The guilt of not working on the “good” days

June 26, 2016

“Would get a job if you were feeling better?”

It wasn’t a doctor or a judge or a parent asking me this, but a friend who has chronic illness herself. I suspected her motives, but before I asked her about them, I answered her first. It’s not an easy question to answer, only because there are so many answers!

  • If I was feeling slightly better from time to time, I wouldn’t get a job.
  • If I was feeling a lot better from time to time, I wouldn’t get a job.
  • If I was feeling a lot better every day and thought it would last, I would consider working, but I’d try working for myself first. If that failed after 6 months or a year, then I’d give in and get a job.
  • But if I was feeling a lot better every day and didn’t think it would last, I wouldn’t get a job.

And those are just a few possibilities. And they don’t take the loss of my social security and other benefits into account because my friend asked me to discount them. When I felt a lot better recently I was already working on a project to earn money from home. And sure, I started thinking that I could put more time into it and stand a better chance of succeeding. But then in the blink of an eye I returned to how I’d been feeling before. But even when I was feeling better I wouldn’t have considered getting a job, not only because I don’t want to work for someone else if I can help it, but because how I felt was still unpredictable. Better to work on my own schedule from home and not worry about someone else’s timeframe or spending energy on commuting.

But that’s me, and everyone is different. My friend had been doing much better lately, so she felt like she *should* work. She didn’t want to, but she was supposed to. Her husband came home tired from work every day, while she got to be at home. On the days she felt horrible she felt bad about this, but knew it was necessary. But now she was having more good days and felt she should do more. But her good days were unpredictable, so how could she do it?

Of course, she’s not the first one to raise this subject with me. Many of my married friends say they feel guilty that their spouse is solely responsible for supporting the family financially. Sure, some couples choose to have one person work while the other does not, but that’s a mutual decision. When chronic illness and disability are involved, it feels like there’s no choice.

One financial downside to being single is that there’s no one around to bring in any money. On the other hand, I’m only responsible for myself and my own feelings, and that’s freeing. I still feel sometimes like I *should* work, but only in a general way, only because that’s the pressure that I feel from society overall, and not from anyone in particular. Not that my friend feels pressure from her husband. But she’s aware of his extra responsibility. No one is responsible for me but me. It’s not easier, just different.

For my friend, I suggested that she volunteer one or two days a week to test the waters. She said she’d been thinking the same thing. I hope it works well for her. I really do.

As for me, I hope to never have another job, but I sure would love to earn a living with my own business! I’m working on it slowly, putting in a few hours here and there when I can. It’s going slowly. It may never work. But I’m trying. So maybe that’s my answer to the question? I’ll just keep trying to earn what I can when I can, but in a way that doesn’t set back my health. And of course, that’s the hardest part of all.


Stretching boundaries, hitting walls

June 21, 2016

Eeek! It’s been almost 2 weeks since I’ve written and I miss it so much! The funny thing is, for the past few days I’ve been at a loss as to what to write, but today I find myself with too 2016-06-12 10.08.47many posts on my mind. The rest will have to wait for another day, because today I want to talk a bit about why I was gone for so long.

I love Massachusetts. It’s a fantastic place to live. But sometimes I just want to get away. I used to travel a lot. Ok, not as much as some people, but it was rare that I was in the state for more than a month or two at a time. Then I got sick. So yeah, that changed things more than a little.

Last month I wrote about my frustrations with not being able to travel. Lucky for me, the states here in New England are small, so I can travel between them somewhat easily. And that’s how I was able to go to Maine this month!

I’ll skip the details, because you’d probably find them boring anyway. The gist is that I stayed in a rented house on the shore with a bunch of family, including my parents, extended family, and 2 awesome dogs.

So I’m sure you’re wondering, how’d it go? Well, it was mixed.

I felt great when I arrived! The drive was under two hours, then there was a lovely boat 2016-06-14 17.25.17ride. I was greeted by family and we all had a nice time and a fun dinner. It was later that I felt horrible. Really horrible. Please-make-it-all-go-away kind of horrible. I’ve felt worse, of course, but this was still lousy.

Somehow, I finally managed to sleep. I slept terribly that night, but I did sleep just enough. I woke up at 5:30am. To me, that’s not morning. Anything before 6am is still night. But I was wide awake, the sun was streaming into my room, and I should hear the roar of the ocean outside my window. It could have been a lot worse.

I spent 4 days in Maine. That first night was rough. There was also a lot of pain. There were a lot of stairs just to get into the house. And I didn’t figure out until 2 days before the trip 2016-06-12 15.15.17that the reason my feet had been hurting was that I needed new sneakers. And there was some family-related stress.

But there were also bright skies and blue ocean. Even the drizzle was lovely. There were jokes and laughter. There was puppy cuddling. There were board games and walks. Sometimes I wanted to go on a walk with folks but I couldn’t. Other times, I could, but they had to slow down for me, or cut the walk short. Once I turned back early. Sometimes I went on drives. And it was all ok.

It was frustrating that I couldn’t do everything I wanted to do. Everything they did. Everything I used to do in the same coastal town when I visited just a few years ago.

On the other hand, check out these photos. I can think of worse ways to spend 4 days!

I was exhausted when I got home. I spent the night resting, watching tv, and checking in with friends. I had to rest the whole next day, too. The following day I felt barely well enough to go out for groceries, then I collapsed on the couch when I got home. Still, the 2016-06-12 19.25.54recovery wasn’t too bad.

I pushed myself. But I pushed myself carefully. I felt crappy some of the time but good most of the time and even great for a tiny bit. It will never be perfect, and right now that’s ok. I’m just thankful that I got to go at all. And I got to sit by the ocean.


Because I have chronic illnesses too

June 9, 2016

I have a problem setting boundaries. I know this, and I’m working on it, but it’s still a problem. The thing is, I like helping people, and that sometimes gets in the way.

Part of it is altruistic – I like seeing others benefit. Part of it is selfish: when I feel like there’s so much I can’t do in my life, it feels so good to do something that others find useful. But whatever the motivation, I have limitations, just like anyone else. I have limitations of time, ability, and energy. But on top of those, I also have limitations because of my health.

Lately this has come up a few times, and I’m handling it poorly. I know I could do better, but I’m not sure how.

We all have differently limitations and abilities, and that includes those of us in the chronic illness community. One person has more energy, another can climb stairs, another can walk more, another has greater cognitive function. It’s easy to forget that those abilities don’t preclude other limitations. I’ve been guilty of it myself. I see someone who walks a lot, and I forget that while they don’t have fatigue, they do have pain, for example. And now I’m on the receiving end of that.

I’ve been volunteering to help people in my chronic pain support group with a few things. I want to help, but I also have to be careful of my own limitations. I try hard not to commit to doing more than I can reasonably handle. The problem is, sometimes people ask for more. And that’s where the boundary issues come in.

Several times lately, people have assumed that I would do more than I had offered to do. I think they see me having certain abilities, and they forget about my limitations. Then when I say no, they ask why.

I offered to teach an informal class on using Facebook. There are so many great Facebook groups for people with all sorts of chronic illnesses, and I’d even set up a Facebook group for our support group. I knew a lot of people struggled with it, so offering a lesson seemed like a good idea. The problem was that several people said, “I can’t make it to that lesson, so when else can we meet?” I was stunned! I couldn’t give private lessons to everyone! Just that one class was exhausting. I didn’t leave the house for two days after that. But no one saw that part.

Finally I sent around an email saying that I’d be happy to give private lessons on a schedule that worked for me if people wanted to pay me. That ended most of the discussion, though one person still said she couldn’t afford to pay me but still wanted to meet because she needed help. I get that. I often need help that I can’t afford to pay for. So I don’t do it. I simply can’t help so many people. It’s not within my abilities.

I’ve been doing a lot of other tech support for the group. One person asked me to do some things and I finally said no, but that I’d be happy to show her how to do it. She asked why I couldn’t do it. I finally was direct: “Because I also have chronic illnesses and I don’t have the energy for it.” She said she’d find someone else to help.

I wasn’t trying to be rude or difficult or uncooperative. But I think people forget that doing seemingly easy things, like typing into a computer, can be downright exhausting for some of us. It can be painful for others. For some, it’s both. And just because I can do 10 things, doesn’t mean I can handle 11. Just because I can leave the house for 1 lesson doesn’t mean I can handle 5.

Many of my friends with chronic pain and chronic illness have visible illnesses. Mine isn’t visible unless you really look. You might notice a wince, a limp, or a stumble, but most of the time, I look just fine. So in some ways I understand why people forget and expect more of me.

Then again, when it’s someone with a chronic illness who asks me why I won’t do something extra, I just want to shout: BECAUSE I HAVE CHRONIC ILLNESSES TOO! JUST LIKE YOU!

Do you encounter this? How do you handle it? Please comment and let me know your experience!


It’s about more than just pee

June 5, 2016

There’s political turmoil in the U.S. right now around bathroom use. Yes, you read that right. Transgender folks want to use the bathroom that corresponds with their gender identity and conservatives want them to use the bathroom that corresponds with the gender on their birth certificate. While I have some very definite opinions on this issue, there’s one aspect that strikes me as being more relevant for those who have certain chronic illnesses and other medical issues. Or who just poop when they’re not at home.

You see, the argument from transgender folks and their allies is that this is about a simple right: the right to pee. And it is. But it’s also more than that.

I see a lot of these memes, videos, and arguments. I share a lot of them on social media, too. After all, I fully support everyone’s right to pee in a comfortable, safe space. But the thing is, isn’t it about more than just pee? And I’m not just talking about having a private place to pick a wedgie, fix your hair and makeup, or take off those uncomfortable stockings.

For me, public bathrooms, and even private ones, were about more than just peeing. I had around 20 years of undiagnosed Celiac Disease and other food intolerances, so you can imagine what bathroom use was like for me.

I have an unusually strong bladder. I can often go for 4, 6, even 8 hours without peeing. But when I got *that* feeling, there was no choice.

There was the time I was on the highway, stuck in traffic. I got *that* feeling. I knew it was bad. I looked at the stop-and-go traffic and I wondered if I would have to have diarrhea in the grass on the side of the highway. Thankfully, just in time, I got off the road, into a motel parking lot, and found my way to a bathroom. Thank goodness!

Then there was the time I was seeing a show on Broadway for the first time. I was so excited! Walking to the theater, I got *that* feeling. We rushed to the theater, thinking I could quickly use the bathroom, but the doors weren’t opened yet and there was a line to get in. I rushed to the hotel next door, but a guest card was needed to use the bathrooms. I asked at the desk, but they wouldn’t let me use a toilet. I went back to the theater. The doors were open and my mother was almost to the front of the line. I was desperate. As soon as I was through the door I ran to the bathroom. The line for the ladies room snaked down the hall. I ran to the front and asked if I could cut the line. A woman in front said yes immediately, and others followed her lead. I hate to think what would have happened if she’d said no. Maybe she saw the desperation on my face. Maybe she noticed that I was turning a bit white, or even green. Maybe she was just a compassionate person who always helped others. Whatever it was, I was grateful. I ran into the next open stall, and sat down as I felt what seemed like everything I’d eaten in a week leave my body. I was there for a long time. I eventually made it up to my seat, and was still feeling a bit ill. Before the show started, I got the feeling again. I ran back to the bathroom. It was close to curtain, so there was no line. I sat there alone, in the quiet, grateful for the toilet. I got back upstairs just as the opening number began, thankfully feeling much better.

I’ve had more incidents like this than I can count. There have been times I didn’t make it to a toilet in time. Thankfully, those were not in public places. But they could have easily been.

The point is, sometimes it’s about more than just peeing. I’m cisgender, so obviously this particular issue of which bathroom to use doesn’t affect me directly. (It does affect several friends, many acquaintances, and countless people I don’t know personally but who should obviously have the same rights as everyone else.) Still, I can’t help feeling a twinge at all of the talk about how “it’s just about peeing.” No it isn’t! It’s also about pooping! Don’t forget the pooping!

I want to shout it at the tv, at my computer screen, and at every person who says, “it’s just about peeing.” I get their angle. They want to eliminate the politically-motivated distractions being used to force the issue. But let’s not erase the very real problems that so many others are dealing with. It’s about pooping too!

There are certain things all humans do. I get that most people don’t want to discuss them all. But really, why can’t we talk about poop? If we can wipe a baby’s butt, clean out the cat’s litter, and pick up the dog’s poop from the street, surely we can recognize that trans+ folks will need to occasionally poop in public too. And when they do, they need to be able to do it in a safe place.

Because if I hadn’t had a safe place in that theater, it could have been a very messy experience. And no one should have to go through that.

So for all of you out there with IBD, IBS, Crohn’s, Celiac, or any other digestive issue, and for those who simply need to poop, I support you. Let’s win this thing! #itsaboutmorethanpee


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!


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