Getting a break from the nightmares

August 17, 2018

While I have had symptoms of chronic illness for over 25 years (wow, that makes me feel old!) I only started having recurring nightmares in more recent years.

First there were the dreams where I felt the impending diarrhea and couldn’t find a bathroom, then when I finally found a bathroom the toilets were either set way too high on the wall (like, 4 feet off the ground!) or there were no doors on the stalls. I was trying to hold it in and feeling more and more desperate, but I couldn’t find a usable toilet that I felt comfortable with. I always woke up feeling stressed out and anxious.

Then there were the dreams where I’d be having a lovely time with family or friends. We would be passing food around the table and without thinking I would take a bite of bread or a cracker and after swallowing I would realize that I just ate gluten! Again, I would wake up stressed out and anxious. And wondering if I had really eaten gluten.

The dreams didn’t happen nightly or even weekly, but they kept returning. And no wonder. I was fastidious about avoiding gluten, but somehow I occasionally was glutened. And there was always the fear that I would slip up and eat it by mistake. There were multiple times I needed a toilet desperately and had trouble finding one. These were real life problems.

And the thing is, they still are. I haven’t been glutened in a while, but it’s happened this year, and I’m more nervous than ever about avoiding gluten. As for the diarrhea, I’d love to say that’s a thing of the past, but it’s not. It’s less frequent, and I’m incredibly grateful for that, but it still happens.

So imagine my surprise when I realized the other day that I haven’t had either of those dreams in months! I was free!

Will I ever have those stress dreams again? I have no idea. Even if I don’t, maybe there will be others. Again, I have no idea. All I know is that I’m not having them NOW!

I would love to say it’s because I’m less stressed out, but I’m not. In fact, lately I have been feeling more overwhelmed than I have in a long time. But at least I can get some rest in my dreams. I guess that’s a start.


Going public is like coming out over and over

September 13, 2017

Once upon a time, no one knew I had health problems unless I told them. Ok, that’s not entirely true. There were signs. It’s just that most people didn’t pick up on that signs, or I could shrug them off as an injury or something. It was easy to lie.

Then I decided to write a book.* Now, when you Google my name, that book comes up. And it’s all about having chronic illnesses.

This has been such an interesting experience. It makes my journey public in a way it never was, because even though most people don’t Google my name, I know that they could. And that leads me to think and speak about my health in different ways.

Take last night, for example. I was giving a presentation in front of a group on a different topic entirely. Someone asked a question and I was answering it with a few examples. And then I mentioned medical stuff as a relevant example. There was was, in front of a small group, pointing at a screen, and looking completely healthy except for my knee braces. And I felt odd mentioning my health, but it was relevant. And I even said, “this is no secret – if you Google me, you’ll see the book I wrote on this topic.” And I saw some eyes move south to those knee braces.

It’s like coming out. I joined an online dating site a few months ago. I was taking a walk with a neighbor and she was asking me about it. We didn’t know each other well, but were friendly. She asked if I had met anyone and I said I’d met a couple interesting people. She asked about them, and as I mentioned the man, everything was normal. When I mentioned the woman, I saw her hesitate. I watched her brain churn as she processed that bit, and then we moved on. With other people, where there’s context, I might directly say that I’m bisexual. But no matter what, if the topic is going to come up, I need to come out over and over again, because whether I’m dating or single, no one will know I’m bi if I don’t mention it.

And every time, I wonder how the other person will react. Will they be accepting? Will they be jerks? Will they ask the same old tired questions?

Just like mention my health problems. Every time, it’s necessary to specify what I’m talking about. Every time, I wonder how they will react. Will they be accepting? Will they be jerks? Will they ask the same old tired questions?

Sometimes I want to wear a sign on my head, or print business cards to hand out: YES, I HAVE CHRONIC ILLNESSES AND NO, THE DETAILS ARE NOT YOUR BUSINESS. Except that now, with the book, some of the details are out there. So they could be your business. Still, it doesn’t mean I want to talk about it all the damn time.

But you see, there’s also the part we don’t usually think about: it’s freeing! Every time I start to question whether or not to mention something, I remember, it’s out there anyway, so why not talk about it? Is it ok to share this? Might as well. Is this a secret? Apparently, not any more.

Again, it’s like coming out. I don’t have to watch my pronouns anymore. I can just speak about past loves and lovers like anyone else would. Sure, I have to use my judgement for safety. Yes, some people will be jerks, but there aren’t any secrets.

That isn’t to say I don’t have limitations. I still write things on this blog, for example, that I wouldn’t say publicly. There’s definitely something to be said for having a pseudonym. Still, to be able to speak publicly and not question myself constantly is HUGE!

It also means more people in my life know about my health issues. I’m more open about it on Facebook because, after all, they see me promoting my book. There’s no question about it at all anymore.

Coming out about orientation, health, or anything else is a personal choice. This isn’t something I would have done even just a few years ago. I am so glad I have. For me, right now, this was definitely the right move. If it’s not right for you, though, that’s cool, too. You have to do what works for you.

Have you been public about your health stuff? How has that gone for you? I’d love to hear about it in the comments!

*It’s frustrating that I can’t tell you what the book is. I want to so badly, but that would defeat the purpose of having a pseudonym here.


Pups, trees, and better health

December 27, 2016

img_20161223_091955I grew up in a suburb, then went to college in a quiet rural area. But my university had around 17,000 undergraduate students, plus graduate students, faculty, and staff. It was a city unto itself. After college I moved to a city, then a different city for graduate school, then several more moves within cities. Which is why it feels so odd to be living in the suburbs again.

Five short days ago I moved to a suburb that’s a lot quieter and smaller than the one I grew up in. This will be a huge adjustment, but overall I think it will be good. Since this blog is about living with a chronic illness, here are a few ways I think it will be good for my health:

  • This complex allows dogs and there are dogs everywhere. I’ve pet many in just these few short days, including my neighbor’s new puppy! Petting dogs always makes me feel better, no matter what. And soon I’ll have one of my own!
  • Check out the view from my desk at the top of this post. It’s not as great as my old view, but from my window I can see so many trees! From my apartment I can take a walk along a path through woods, something I used to have to drive to do. This will do wonders for my emotional health.
  • It’s so quiet here. I’ve been sleeping better than I thought was possible. When I’m awake, it’s peaceful and relaxing. It’s strange, and a huge adjustment, but I find it calming and lovely.
  • No. More. Stairs. I’m on the first floor and there are no stairs to get into the building. This is amazing!
  • Easy parking. I used to feel stressed out about finding a parking space. Then I would have to carry things from my car, sometimes several blocks, just to get to my building (before dealing with the stairs.) Now the tiny parking lot is by my front door, and I never have to park very far. Bringing in groceries today was so easy.
  • Laundry is now in my unit. The last time I had that was when I lived with my parents. My guess is that laundry won’t be fatiguing anymore.
  • No traffic. I have to do a lot more driving (I can no longer walk to things or take public transportation,) but it’s much less stressful.
  • Less pollution. ‘nuf said.
  • It’s a smaller apartment. There are downsides to that, and I’m not thrilled, but I also know that on the days I’m in too much pain to walk, having a smaller apartment will be super helpful.

In time, I’m sure I will find more ways this move will be beneficial to my health. In the meantime, I’m excited to enjoy these new benefits. Now excuse me while I go unpack some more boxes….


What a difference a year makes

November 25, 2016

Holidays are a good time to reflect. Sometimes it’s because of the holiday itself, but often it’s simply because they stick in our heads. Last year at this time I was…. It’s easy to remember.

Yesterday was Thanksgiving and it made me think about some recent Thanksgivings I’ve had. Some were a real struggle health-wise. Some were tough emotionally. A few were both. And then there was last year.

Last year I was recovering from surgery. I remember being super careful with my poor foot in a cast, making sure no one accidentally tripped over it. And if you’d asked me then where I’d be this year, I’m not quite sure what I’d have said. But I wouldn’t have guessed where I’m actually at.

I’m still recovering from that surgery. I thought I’d be long healed by now, but I still have some pain. I saw the doctor today and it looks like I’m still healing properly, just very slowly. Oh well.

I’m getting ready to move! I thought that by now I’d have received my Section 8 voucher and I’d be moving into a crappy place in a not-so-desirable area. I wasn’t sure when it would happen, but they’d led me to believe it would be soon. Instead, I still haven’t received the voucher (they’re still saying it will be “soon” but I no longer believe them), and I’m moving into a kick-ass apartment! Last Thanksgiving I was still months away from discovering the affordable housing programs that would let me live in a really nice place for less rent than I’m paying now. And when I do finally get that voucher, it should apply to my new apartment – yay!

Tomorrow I’m participating in a craft fair for the first time. Last Thanksgiving I had only recently learned that I could sell my kinds of crafts in the fall and winter. I was so excited! Because summer is no time to sell hats and scarves, and because I feel shitty all summer long, too. But fall and winter are perfect! Plus, I’ll get the Christmas shoppers coming by my booth. Last year I thought about participating, but I felt that I couldn’t manage a really long day (9am-3pm!) at a craft fair. I’m still not so sure that it’s a good idea, but this year I feel well enough to try!

Last year I’d seen some improvement to my health but I had plateaued. Now I still feel like I’ve plateaued, but I’m doing better than I was last year. So even though the changes were small, they definitely happened!

Last Thanksgiving I was just starting to create a business. Now I’m still working on the same business but I have a slightly different business plan. I’ve come farther than I’d have expected with it, even though it’s not bringing in any money yet. But I have confidence that it will!

Over the last year I unexpectedly saw an old friendship end and I surprisingly saw a couple of newer ones blossom.

Last year I was incredibly single. This year I still am. Ok, some things don’t change much.

All of this makes me wonder about next year. What will I be doing by next Thanksgiving? How will I be feeling? I can’t wait to find out!

Do you ever look back on where you were a year ago? How are you feeling about it?


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