Chronic illnesses: they’re not boring

February 16, 2016

Chronic illnesses are a lot of things. They’re frustrating, irritating, disturbing, enlightening, infuriating, unpredictable. They teach us who our real friends are and they teach us about ourselves. But however you think of them, they’re certainly not boring.

Every now and then I’m not sure what to write about on here. Lately I’ve wondered if I’ve just covered it all. After all, I’ve written 587 posts (not including this one.) Some were personal, like my experiences with sex or social security, and some were general, like a news item. But they were all relatable. And they were all about chronic illness.

And now, 587 posts later, I’m realizing how much more there is to write. There are my own experiences as my journey continues, there’s the changing political landscape, and there’s simply everything I haven’t covered yet.

Chronic illness can lie in the background of your life or it can be front and center, or maybe it moves around. But once it’s prevalent, it’s not boring. It effects so many things, big and small. Doctors, hospitals, medications, insurance issues, stereotypes, jobs, strained relationships…. and that doesn’t even touch upon, you know, the actual effects on our bodies! Many of us deal with symptoms daily. We think about them so much, we forget that some people don’t constantly worry about how to sit to avoid a pain or what to eat to get just the right nutrients to compensate for that disorder or which activities can be combine to conserve energy and stave off fatigue. It’s a never-ending game where there’s no winner, but we try not to be losers.

Ironically, I am writing a post about how much there is to say without saying anything specific. Still, I think it’s important to take a moment and think about this. Some of you are bloggers, and you know what I’m talking about. It’s easy to have a day or a week or longer without inspiration. But that doesn’t mean the well has run dry. And some of you aren’t bloggers, and you know there’s so much to say about your chronic illness but you probably don’t have a way of sharing it. The next time you feel that you could never explain your chronic illness to someone and you can’t understand why, just remember that I found a way to write 587 blog posts (over four and a half years) and I haven’t come close to running out of things to discuss yet. That’s a whole lot of information.

Someone is creating an anthology about chronic illness(es) (this post was written a while ago, but she sent an update recently to say that she’s still collecting stories, so you should consider participating!) and some people might wonder how you could write a whole book about them. But we know better. We know this could easily be a 50-part series. Because whatever else chronic illnesses are, they definitely aren’t boring.


Where should I put my body?

February 11, 2016

 

I’ve been sitting too much lately. Way too much. I see all of those studies that say sitting is as bad for our health as smoking and I think, it’s not like I have much of a choice. Still, something has changed.

I used to sit a lot and knew I didn’t have a choice, and it felt right, even though my brain said it wasn’t good for me.

Now I sit a lot and it feels wrong. It feels like too much sitting. My brain said it’s bad for me, but so does my body. My back hurts. My neck hurts. I know I’ll feel better if I move around more.

The problem is, moving more would help my neck and back, but not the rest of me. I don’t have the energy to move more. I do what I can, but between my adrenal problems and everything else, I just can’t do more activity. It would be really bad for me. Recently I had a few days where I did more because I felt up to at the time, and then I paid for it the next day. So I know I need to dial back a bit.

The thing is, it still feels wrong. I sit in front of the computer or on the couch watching tv or in a comfy chair with a book and I’m happy with the reading or writing or watching, but my body hurts in ways that are specific to doing too much sitting.

What’s the answer? I don’t know. I don’t have the energy to walk more. Laying down would hurt in different ways, and would definitely harm me emotionally. Sitting makes the most sense, but it’s too painful.

What about you? Have you had this problem? Do you have any ideas of what might help? Please share your ideas in the comments. I’d love to hear them. One of you might just solve this problem for me and for others who read this!


Trying not to chicken out

January 28, 2016

I’m supposed to travel today and I really don’t want to. And I’m sad about that, because I know I should be excited. But then, I’m trying to get away from shoulds anyway….

We’ve been friends for over 20 years. At first I would visit her. Then I’d visit her and her boyfriend. Then I’d visit her and her husband (same guy.) Then I’d visit her, her husband, and their kid. I loved all of these visits. Sure, they were different. The activities were different and the atmosphere was different, but I always had fun. In the early days I’d fly to visit her. Once we both flew to a city between us, stayed in a hotel for a weekend, and had a fabulous time exploring a new city. For the last 8 years I’ve been able to drive to visit her, which is fantastic. Since I live near her parents, she stays with them when she comes to town and we get together alone or with friends or with her entire family and we always have a fantastic time. Always.

But a few years back, visiting got harder. My health got worse. I’d visit her, her husband, and their two kids, and I’d be thoroughly exhausted. Each visit got harder, just like other things in my life got harder. But still, I visited. Even though each time, I felt the energy draining out of me.

Then I stopped visiting for a long time. I didn’t want to stop, but I just couldn’t manage it anymore. It was around the time I stopped working. In fact, my visit to her house was the last trip I made before I left my job. We went apple picking and had a great time and by the time I got home, I was a mess.

Now I try visiting once or twice a year. Last summer I visited her and her youngest, while her husband was out of town with the two older kids. That was tiring, but not too bad. It was summer, and I feel worse in the summer, so there was that. And now it’s winter, and I feel better in winter, and I’ve got my new sleep machine helping me. But the idea of 3 days with her, her husband, and their 3 kids, is just exhausting to consider, never mind actually doing it.

I don’t want to go. I want to stay home. But I want to see my friend. I wish I could visit for a day, but it too far of a drive. I wish I could stay in a hotel where it would be easier to rest, but that’s not in my budget. I wish I was health, but that’s just not my reality.

She’s told me several times that the kids are really excited to see me. She’s asked what I’d like to eat while I visit. She’s a great cook, and does a wonderful job of making gluten-free foods that I can eat (while also avoiding all of my other trigger foods.) We’ve decided that I will go out with her and the kids either in the morning or in the afternoon each day, but not both. We’ve learned that I can’t handle both. We have it all planned out. But I’m still nervous.

I tried asking myself, “What’s the worst that could happen?” Well, that’s a bad question to ask. I know what could happen. I remember when I visited last winter and I was so sick that first night. Like, the maybe-it-would-be-easier-if-I’d-just-die kind of sick. It was horrible. I’ve felt that way before, but dealing with it in someone else’s home was so much worse. Of course, that’s not the worst, but it’s the most likely. And I can’t stand the thought of it.

It’s almost noon and I’m still in my pajamas. I need to shower, get dressed, eat lunch, pack up my bag, then drive. That will use up most of my energy for the day. And then there’s dinner with the family and 3 kids all wanting my attention at once because I haven’t seen them in months.

I love them. I really do. And I’d love to see them. But I don’t want to go.

Does this sound familiar to you? Please share your experiences with this kind of thing.

P.S. Yes, I have the option of not going. But I want to see my friend and her family. So I’ll go. But I’ve promised myself that if it’s too much, I’ll leave a day or two early. I just hope tonight is ok….


Labels: the bisexual-chronic illness connection

January 13, 2016

Society likes labels. It likes to put us into boxes. Sometimes those boxes overlap like a rectangular Venn diagram. Sometimes they’re similar to someone else’s array of boxes.

A lot of us have complicated relationships with our labels, and I think a lot of that has to 1-13-2016 4-32-57 PMdo with where the labels come from. I was working on a project recently where someone asked, “I have ____. Does that count as a chronic illness?” I was horrified. Why should anyone else define your condition? If you feel you have a chronic illness, isn’t that enough? And yet, I have seen it happen over and over again. Someone is told they don’t really “belong” in a group.

But labels can also be empowering. They can help us quickly convey something about ourselves to others. They can help us learn about the group that we belong to. And one of the things I find most important: they help us find community.

You’re a queer bisexual woman with a chronic illness too!?! Awesome!!

Yes, I’ve heard myself utter those words. It’s so great to talk to someone I can relate to in multiple ways. I love using certain labels because it helps me find my peeps. Totally cool.

What’s not so cool is when other people choose to label me or anyone else. It’s also not cool when they choose to redefine my labels. I’ve heard people say, “Bisexuals are only interested in threesomes.” When I say that’s not true, they disagree. Um, wouldn’t I, as a bisexual, know that better than you, a monosexual?

I’ve heard people say that if you’re not in a wheelchair then you don’t need to use a ramp. When I try to explain why that’s not true, they don’t want to hear it. They’d rather hold on to their preconceived notions than actually learn they might not be 100% correct about something.

It can be infuriating, that’s for sure. And as someone who has a chronic illness and is bi, I’ve been amazed at how much overlap I have seen in these two communities. Both chronic illnesses and bisexuality are often (though not always) invisible to the casual observer. Often, people pretend we don’t exist, either individually (“you’re dating a man so you must be straight now”) or as a group (“there’s no such thing as fibromyalgia, it’s just a made up condition so the pharmaceutical companies can sell more drugs.”)

People like to throw their labels onto us. As if I don’t know if I have chronic illnesses or not. As if I shouldn’t be allowed to define my own sexual orientation.

We both have our labels misunderstood often. Who hasn’t heard some version of “it’s not like that will kill you” when it really could, or “bisexuals aren’t capable of monogamy because when you’re with someone of one gender you’ll always be missing the other gender”? (This last one has the added bonus of marginalizing anyone who doesn’t fit into the gender binary.)

And let’s not forget the joy of having someone condescendingly explain who we are to us. I won’t even bother with a sample quote because it’s just so heinous.

There’s discrimination, and sometimes it’s based on labels that don’t apply to us but that someone assumes describe us.

Then there’s the joy of having someone argue that the label we choose isn’t “right” in some way. Like being told your condition isn’t really a chronic illness. Or the ever-popular, “I don’t think you’re really bisexual, you’re pansexual.”

But wait! Don’t despair! Because having these labels is also truly awesome!

If I didn’t use the term “chronic illness” how would I have found all of you? We all have such different diagnoses, symptoms, and life situations. I could write a blog about having Hashimoto’s Disease, but I wouldn’t get to talk about Celiac. I could write about Celiac, but what about PCOS? Anyone with a different diagnoses probably wouldn’t bother to read or comment. Using “chronic illness” allows us to all connect, and that’s magical.

I feel the same way about calling myself bi. Sure, it means that sometimes I’m shunned in lesbian spaces. But it also helps me to find other bi folks. It means people don’t look at me askance when I mention that cute girl over there, even though they knew I was dating a guy last year. We can share stories and music and movies and books. We can simply find each other.

And don’t forget the research. The health research around chronic illnesses is probably somewhat familiar to you. But did you know about Bisexual Health Awareness Month? The research around health disparities for bisexual folks is super important, but how could anyone conduct that research unless people self-labeled as bi?

I could go on for days about the similarities in the way labels affect both the CI and bi communities so for now I’ll just say, thank goodness for our labels. Despite all of the problems with them, they’ve help me to find some incredible people, and I’m so grateful for that.

Now, it’s time to go fight some more of those damn stereotypes!

How do you feel about labels? What are some of the labels you apply to yourself? I’d love to hear from you in the comments!