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.


“Affording” a home

March 15, 2016

I think it’s time to move.

I have been in my current apartment for 10 years. The longest I ever spent in one place before this was a year and a half. I didn’t mean to stay here so long, but inertia set in, and years passed, and here I am.

Every 2-3 years I look for a new apartment. I get discouraged when I can’t find anything nicer than what I’ve got for the same price, even in a less popular neighborhood. And I like my neighbors. So I stay. And then the next year I consider moving again. It’s a tiresome cycle.

But this year may just be the year. I’m tired of this. I want a change. And my recent dog experience made me realize that if I’m going to move, I should do it now, before I get a dog, because it would just be too hard to move with a new pup in my life.

In the past, I always set my housing budget based on my income and the others things I spent money on. When I moved to my current place, it was more expensive than where I was moving from, but I decided it was worth giving up some of the extras in my budget so I could afford it.

Now it’s different. My social security disability and other benefits cover my non-rent expenses and I have a few hundred dollars left over to put towards rent. But a few hundred won’t do it around here. Until now I’ve been taking the rest of the rent from my savings, but that won’t work forever.

I won’t get a roommate. Not only would I hate having a roommate, but I couldn’t share the kitchen with someone unless they also had Celiac Disease. So let’s assume no roommate. What are my options?

I can stay where I am. My guess is that my rent will be going up when I renew my lease (I’ll find out in a few weeks.) Let’s say staying here would be $1600 per month, including heat but no other utilities.

I could move to a nearby town where I’d like to live, and pay around $1500, including heat.

I could move to a town a bit further out and pay $1400, including heat.

I could move an hour away and pay only $1100, but have no friends or social life nearby.

I could put all my savings into buying a condo, with a mortgage lower than my rent. But then, when I add in condo fees, property taxes, and repairs, I’d be paying about the same as I pay in rent, but, I’d have put my savings into the down payment.

I could buy a single family house with a mortgage about the same as my rent. There’d be no condo fees, but I’d still be pulling money out of savings every month unless I could start earning more…. but there’s be less in savings because I’d have used it for the down payment.

I could move farther out and buy a 3-family house, live on the first floor and rent out the other two floors. My savings would go into the down payment, but the rent from those two apartments would cover my mortgage, property taxes, and house repairs.

Obviously the last option makes the most financial sense, but it has some problems. I’d have to move at least 45 minutes away, maybe more. That means I wouldn’t see my friends as much or socialize as much. I know nothing about owning a house. I’ve always rented. And I can’t fix anything, or event attempt to learn, because of my health problems, so I’d have to hire someone to fix every little problem. I’d have to deal with tenants. But on the bright side, if the rent from the tenants covered my costs, I could basically live there for free. Then my social security would cover the rest of my expenses (medical bills, car, etc.) and I wouldn’t have to worry about doing any other work.

I would probably buy a 3-family house if I could do it near where I am now, but it’s simply not feasible here (it would be at least $600k.)

So that brings me back to renting as the simplest, most straightforward option. But I can’t afford to rent indefinitely unless I start earning a living.

Blech. I keep running around in this circle in my mind. I look at apartments and condos and houses online and I run the numbers over and over again. I’ve done the research on how to calculate for vacancies when renting out. I’m good with numbers. But no matter what I do, the numbers just don’t add up.

The answer is obvious, really: move away. But my life is here. My friends, my social life, my chronic pain support group, my doctors….everyone is here. I can’t imagine starting over.

I’m lucky that I have options. I know that. I am incredibly lucky. I’m thankful that I saved up some money back when I was working. I’m lucky that my family has helped me out from time to time. But that luck isn’t enough to support my current lifestyle. So I’m just not sure what to do.

And in case any of you regular readers are wondering about Section 8, I’ve been keeping an eye out for places that would work with that, too, but I’m not seeing anything. And considering how inept they’ve been about processing my paperwork, I’m not exactly holding my breath that it will come through anyway. So, it’s in the back of my mind as a potential option, but I don’t think it will solve this conundrum for me….


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!


Worrying the good stuff will hurt me

February 29, 2016

I’m going to be sharing some big news soon. But not yet. I’m too overwhelmed right now. And too nervous.

Because the thing is, when something good happens and you have a chronic illness, often you can’t just enjoy the thing.

The thing I’ll be sharing soon is good. Really good. Incredibly good. But along with the good comes some difficult stuff. It comes with expending more energy. It comes with less control of when I rest and how long I rest. It comes with more responsibility. And all of that worries me.

On the downside, all these years I haven’t had a spouse or children or anyone to be there for me every single day. My parents are fantastic, and I talk to my mom every day, sometimes multiple times a day, but that’s not the same.

Then again, I had no responsibility for anyone by myself. I had no kids, no spouse, no partner, no pets. I had no job and no house. My biggest responsibility was my car, and that’s relatively minor (and there’s no emotional attachment there at all.) It was all about me, myself, and I, and that suited me just fine.

And now I’m taking on new responsibility. That’s daunting, to say the least.

At least once an hour I find myself wondering if I’m pushing myself too hard. Was that walk too long? Will I regret it? Am I doing too much? Will I get sick because of it? Am I worrying for nothing?

That last one was answered when my knee started to buckle as I was walking down a flight of stairs, and I pictured myself tumbling down. Ok, maybe I’m not worrying for nothing, but I still might be worrying too much.

Because we all know how hard it is to adjust to a “new normal.” I’ve written about it many times and I’m sure others have too. We get used to doing things and find something that works and then there’s a change. Maybe the change is external: a new home, a new job, a new medication, a new season. Maybe it’s internal: a new diagnoses, a worsening of symptoms, an improving of symptoms. Whatever it is, it means we have to find out what our new normal is. That’s not easy. But that’s where I am right now.

There I was, seeing some improvement, enjoying where I was, just starting to find a groove in my new normal, and then things changed. And even when they change for the better, that can be a problem.

I once tried to explain my adrenal problems to someone by saying that any kind of stress could be bad – the death of a loved one or winning the lottery could each have a terrible effect on me. Of course, the effects would be different, but I do think that winning the lottery could have some bad short term consequences.

So that’s why I’m now worried. Because I’m not sure how much my poor body can handle. Maybe I’m overreacting. Maybe not. Unfortunately, I won’t know one way or the other until it’s too late to change things. There’s a reason one of the biggest categories in the sidebar over there on the right is the one called “Unpredictable.”

I’ll just have to metaphorically cross my fingers and hope it all goes ok.