The strangeness of “I could never do that”

April 13, 2016

Me: I don’t eat gluten.
Them: I could never give up gluten.IMG_20160413_173002

Me: I can’t jog or do any exercise.
Them: I could never stop exercising.

I hear this response over and over. The “I could never….” response. And over and over I have the same response: you really don’t get it.

Let’s take gluten as an example. When I say I can’t eat gluten, even though the other person knows it’s for health reasons, they’ll say, “I could never give that up.” What do they mean? It’s not as if I gave up gluten on a whim. No one offered me a cure for Celiac and I said, “Thanks, but no thanks.” I wasn’t asked, would you like to give up gluten just for the hell of it?” No, this is necessary for me to live.

So when someone says, “I could never give them up,” what I hear is, “I would rather die.” Because that’s the other option. Give up gluten or die. No, death wouldn’t come immediately, but it would come eventually. And in the meantime there would be a lot of horrible nausea, pain, and other symptoms.

When someone says, “I could never do that” they probably mean that they’re impressed that I can do it. As if I have a choice. They probably mean it in a nice way. But it doesn’t feel that way. Because the other thing I hear is, “I love this thing so much, I can’t imagine living without it, but you can’t have it.” Again, I know they don’t mean it that way, but that’s how I hear it. They get it and I don’t.

Exercise is the same thing. When someone says, “I could never give up skiing/jogging/dancing/kickboxing/some-other-form-of-physical-exertion” what I hear is, “I would rather die” or “I love this thing so much that my life wouldn’t be complete without it, so your life must really be lacking.” I’m sure they don’t mean to convey that message, even though I do get the feeling they’re privately thinking it. Because what else could they mean? When I say, I can’t do that, and I really can’t, even though I want to, but my body won’t let me, then they know I have no choice. Responding that they could never give it up just shows me how important it is to them.

What if I was in a wheelchair? Some days I have been. More days I will be. So far, no one has said, “I can’t imagine not being able to walk.” But I’m pretty sure they will. Because to them, life can’t be complete without the ability to walk. Yet I’m also pretty sure that if I told them they had to choose between using a wheelchair and death, they’d choose the wheelchair.

I keep offering death as the alternative because as far as I can tell, there is no other. It’s not like I can find some other alternative through “trying harder” or some miracle cure that I’ve simply chosen to not take. This is my reality.

Every time we’d talk about my grandmother’s advancing age, she’d always say, “It sure beats the alternative!” Then she’d blow out the candles on her birthday cake. She said that every year until she passed away at the age of 94.

So from now on, when someone says, “I could never….” to something that I have no choice about, I’m going to say, “It sure beats the alternative!” and then give them a moment to figure out what I mean. I think that might shut them up.

Because even if they don’t mean it to, it hurts.

What has your experience been with “I could never….”? Do people say it to you? How does it make you feel? How do you respond? Please comment below.


Package excitement: oh how things have changed

March 30, 2016

There was a time when getting a package in the mail was an exciting thing. It still is. But in2016-03-30 12.35.09 a very different way.

As a kid, a package was a birthday gift from a far away relative. In college it was brownies and cookies from my aunt. As Amazon and other online retailers came on the scene not long after I left college, a package meant a book, an electronic gadget, or some other purchase I made for myself. I’m a bit embarrassed by how I wasted my money, but some of these purchases were really useful. Regardless, when I saw a box with my name on it, it was exciting!

I was thinking about this earlier this week when I opened a box and felt a different kind of excitement. It’s here! Finally! This box didn’t contain a book, an electronic gizmo, or new shoes. It wasn’t fun or exotic. It was….

New medical supplies!

An ASV is like a CPAP machine – it helps me breath while I sleep. )It’s used for an unusual form of sleep apnea called central complex sleep apnea.) Every few months insurance will cover a new set of supplies – a new tube and new mask. Right before I become eligible for replacements, I can feel the current ones losing effectiveness. So I was super excited for my new supplies. It meant breathing at night would be even better, and when I breath better at night, everything in my body feels better the next day!

Part of this change, of course, has to do with money, or lack thereof. I’m simply not buying stuff online as much. Part of it is age. Relatives don’t send gifts anymore. If they want to give a gift, they give a check. Don’t get me wrong, I love and appreciate checks. But they aren’t fun like gifts are. They aren’t surprising. (Then again, I also don’t get stuck with things I don’t like.) But part of it is my health. My healthy friends don’t get medical supplies in the mail. And most people who get medical supplies probably aren’t excited by them. But I’m excited by anything that makes me feel better.

And if that small improvement in health comes in a box in the mail, then you can be damn sure I’m going to be super excited!

What about you? Can you relate? How do you feel about getting new medical supplies? Please share in the comments!


There’s no such thing as a chronic illness schedule

March 21, 2016

I used to work in an office. Back then, my chronic illnesses were more manageable.

Then I worked in an office 4 days a week and from home the 5th day. That helped. But eventually, that wasn’t enough.

Now I don’t have a job at all. Still, I’ve been making some money here and there when I can. Consulting work has gone ok, but I’d like to do something different. The problem with consulting is that I have to be ready to work at a particular time and place. Sure, I can often schedule the at-home part of the work whenever I want, but I have to meet with clients too. That part is really tough with a chronic illness. And that means I can’t take on as many clients as I need to.

I like the idea of “passive income.” With this method, I do the work up front and the money comes in later, without me having to be present at a particular time and place. For example, imagine I wrote a book. I’d put in a lot of effort up front on my own schedule to write it and market it, then when it came out I’d do some more marketing, but it would be less work at that point. The money would come in, but I’d have already done more of the work from the comfort of my living at my own pace. Sounds good, right?

The thing is, the work still has to be done. And I’m having trouble making that happen consistently.

I’ve found some other people who are trying to do similar things. One is married, has a young baby, and works a full time job, yet she works on her business more consistently than I work on mine. Then again, she doesn’t have a chronic illness. That doesn’t mean her life is easier or that she has more hours in the day. I’m constantly amazed by how productive she is. But it does mean that her schedule is fairly predictable. She works on the bus to and from her job each day. She works at night after the baby is in bed. She carves out time every weekend.

By comparison, I can’t even get a morning routine going. Some mornings I wake up and can do work within an hour or two. Other days I’m not able to do any work at all, and I go to bed without having even tried. Some days I get a lot done, but it has nothing to do with the new business. Today I wrote a blog post for that business and did a bit of reading. That’s not too bad. I also filed away some personal papers, sold something on Craigslist, did a ton of texting with various people, fixed something small on my mother’s computer, cleaned out my email inbox, made some phone calls, prepared an easy dinner and did the dishes, and took a shower. For someone else, that wouldn’t sound like much. Except for dinner, they’d do all of that before they left for work in the morning and on their lunch break. But for me, that was a lot. I had a busy weekend and I didn’t feel great. I never went outside. I wanted to bake, but never got to it. In fact, there’s a lot I wanted to do that I never got to. But I feel good about having done all of that. For me, that’s really big!

And that’s the problem. The every day things in life still have to be done, and I never know which days I’ll barely be able to get those things done and which days I’ll have the energy for a little extra. That means I can’t set a schedule.

I would love to say that I’ll get up at 8am every day, eat breakfast and work until 11am, exercise (ha!) and eat lunch, do personal stuff until 3pm, then have the rest of the day free. Or maybe do more work in the afternoon. But I can’t do anything like that. Every day is so different. Today I’m in too much pain to walk down a flight of stairs. Another day stairs are no big deal. Some days I can’t doing any writing because my brain just won’t function well enough. Other days I zip off a blog post in 1/2 hour. There’s no way to plan it. It just is.

It’s hard to explain all of this to the other entrepreneurs I talk to. They can’t understand why, without a job, I can’t put in more time on my business. And I get frustrated that even on my best days I can’t put in as much time as they do on their worst. I’m trying, but it’s just not working.

I know I need a schedule of some sort. That’s how I work best. This fit-the-work-in-when-I-can method means that other things get in the way and I end up answering emails and scanning Facebook instead of working. I need a better method.

If only I knew what that was.

Edit [3/23/16]: I just came across this post today (good timing!) and want to share it. If you’re looking for a way to earn some money yourself, maybe it will give you some useful ideas.


How dare they!

March 8, 2016

Last year I got a surprising letter in the mail: I was coming up on the waiting list for Section 8! Section 8 is a housing program where the tenant pays up to 30% of their income in rent and the government pays the rest. This is huge!

Now, it’s not all great. Section 8 has strict rent limits that are very hard to meet. For example, in my town the rent would need to be no more than $1187 per month, including all utilities. I haven’t heard of a 1-bedroom apartment for so little in many years. Still, I figured it would be worth trying.

The waiting list for Section 8 can be 3-4 years. I’ve only been on the list for 2 years! Wow! So now it’s time to prepare, right? They need a lot of paperwork. Of course. I handed it all over.

Now, if you’ve ever applied for benefits in the U.S., you know how intrusive it can be. They want to know how much your income is. They want to know your spending on every little thing. They want your social security card, driver’s license, bank statements, copies of approval letters for all other benefits (because heaven forbid the agencies actually speak to each other!) and all sorts of other things. But I do it, because that’s how I’m sort of paying the bills right now.

I really hate handing over bank statements. There’s something about that which feels particularly intrusive and unnerving. But I did it. 12 months of bank statements. It took ages to print out all of the statements and white out the account numbers. Still, they showed which bank was mine, how much money I had, what I deposited, what I paid out, my name and address, etc.

And they lost them.

Yesterday I got a letter in the mail saying they needed my bank statements. I contacted the woman in charge of my case and she said she didn’t have them. I had her look again. She still didn’t have them.

What the fuck!?! They lost my bank statements for all of 2015!!

And now they want another copy. I know they want that copy before they’ll give me benefits, but is it worth it? Because honestly, I don’t know that it is. I’m not sure I’ll be able to use Section 8 anyway. And what if they lose them again? I was so unnerved that I didn’t even want to mail those statements, so I hand delivered them to the office. I really couldn’t have done more.

I’m not sure what I’ll do, but I know I’m pissed. And I’m going to let them know that. Because this is COMPLETELY UNACCEPTABLE!