What would you say is “real” about chronic illness?

July 10, 2014

I thought about starting this blog for a while before I actually did it. What finally pushed me to get started was one too many “inspirational” stories. You know the kind. Someone who had a leg amputated climbs a mountain and we should all be inspired blah blah blah. Now, I think it’s great that someone can do that. What bothers me is that it gives the impression that 7-10-2014 5-46-47 PMwe can all get over our disabilities if we just try hard enough. Yeah. That’s just not how it works.

I didn’t know how many others felt the same way, but I wanted to write about the reality for me. I wanted the people close to me to understand a bit more about how it really works. And at the same time, I wanted other people with disabilities and chronic illnesses to see that they weren’t the only ones suffering on the couch instead of climbing mountains. It turns out I wasn’t the only one who felt that way; my most-viewed and most-commented on articles are the ones about things we don’t usually discuss publicly, like pooping on a guy during sex, boob growth from Prednisone, feeling guilty about making others worry, the frustration of not knowing why I feel so crappy, the frustration of seeing doctors who won’t or can’t help. I bet you’re nodding along to at least one of these. And I bet at one time, or maybe even before you read this, you thought you were the only one who felt that way. I know I did. It’s sad how alone we can feel with these illnesses.

That’s one reason I love the idea of a bunch of people sharing stories all in one place. Blogging is great, but I think we all know it can be hard to follow multiple blogs. And when you don’t even know what’s wrong with you, how do you know which ones to follow? That was my problem for a long time (but with books, in the days before blogs came out.) Plus, maybe I’m old-school, but I love the idea of a book. So I don’t know about you, but I’m going to participate in this project for an anthology about chronic illnesses. The hard part will be deciding what to write about! There are so many possibilities to choose from!

I don’t usually write posts about projects like this, but I also don’t usually participate in them. And this is also my way of helping out with a signal boost. Anthologies usually don’t get published unless there’s significant participation (dozens or even hundreds of articles submitted) and under “How you can help” she asks people to pass along the word about the project, so at least by writing this, I’m doing my part (plus I’ll post to Facebook and Twitter, too.) If you want to help spread the word, you can share the link to this blog post or to the project itself: http://chronicillnesstruths.tumblr.com/aboutthebook

If you’re thinking about writing, consider this line taken from the “How you can help” section at the end: ” If you want to see more voices like yours in books like these, here’s your chance!” That’s good enough for me!


The “Is it worth it?” analysis

June 29, 2014

I went dancing! I haven’t been dancing in ages, and I hadn’t planned on going any time soon. But there was a street party and it looked awesome and I was with friends…. so why not? And when I say “street party” I mean a serious street party. A2014-06-27 20.36.49 major road was blocked off. There were spotlights on roofs and funky colors displayed on city hall. The music ranged from club remixes to motown to disco to whatever else you can dance to. There were congo lines in the street. A beach ball was being tossed around through the crowd. And the weather was cool and pleasant and I felt decent. So why not?

Well, I’ll tell you why not. Because pain. Because fatigue. Because sick body. Yeah, that.

But it looked like so much fun! So I asked myself, “Is this worth it?” And then I continued to ask myself that question every five minutes for the next 2 hours. Sometimes I came close to going home, but then I decided it was worth staying. The question wasn’t whether or not I’d feel horrible later or the next day. I knew I would. There was no question about that. But if I never did anything that made my symptoms worse, I’d never do much of anything (including typing this right now.) Some things aren’t worth the extra pain, fatigue, nausea, etc., but some are. And this was.

The "Is It Worth It?" Graph

The “Is It Worth It?” Graph

At a certain point, I knew I was reaching that point where it wasn’t worth it anymore, so I headed home. The fallout wasn’t too bad. I felt lousy the next day, but not as horrible as I’d have expected. I’m still recovering, but it’s going well. And I have no doubt: it was totally worth it!


Making the good days into great days

June 25, 2014

It’s been one hell of a week. There’s a lot I could write about, both good and bad. I choose to focus on one of the better parts of the last week.

They say old friends are the best friends. I don’t know if that’s true for everyone, but it is for me. I have a lot of wonderful friends, but the ones I’ve known since childhood are just amazing. Part of it is that we’ve known each other for so long. We’ve seen each other through sicknesses, marriages, children, graduations, job changes, big things, small things, and everything else. Part of it is that they just happen to be really wonderful human beings. And the other day we were all in the same place, at the same time.

We don’t have many reunions. It’s gotten harder as everyone has had kids. I can’t imagine how much harder it will be if more people more away, or if people move farther than driving distance. It had been over a year, and we were so excited to see each other! As my mother said when she saw the photos, “The smiles on everyone’s faces just says it all.” She’s right.

I was nervous about my health leading up to the reunion. In general I was worried about how I’d feel in the heat of late June (though everyone agreed to keep the party indoors in air conditioning if I needed it.) More specifically, as the time came, I was feeling particularly lousy. I got incredibly lucky with the weather; not only was it an unusually great June, but the days leading up to our get-together weren’t hot or humid, and the days of were good, too. That helped a lot. Still, I felt horrible for other reasons. I won’t give the full back story here (like I said, I’m focusing on the good things,) but basically there were adrenal problems that triggered all sorts of symptoms and my supplements just weren’t doing the trick.

If this had been any other gathering with friends, I would have simply cancelled. But I’d been looking forward to this for many months and I wasn’t about to miss it! So for two days I ate very little, I took extra adrenal supplements, I adjusted my sleep patterns, and I just pushed through. I felt lousy, but I hid it the best I could. Everyone knows about my health issues and they are the most supportive friends I could ask for. But just once, I wanted to have conversations that didn’t even touch on my health. So I hid how I felt. And I had a great time. I had so much fun with my friends, that I was able to ignore my aches, pains, nausea, and the rest for most of the night and the next day. I got down on the ground, I held babies, I fetched things for others, and I faked it til I made it – and it worked!

Pushing through sometimes works for me, but it’s rare. Very rare. Incredibly rare. I-can-count-it-on-my-fingers rare. But if it’s going to happen just once, I’m glad it was for those days. They were just fantastic. I couldn’t have asked for better. And I’ll be holding on to those memories as I anticipate our next reunion. Hopefully I won’t have to wait another year! And hopefully I’ll feel ok.


A little petting goes a long way

June 17, 2014

It wasn’t hard to see the pattern: I would pet an animal, usually a dog, and feel really happy afterwards. It’s probably been that way my whole life, but I’ve been noticing it more over the last few years. I think that as my health has gotten worse and PoochI’ve been leaving the house less, the joy of being around pets has been more pronounced.

The guy on the right is awesome. He almost always makes me feel better. But I don’t get to see him very often. (And yes, there’s a dog under all that fur!) I need to find a way to pet dogs more often.

Some days I don’t leave the house. Other days I just drive to a doctor appointment or do the grocery store. But when I’m able to walk around my neighborhood, I often see people walking their dogs. Like a little kid, I walk up to strangers and ask to pet their dogs. I’m friendly, and I tell the owners how beautiful/cute/sweet/smart their dogs are, so they’re happy to chat while I pet. This helps, but it’s not enough.

I’ve been thinking that since I can’t care of a  dog myself, maybe I should find a way to volunteer at a shelter. With my health issues, of course, I wouldn’t be a very reliable volunteer. But when I saw dozens of cute pooches at the Pride Parade this weekend, I just knew I had to try. Businesses of all kinds set up booths at the festival that follows the parade. Several sell gear for cats and dogs (rainbow bandanas, rainbow leashes, etc.) There were also a couple of nonprofits that work with animals. I was familiar with one of them, so I asked about volunteer opportunities. It might be a good fit.

I’m still nervous about trying to commit to something when I can never be sure in advance which days I’ll be able to leave the house, but it’s sure with trying. Because after petting those dogs at Pride I sure felt a lot better!