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.

7 Comments | Expectations, Fatigue, Frustration, Isolation, Limitations, Raves, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

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’ve begun 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.

3 Comments | Educating, Raves | Tagged: | Permalink
Posted by chronicrants

Working on my health one literal step at a time

November 26, 2014

I’m listening to the rain/sleet/whatever-the-hell-that-is hitting my windows. It’s been a quiet day. Even from my apartment, I feel how empty the city is becoming. The streets have been quiet, no new email is coming in, and few people are commenting on Facebook. Tomorrow is Thanksgiving, and everyone is busy traveling or cooking, finishing work or packing a suitcase. Well, almost everyone.

Two weeks ago I decided to walk every day. I had taken 2 walks every day while I was dog sitting, so 1 daily walk seemed reasonable. My health has been improving, and I know I need to keep pushing myself, within reason. So I set a goal of 1 walk each day, 6 days per week. So far I haven’t quite managed it, but I’ve walked 5 days out of each week, so I figure that’s a good start. I’ll have to try harder to get it up to 6.

On this quiet, rainy, sleeting, slushy day, I didn’t have anyplace to be. No medical appointments or plans with friends. I’d pushed myself to run errands yesterday so that I could avoid today’s traffic, crowds, and lousy weather. I’d succeeded, but I knew I should still walk. I needed to take that walk. I did need to go to the post office. I could wait until Friday, but why wait?

I haven’t been counting my regular walking towards my goal. I want these walks to be in addition to what I usually do. They don’t have to be long, but they should be at least 2 blocks each way if I can manage it. So the trip to the post office doesn’t really count. It’s a walk I would take anyway, and it’s very short – just a block away. But something is better than nothing.
As I walked to the post office I decided it should count. Not because of the sleet bouncing off my umbrella. Not because of the cold whipping my face. But because of the slush under my feet. I walked slowly and deliberately. I focused on my gait, my posture, my limbs and joints. I was as careful as I could be. I knew that slipping and falling could be no big deal, or it could be disastrous. The walk was probably 12 or 15 minutes round trip because I was walking so slowly, so carefully. I held my breath, then had to remember to breath. I felt my ankle turn on some uneven sidewalk that wasn’t visible beneath the snow, and I was thankfully I didn’t injure myself. I felt my foot slip slightly, but I regained my balance.
With every step, I was nervous. But I was also proud of myself. The easy thing would have been to stay home. That also would have been the isolating thing. I needed to be out. I needed fresh air. I needed to see other people. I needed to feel that I wasn’t trapped. And I needed to know that I could keep up with my exercise if I tried hard enough.
There will be enough days that I won’t be able to take my walks. I will be in too much pain, have too much fatigue, or have some other ailment. I will have to choose between taking a walk and buying groceries, which is what happened yesterday. I will have to skip most of the summer, due to my heat sensitivity. So I’m very glad that today, at least, I took that walk. It wasn’t easy, and it wasn’t perfect, but I did it.

4 Comments | Decisions, Isolation, Limitations, Milestones, Raves | Tagged: , | Permalink
Posted by chronicrants

This never happened: When healthcare is about health

November 24, 2014

We (society) throw around the term “healthcare” a lot in political debates, media, and daily life. We use it to mean all care related to our health, but that’s not what “healthcare” really is.

Occasionally, though, someone flouts convention and choose to focus on actual health. I forget how rare this is until I 11-24-2014 10-18-13 PMregister my own surprise when it happens. Today was one of those days.

I’ve been having trouble adjusting to my new CPAP setup. The doctor suggested I get fitted for a different type of mask. The CPAP company has a guy, C, who handles this. I met with him for my original mask fitting. He came to my house to set up the CPAP the first time around. He came out to fix the CPAP when I had problems. He came back with the new setup last month. And today I saw him for another mask fitting. We greeted each other like old friends.

C showed me my two options and explained how they worked. He took his time, as if he had no other appointments. He answered every question. He never rushed me or made me feel bad for asking so many questions. Isn’t that how it should always be. But it isn’t.

I chose a new mask, excited, as always, at the prospect of improved sleep. C rummaged through a drawer, searching for the right type and size, and pulled out a new mask. He ripped open the bag, and I commented on how I didn’t expect to walk out with a new mask. He said, “This never happened,” and I grinned and agreed. It wasn’t the first time someone in the medical field had said that to me when giving me proper healthcare, and I doubt it will be the last.

The insurance coverage of a CPAP is incredibly complicated, but at best they replace the mask and tubing once every three months. The filter only gets replaced every 6 months, I think, and the machine should last for several years. I figured I was 6 weeks away from qualifying from a new mask. I asked C about that, and he explained that this never happened, and that he’d submit the paperwork next month, when the insurance would cover it. I suppose I’ll have to make this mask last longer than it should so that my supply schedule will line up with the insurance paperwork. But for now, I’m just so excited to try out the new mask tonight!

C knows his job. He knows what boundaries he can push. That’s clear. But he also clearly wants to help patients. He didn’t have to give me that mask. He gets nothing in return, except the knowledge that he’s helping me. So why did he do it?

No, that’s the wrong question. The question is, why doesn’t everyone else do it?

Nope, wrong again. The real question is, why is it necessary to do it? Why must someone break the rules to provide good healthcare? Why doesn’t our system focus on health as a top priority?

If our system focused on health, a new CPAP mask for me would be covered. So would many other things. I began to list them here, but why bother? We know what they are. I’ve discussed them so many times before. And they aren’t the point, at least not individually. It isn’t simply about what’s paid for, but an attitude. I would like medical appointments that aren’t rushed, doctors who don’t have to worry about malpractice suits at every turn, and practitioners to consult with their colleagues on every case to be sure that nothing is missed. I want to see a system where the goal of every examination, test, treatment, and discussion is optimizing the patient’s health.

Because what’s healthcare, if it’s not about optimizing health?

2 Comments | Expectations, Healthcare, Kindness, Medication, Raves | Tagged: , , | Permalink
Posted by chronicrants

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