What a difference a year can make

December 30, 2014

As I made plans for New Year’s Eve this week, I suddenly remembered last year. The difference is startling.

Last year, I didn’t want to go out. I had no exciting plans, but even if I’d had them, I probably would have skipped them. I was sad, anxious, and overwhelmed. My grandfather had just passed away. I was still reeling from the passing of my grandmother almost exactly one year earlier. My financial situation was precarious. My hearing for social security benefits was still a few weeks away. My long term disability claim was about to be reviewed and possibly denied. My health was lousy. I was trying so hard to get better and I just couldn’t seem to make the progress that I wanted to make. I had no desire to celebrate the end of such a crappy year, and I wasn’t filled with hope or anticipation for the coming year. I dreaded attending any sort of celebration with happy, optimistic people. So when friends invited me over to hang out, making it clear it would be an early night, that sounded perfect. We talked. We played board games. And when midnight rolled around I was at home in my pajamas, watching the fireworks alone on tv.

By January 2, life had resumed as normal, and I continued plodding along.

This year is difference. I’m not looking forward to some wild, crazy night. But then, even with perfect health I probably still wouldn’t be. I guess that’s what age does to you. I don’t feel the need to celebrate, but I also don’t mind it. Some friends want to get together for a low key evening of talking, drinking, eating, and playing board games (we all love Settlers of Catan) and that sounds just about right to me. We’ll all toast the new year in together, but we won’t stay out too long past midnight. 2 couples have young children who will wake them up early and the other person will get up early for bird watching the next morning. So even if I didn’t need to get to bed at a reasonable time, everyone else will probably be leaving by 1am anyway.

But it’s more than the logistics, of course. This year I saw such improvement. I recently lost another grandparent and that has been difficult, but his final weeks and days were not as horribly painful as the others’. I lost my long term disability insurance coverage but I gained social security. More than that, I no longer have to worry about either one. The lack of worry has had an enormous impact on the improvement of my health. On top of that, I have stable health insurance for the first time in years. With the ability to see doctors and try new treatments, and with the lack of stress, not to mention with another year of the previous treatments under my belt, I’ve seen some huge improvements in the last year. Sure, I still have big health problems, but they’re more manageable and I have more reason to be hopeful.

I still have health-related problems that I’m trying to figure out. I want to see some doctors that don’t take my insurance. Social security disability doesn’t come close to paying all of my bills. I’m still not sure what’s causing some symptoms. I’m still reacting badly to some medications. But overall, I feel better enough that I can be optimistic that I’ll figure out ways to handle all of those issues sooner or later.

It’s not perfect, but it’s better.

One year passes quickly, but it’s really a long time. 365 days. 52 weeks. 8760 hours. It’s going to pass no matter what, so the best we can do is hope that as it does, our lives will be good and our health will improve, or at least not get worse. Then we need to do all we can to make those hopes a reality.

I don’t know how I’ll be feeling 1 year from now. Maybe better. Maybe worse. Maybe the same. But I sure as hell hope I’m doing better. And I hope you are too.

As we welcome 2015 and those 8760 hours begin passing, I will be hoping that you and I all see some good times, some improvement in our health, and some ways to manage the difficulties we face.

Here’s to us.

Choosing to stay home vs. being stuck at home

December 23, 2014

If you’re a spoonie, you probably know what it’s like to be stuck at home. And maybe you sometimes get to choose to stay home. They’re very different.

For most of the last few years, when I was home it was because I was stuck at home. If I felt up to going out, I did because I knew I had to take advantage of the limited opportunity. But lately I’ve been feeling a bit better and I’ve been choosing to stay home. I’d sort of forgotten what it was like. I’d had a lot of time at home before, but this is different, and I’m still learning the ways that it’s different.

When I’m stuck, I want to go out, or to at least have the option to go out. When I can choose, I often don’t want to go out and have to talk myself into taking a walk or running errands, just to get fresh air and exercise.

When I’m stuck, I’m often lonely. When I can choose, I appreciate the quiet solitude of being home alone.

When I’m stuck, I’m sad to miss out on social events. When I can choose, I feel less bad if I miss those events.

When I’m stuck, my apartment feels small and cramped. When I can choose, my home feels warm and cozy.

When I’m stuck, I’m bored and can’t do much beyond watch tv and read a bit. When I can choose, I often feel well enough to work on hobbies, cook, clean up the clutter, and also read and watch tv (not all on the same day, though.)

When I’m stuck, I feel sad. When I can choose, I feel content.

When I’m stuck, I’m very aware of the pain and fatigue. When I can choose, the pain and fatigue are obviously less, and feeling better allows me to mostly ignore the pain and fatigue that remain.

When I’m stuck, I spend a lot of time on social media, trying to connect with the outside world. When I can choose, I spend more time doing things on my own.

When I’m stuck, I think about the things I can’t do. When I can choose, I focus on the things that I can do.

When I’m stuck, I make plans for a future that seems remote and unlikely. When I can choose, I make plans (the same plans, by the way,) for a future that feels foreign but possible.

When I’m stuck, I go out every chance I get. When I can choose, sometimes I go out and sometimes I stay in.

When I’m stuck, having company is thrilling. When I can choose, sometimes company is nice and sometimes I’d rather stay home alone.

When I’m stuck, I am very aware of being stuck. When I can choose, I’m very aware that I have a choice. And I’m so incredibly grateful to have that choice.

How does blocking a handicapped parking space help those selfish people?

December 22, 2014

I’ve written several times about how annoyed I get when someone illegally parks in a handicapped parking space. It’s rude, inconsiderate, selfish, and inexcusable.

So you can imagine how I feel when I try to park in a handicapped space, only to be blocked not by a car, but by a Handicapped Parkingshopping cart. Yeah, I get pretty pissed.

Yesterday I went to a new grocery store. There were two carts in the handicapped space! Luckily they were to the side and I drive a small car, so I was able to fit into the extra-wide space. Still, it was so wrong! And yes, there have been times when I have had to drive past the space, because I don’t have the energy or I am in too much pain to get out of my car, walk over, move the cart, get back in my car, park, then continue with my errands. This time, I was with someone, and we each took one cart on our way into the store.

Then I came back to my car, only to find a new cart that someone had left between my car and the small island of dirt and grass! What the fuck?!?

There is absolutely no excuse for this! If you are able to walk as far as that space and put the cart between my car and the grass, then you could walk a few more feet to the cart return. Yes, there was a cart return, and it was just across from my car. And if there was no return, there would still be no excuse for leaving a shopping cart there. Leave it in a non-handicapped space. Or, you know, do the decent thing and bring it back to the store!

I try to the assume the best in people. I really do. But these are the things that make me cynical. These are the things that make me wonder how someone can be so unbelievably self-centered that they either don’t realize or don’t care that they are making things so much harder for someone who probably already has to exert a whole lot more effort to go to the grocery store.

I complained to a worker and asked him to tell the store manager. He said they were aware of the problem. Obviously, there’s nothing they can do. So I say we do something! When you see someone doing this, let them know how despicable they are being. Let’s shame them mercilessly. And maybe, if they are embarrassed enough, it might occur to them that the best way to avoid being shamed and embarrassed is to, you know, be a decent human being.

Am I Ms. Rants? Is she me?

December 17, 2014

Who would you be if no one knew who you were?

There was never a question what I would name this blog. I knew I wanted a place where I and others could rant about the frustrations we deal with around our chronic health problems. And since I wanted to be anonymous, Ms. Rants seemed like an appropriate name to give myself. I have written almost 500 posts now (incredible!) and today I was thinking about the persona I project via “Ms. Rants” versus who I am in real life. And they’re actually not that different.

I follow a few blogs. In many spheres, bloggers take on larger-than-life personas. Sometimes it’s to get a bigger crowd. Sometimes it’s so they can experiment with being someone else. It’s sort of like putting on a superhero cape just to see what will happen.

For me, this blog was always about discussing the reality of my health situation, so there never seemed to be any point in being anything other than honest and straight-forward. Still, that’s easier said than done. I’ve noticed that hiding behind a fake name has allowed me the comfort of saying things I wouldn’t normally say. The funny thing is, after saying those things here, I’veĀ begunĀ to say them in real life! I still usually limit discussion of bowel movements, pain that makes me scream, and insurance woes to chats with other friends who have chronic illnesses. Still, in that way, I’m becoming more like Ms. Rants, instead of the other way around.

Of course, readers also only see certain parts of my life through this blog. I’m not intentionally lying about who I am, I’m just trying to keep the topics relevant. I don’t talk too much about my other hobbies, how I spend every minute of the day, what books I read, or what music I listen to (currently this, but I listen to most genres.)

The funny thing is, you would think that I exaggerate a lot of my attitude on this blog, but you’d be wrong. After all, here I can hide behind a fake name, but in real life I wouldn’t really criticize doctors, post public requests for help on Facebook, tell off people who park illegally in handicapped parking spaces, tell strangers they’re asking things that are none of their business, tell friends the details of my problems, or generally say half the things I purport to say. But I do. I don’t do those things every time. It depends on my mood and on my energy levels. Sometimes I keep my mouth shut. But most of the time I speak up. That’s just who I am. It’s who I’ve become over the years. And I’m happy with that part of myself. It surprises a lot of acquaintances and new friends, but so far, they seem to appreciate my straight forward approach.

In the blogging world, though, you never know if that kind of attitude is real or not. In my case, it is.

So I’m not entirely Ms. Rants, and she’s not entirely me, but we’re pretty damn close to one another. I type exactly the way I speak. I usually don’t edit my posts, and when I do, it’s usually just to fix typos. No, the truth is, I write what comes to mind. Sometimes that’s good, sometimes it’s not. Just like sometimes the things I say are good, and sometimes I put my foot right into my big fat mouth. But I’m willing to take that chance, because I like who I am and believe in what I say.

So to you other bloggers out there, do you put on an act in your blog, or do you write as yourself? And if you’re not a blogger, how do you think you’d write if you were?

I am so grateful for all of you who read these posts and to those who comment, so I wanted to just take a moment to be honest about all of this.

Next time I’ll go back to my regular, health-focused posts. I’ve got a long list of topics I want to write about, so maybe inspiration will strike and I’ll pick up one of those. Or maybe I’ll come up with something random, like today (this topic came to mind less than an hour ago.) You just never know.

%d bloggers like this: