When those horrible medical symptoms aren’t medical at all

November 14, 2015

There’s a tipping point. It’s the moment when you feel something odd in your body and just assume that it’s related to your chronic health condition. Before the tipping point you question what it could be. But after that point, you just assume.

Of course, sometimes it’s a medical problem that has nothing to do with a chronic illness, like an injury or the cold that’s been going around.

But sometimes it isn’t medical at all. And then don’t we feel a bit silly? It’s a good reminder, though, that not every odd bodily feeling is part of a chronic illness.

The other day I was really cold. My body doesn’t adjust to temperature changes well. I also have Raynaud’s, and my hands were very white with tinges of blue. I was starting to feel lethargic. For a while I wondered what I had done to stress my thyroid or adrenal glands. But eventually I noticed that my radiators were cold. I checked the temperature in my apartment and it had dropped. I emailed my landlord and, sure enough, there was a problem with the heat that they were working to fix. Huh. I was looking for thyroid and adrenal triggers and it was really a busted boiler. Oops!

Sometimes my vision gets blurry. I used to always worry about what could be causing it. All sorts of terrible scenarios would run through my head and I’d be very nervous. Now I know better and I immediately check the two most likely culprits: it’s always either a smudge on my glasses, or I forgot to switch my reading and distance glasses when I walked away from the computer. Oops!

What about you? Have you thought you were having some horrible symptoms only to find out that it was something completely benign and non-medical, like a smudge on my glasses? Please share in the comments! I think we could all use a little comic relief and the reminder that not all “symptoms” are medical.


You can choose to say no, but I can’t choose to say yes

October 22, 2015

“I have to do this and this and this and this and then there’s that trip tomorrow…. I mean, it’s fun, but it’s still a lot, you know?”

All I could do was nod my head. What could I say? I remember what it was like to be so busy and feel like I couldn’t keep up, but my friend was talking about how he was so busy, that tomorrow’s day trip would be overwhelming. The day trip that he and other friends of ours take every year. The day trip that I want to go on every year. The day trip that I miss every year because of my health problems. The day trip that he could say no to, but chose not to.

That was the hard part for me. I just kept thinking, “You could always say no.” I remember being in that place, and feeling like I couldn’t say no to things. Now I see what a luxury it is to have the choice! Because even when it’s something you really want to do, you can always say no. But you can’t always say yes. At least, I can’t always say yes.

There’s a certain perspective you gain when your body is constantly stopping you from doing things you want to do, things that your peers can do effortlessly. I wish I could explain it to my friends. I see things so differently now. It’s not necessarily better, and the cause for it totally sucks, but it’s different.

It’s easy to say what I would do in the same situation, but the truth is, there’s no way to know. Maybe it’s be just as over-committed as everyone else seems to be. All I know is that right now, I sure wish I had the luxury of choosing to say yes to invitations. I just hope everyone else remembers they have the option of saying no.


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?