everything related to my car, and any sort of entertainment (yeah, right!) And what will happen when my savings run out?

So I have to do this. I have no choice. If I could work a regular hourly job then I could make sure my income stayed consistently at $779, but that just isn’t an option. So I know I need to do this.

But I’m still scared.

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