There’s no such thing as a chronic illness schedule

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.

11 Responses to There’s no such thing as a chronic illness schedule

  1. seachy says:

    Reblogged this on Seachy Waffles On, Chronic Pain is a game changer and commented:
    A great little read, I know the frustrations all too well :-/

  2. Megan S says:

    This is something I struggle with as well! I feel so guilty when I can’t meet the deadlines discussed with clients because my health gets in the way. Longer term I would like to set up more passive income stuff (the Foggy Frog book should be out soon so that’ll be my first passive income item) but for now I just do what consulting work I can.

    I have such problems just keeping up with what I’ve already got on that sometimes it feels like I’m going backwards instead of forwards!

    • chronicrants says:

      Maybe sometimes you do go backwards, Megan S, but you must be going forwards even more if you’ve got a book coming out! What’s Foggy Frog about? Who’s the intended audience? Congratulations!!

      • Megan S says:

        Thanks, I do tend to go both backwards and forwards. I can be moving forward for several months and then end up back worse than I was at the beginning of that time and having to start all over again.

        The book is aimed at those who have loved ones or friends with invisible illnesses to try and increase their awareness of what an invisible illness is like. The concept of the book is a simple introduction to the different types of symptoms those of us with invisible illnesses deal with on a day to day basis. It’s basically a young girl introducing each of her symptoms as a character that can be used to explain to children or adults what a person may be dealing with on any particular day.

        For example, if I’m having a very foggy, forgetful day I’d say that Foggy Frog is visiting at the moment. If my hands and feet are full of pins and needles then Needling Numbat is visiting…

        It’s written so that it would be suitable for young children as well as adults. The story itself pretty much just introduces the characters and then there is an information page at the back with a little more detail.

        The goal is for the book to be just part of a larger campaign to raise awareness.

      • chronicrants says:

        That sounds like a great book! I hope you’ll comment again and let me (and my readers) know when it’s out! I’d love to see your book take its message far and wide!

        Yes, those setbacks can be really tough. Mine tend to be more frequent, but it’s the same idea. I wonder how Foggy Frog would handle something like that? 😉

      • Megan S says:

        I definitely will!

        I’m trying to work out how to deal with setbacks. I have shorter set backs more frequently (read a day or two each week) but the big ones that seem to last for weeks or months seem to come once or twice a year for me.

      • chronicrants says:

        Yeah, those setbacks are rough. I hope you can figure out a way to deal with them.

  3. stuckintexas says:

    I have the same issues. Even personal home stuff can get away from me. I had to really push myself to do our taxes and our son’s so that the following week I’d be up to completing the FAFSA for his financial aid.

    I seem to have the best cognitive function from 1-5 am, or it just could be there’s no distractions at that hour.

    I’ve tried a couple online type jobs that let you work whenever, but they all want a minimum number of hours or amount of output. I couldn’t keep up 😦

    • chronicrants says:

      It’s great that you got your taxes done, StuckInTexas! That’s wonderful! I agree, doing those home things can be so difficult. I think it’s important to celebrate the things we DO get done. And I have the same problem with those work-from-home jobs that have minimum hours. That’s why I’m trying to start my own. But that really takes time too. There’s just no good answers for me at the moment, but I’m working on it.

  4. carole468 says:

    I can totally understand what you mean. I had a part time job working 20 hrs a week and in the last year I was there I had to decrease my hours 18 and then 16 but I could tell the staff members (apart from my close friends there) didn’t understand why I couldn’t do the longer hours. Especially as like you, some days I could have worked on but others were impossible. Now I am looking for a job again because I am on ESA but worry about how I can commit to certain hours on certain days. But of course the powers that be don’t take this into consideration so I will have to take sick leave when I can’t drive because I have had to much medication due to the pain. I am also looking at working from home as I can’t see any other way 😊

    • chronicrants says:

      I hope you find a way to work from home, Carole! I understand why some jobs require sticking to a schedule (like being a school teacher or a pilot) but I think many jobs could be worked flexible hours, if only employers would be willing to give it a try. And it would sure help out a lot of us!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: