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!


10 great things about you

February 7, 2016

Sometimes with chronic illness it’s easy to focus on the bad stuff about ourselves and forget the good stuff. I’ve done it far too many times over far too many years. A couple weeks ago I wrote about chronic illness and self-esteem. Based on the response to that 2015-07-09 12.01.45and other articles I’ve written about this, I think a lot of you know what I’m talking about and you’ve had the same problem.

So today we’re changing that. I want you to do two things.

First, write down 10 great things about yourself. Write them, type them, record them, dictate to someone else who will write them. Your format doesn’t matter. Just do it. If it’s too hard, then start with 1, build up to 3, and try to get 10 over the next few weeks. These aren’t about your looks but about who you are as a person. Think about what makes you great. Keep that list and reread it every month, every week2015-11-01 14.07.39, every day, whenever you feel down – or whatever works for you. Add to it whenever you think of something else that should be on the list. When someone compliments you for something specific, add it.

Second, write at least one of those things in the comments below. You can write more than 1 if you want, but please share one. This 20120917_181648will help you and others in so many ways. It will show others that it’s possible to still be awesome when you have a chronic illness. It will give them ideas of things that are great about them, too. And when you declare to the world (or at least to the readership of this blog) that you love these things about yourself, you’ll be taking it heart and believing it more strongly than ever. So go for it!

To be fair, I figure I should probably share my own list. So here goes.

  1. I’m a good daughter, always there for my parents and helping them when I can.
  2. I’m a good friend. Even when I can’t do much physically, I listen, I offer advice, and I’m there for my friends.
  3. I’m a great crocheter.
  4. I go out of my way to help others, even people I don’t know very well.
  5. I’m a good cook. Ok, I have a limited range, but I do a good job with what I know.
  6. I’m strong. Life has made things tough for me, and sometimes I’ve given up temporarily, but eventually I always go back to trying hard to get better (or to at least not get worse.)
  7. I try my best to be a patient and health advocate for others.
  8. I’m good with kids.
  9. I’m interesting. I read a lot and have different hobbies, so I always have a variety of things to discuss with people. (Hint: this is handy for changing the topic when I don’t want to talk about my health.)
  10. I appreciate nature. Put me at the shore and I can happily sit and watch the waves for hours. Even pictures of trees make me happy. I always stop to smell the roses (literally!)

Ok, now it’s your turn. Take some time and create your own list. And remember to reread it whenever you feel a bit down.


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….