The pain of going to the movies

July 23, 2016

I think I went to the movies once last year. Or maybe it was the year before. When people ask, I say that I don’t like going to the movies because of the cost, or because there’s nothing good to see. Those things are true, but they aren’t the real reason. They’re just easier to talk about.

The truth is that even when there’s a movie I really want to see and someone else has offered to pay, I still decline. Because no matter how good the movie is, it won’t be worth the pain of seeing it.

To be fair, I haven’t tried the new reclining seats yet. Maybe those would be better. But regular movie theater seats are very uncomfortable. Plus, there’s the problem that I have to sit in one spot for over 2 hours!

Friends have suggested that I sit on the aisle so I can get up during the movie, but I can’t imagine that going well. The people around me would not be too happy if I was getting up, walking around, and stretching during the movie, and I wouldn’t blame them! I could sit in the back row on the aisle…. but only if the seat wasn’t already taken. I’d have to arrive really early to be sure. That would mean even more time in the theater.

And again, it’s just not worth it. Sure, I could arrive really early and sit in the back row on the aisle, even if the people I was with didn’t want to sit there. I could get up during the show to stretch and walk around. I could leave the theater and walk up and down the hallway. I would miss parts of the movie. I’d be distracted. And in the end, I’d still be in pain. So please remind me, why exactly would I want to do this? What would I gain?

I have missed a lot of “great” movies in recent years. And I don’t regret it at all. When I think about what’s missing in my life, “going to the movies” isn’t anywhere on the list. It doesn’t even come to mind. When I think about the things I’d like to do in the coming months or years, again, “going to the movies” isn’t on the list. There are too many other things I’d rather be doing.

I do watch movies, though. Sometimes I watch them on tv. I have a lot of dvds that I rarely even find time to watch. I can get movies from the library.

The difference is that I can watch them all from the comfort of my own home. I can pause them when I need a break. I can get up and move around as needed. I can sit more comfortably. I can reposition myself as needed. I can stop halfway through and finish the rest the next day. This all makes it totally worth it.

But going to the theater? Not at all.

[Side note: I’m going to the theater tomorrow to see someone I care about perform the lead in a play. I know I’ll be in pain, but I believe it will be worth it. Wish me luck!]

What about you? Are you able to go to the movies? Is there something similar that you skip out on altogether because you feel it isn’t worth it, even though people insist you should try anyway? Please comment and share your experiences!


Cooking without a stove

July 1, 2016

I’m lucky. I have a fairly decent kitchen with a stove and oven that work well. I’m thankful to have them! Still, when the heat and humidity of summer come along, I can’t bear to turn on the oven at all, and I rarely use the stove. But a girl’s gotta eat! What to do?

Whether you’re heat sensitive like me, you don’t have a stove, or you’re just not a cook, I bet you can relate to my dilemma. I can’t eat out much. It’s not good for my health or for my wallet. Ditto for frozen convenience meals. I eat salads and sandwiches, but I get tired of those long before the cooler weather returns. So I’ve gotten used to cooking without the stove.

I was thinking about this last night as I prepare burgers, fries, and steamed veggies. It wasn’t too hot, so I could stand to be in the kitchen (which doesn’t have air conditioning,) but it was warm enough that I wasn’t about to turn on the stove. So instead, I cut up some potatoes and put them on the toaster oven pan with salt, pepper, and olive oil. Then I put them in the toaster oven set to bake at 475 degrees. Voila: Roasted potatoes!

The vegetables were easy. I put some frozen green beans into a bowl, covered it, and microwaved it for 2 minutes.

The burgers were easy because I had a Griddler. This was a very nice gift last year. A George IMG_20160701_102445.jpgForeman Grill would do the same job, I assume. It emits some heat, but not as much as a stove and a hell of a lot less than an oven. I put some garlic, scallions, salt, and pepper into a bowl and mixed it up, then added the beef. I made 4 patties, put them on the Griddler, set the timer on my phone, and sat on the couch to rest.

Dinner was delicious, healthy, and didn’t heat up the apartment!

A friend gave me the idea of making rice and black beans, then throwing avocado and salsa on top. Yum! Since I don’t have a rice cooker, I do have to use the stove for that. The good part is that I don’t have to be in the kitchen! I try to make rice on a cooler day, and I leave the kitchen while it’s cooking. It’s not perfect, but it mostly works.

And then there’s my favorite: the crockpot, also called a slow cooker. This was an excellent housewarming gift a few years back. A friend introduced me to a series of crockpot cookbooks, and I found the author’s website. It’s filled with delicious recipes that can all be made gluten free!

I’m a huge fan of my crockpot. You throw in the ingredients, set the timer, and walk away. IMG_20160701_102502.jpgWhen you come back 3-10 hours later (depending on the recipe) your food is all done! There’s something so great about tossing in ingredients, going out for the day, and coming home to an apartment that smells amazing. Again, it emits some heat, but not much. And I don’t have to be in the kitchen while it’s on.

Unfortunately, I do have to be in the kitchen without air conditioning while I do dishes, but at least the stove and oven haven’t heated up the space!

This isn’t perfect, but it gets me through the summer. If you struggle to cook without a stove and you have relatives who sometimes ask you want you want for your birthday or for Christmas (or who might be open to some hints) maybe a kitchen gadget is the way to go.

What about you? Do you have favorite meals that you can make without turning on the stove? Please post them in the comments – I can use all the ideas I can get!


Having a chronic illness isn’t brave

June 3, 2016

I have seen many brave things, either personally or on the news. I’ve even done a few myself. Having a chronic illness is not one of them!

I hear it all the time, and I’m guessing you do, too. It’s some version of “You’re so brave to deal with all of that!” or “She’s so brave to be in that wheelchair.” Oh really?!?

The last time I checked, bravery had to do with making a choice. You make a choice to put someone else’s safety above your own. You make a choice to do something scary. That’s brave. Depending on the situation, it might even be admirable.

But I didn’t make a choice to have chronic illnesses. Most people don’t. They don’t make a choice to use a wheelchair or walk with a limp or lose their vision. These are the realities of our lives and we deal with them the best we can, but we don’t chose them.

The argument then is that I’m brave for the way I handle it all. Again, I must ask: oh really?!?

What are my options? Yes, there are other ways I could handle this. And let me tell you, it wouldn’t make a difference. I’ve been called brave for putting on a smile and pretending I’m fine. I’ve been called brave for crumbling and saying that I feel like I can barely manage it. I’ve been called brave when I look completely healthy. I’ve been called brave when I’m in a wheelchair and the pain shows clearly on my face. It doesn’t matter how I handle my illnesses and their symptoms, at some point someone uses the B word.

You might wonder why I care. And the truth is that mostly I don’t. Most days I don’t even think about it. But in the moment when someone calls me brave, I bristle. When I see someone else called brave for simply being, I bristle. It bothers me because I don’t want to be put on a pedestal. I don’t want to be thought of as special or different. I want to be seen and recognized for who I really am and for what I really deal with.

This shit is hard! And I’m not special. I have to deal with it the same way anyone else would. Saying I’m brave implies that I have some special skills or personality trait that makes it easier for me to handle everything. “What a difficult thing to deal with, but she’s so brave, look how well she’s handling it!” No, I am not handling it in any special way because I’m brave. I’m handling it the best I can because that’s all any of us can do. Because that’s what I’m sure you, dear speaker, would do if you were also in my situation.

I look around the room at my many friends with chronic illness. Some have had dozens of surgeries. Are they brave because they had dozens of surgeries they never wanted? Some have kids. Are they brave because they had kids? Some weren’t able to have kids. Are they brave because they weren’t able to have kids? Some have jobs. Are they brave because they have jobs? Some can’t work. Are they brave because they can’t work?

Or are they all just doing the best they can?

Because really, what’s the alternative?

But the worst part of all is that sometimes, in a small part of me I don’t like to admit to, I feel proud when someone calls me brave. Because in that one small way, it’s a tiny bit of recognition of just how hard I work to get through each day. And maybe that means I’m a bit brave after all?

How do you feel when someone calls you or someone else with chronic illness “brave”? Do you like it? Does it bother you? Please comment below!


When will I see you again?

May 26, 2016

Every time someone moves away I wonder if I’ll ever see them again. It didn’t used to be that way.

I used to travel a lot. If I was home for a month, I got antsy. If I was home for 2 months I

Maine

That place in Maine

intentionally made plans to get away. Sometimes getting away was a short overnight somewhere nearby and sometimes it was a bigger trip. Twice each year I visited my grandparents in New York. Twice each year I visited my other grandparents in Florida. Once each year I took a week-long vacation for myself. I visited friends. I spent many lovely summer and autumn weekends in Maine every year. And to me, that was normal.

Sure, it was tiring. But it was manageable. I could always rest the next weekend, right? And money wasn’t an issue. I was working then, and most of my trips were really cheap. My grandparents paid for my flights to Florida. I stayed with family and friends almost everyplace I went. I probably spent $500-$1000 on travel each year and loved it all.

020BedouinCamp1

Yeah, I rode one of those

But that was then. This is now.

Now I can’t imagine getting on a plane. I used to fly 3-5 times per year (including business trips) and now I haven’t been on a plane in over 5 years, since January 2011. No matter how I think about it, the idea of flying seems impossible. Maybe, maybe I could manage it if I flew business class. But there’s the money issue, too. I’m not working. $500 is just too much to spend on a plane ticket for a coach seat, never mind the added expense of a business class ticket.

Local trips are also hard. I still visit friends sometimes, but only the closer ones. Even visiting my friends and family in NY feels too difficult. I can’t drive that far anymore (only 4 hours from here.) I want to take the train, but it’s not cheap. And what would I do when I got there? The subway stations all have way too many stairs. It’s a walking city. How could I manage it? Not to mention, if I took the train I wouldn’t be able to bring a lot of food with

Grand Cayman Underwater 24

Me petting a stingray – they’re softer than you’d think!

me, and that makes me nervous. I’d have to cook in a non-gluten-free kitchen! And with all of the travel, I don’t think I’d have the energy to do much once I got there. It would even be hard to get between friends in Brooklyn and friends in Manhattan. If I’d feel so miserable and could do so little, what’s the point in going? And that’s just a short trip to NY. That’s why I haven’t been down there in 2 years, even though one of my closest friends lives there. It’s why I didn’t visit my grandfather in the last year of his life. Thankfully, we had many fantastic visits in all the years before that. (My other grandparents are no longer alive, either.)

I used to love those trips to Maine. My guess is that I could still manage those. It’s a shorter drive and I could bring food in the car. But the house I stayed at was sold and I don’t have free accommodations anymore.

I do still visit friends who are fairly close, but not as often as I’d like. And that’s it. Mostly, I stay in town. I don’t get antsy. I’m too fatigued and full of pain to be antsy about it. Still…. I miss travel. I miss exploring. I miss the new sights. I miss the new cultures. I miss the adventure.

And mostly, I miss my friends.

It hit me again today. A friend, who also has chronic illness, is moving back to her hometown in England. Will I ever see her again? She said I should come visit her and have a nice long stay. I’ve never been to northern England and would love to see it. But could I manage the flight? I don’t know that I could. It’s a sweet offer. I’d love to go. But…

Coincidentally, in less than 24 hours a friend will be here. I haven’t seen him in years. We used to visit each other every couple of years, with me going to him more often because I used to live in that city and I still have many friends there. In fact, that last flight I took in January 2011 was to visit him and those other friends. I miss them all. Lucky for me, he’s coming to visit. But the others, for various reasons, haven’t visited. They keep telling me they’d like me to visit. I try to explain that I can’t, but they just don’t understand. I know they mean well, but their invitations are painful. I want to visit. I’d love to! But I can’t. Not without doing damage to myself.

I’d like to think that I’ll travel again some day. It might not be the same kind of travel that I used to do, but just quiet trips to visit friends would be lovely. I know that other people with chronic illness can do it. Then again, other people with chronic illness can work. They can climb mountains. They can eat whatever they want. We’re all different, and that’s the point. I can do things that others can’t and others can do things that I can’t.

I just wish I could visit my friends.

What about you? Do you travel? How do you manage it? What kinds of accommodations do you use to help with your symptoms? If you have fatigue also, I’d especially love to know how you handle that!


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