This past week marked a big milestone for me. I’ve written a lot about all the amazing and terrible things that happened last year, and talking and thinking about each of them as their anniversaries pass has triggered conflicting emotions. But last week in particular was the one-year anniversary of leaving my job, which was one of the emotional highlights of my year.

And when looking back objectively – in spite of everything, it’s been a pretty incredible year for me professionally.

Growing By Leaps and Bounds

It’s taken me a while to realize it, but despite my challenges and my anxiety over all the uncertainty involved, I have to recognize that my consulting work has been really solid and consistent so far. I’ve worked with a handful of great clients since I started, with most of my income coming from two clients in particular. And I recently started an ongoing retainer with one of them, which is a great move towards more stability.

I’ve also raised my rates substantially with both existing and new clients. I’m focusing on doing more valuable work for businesses, and looking at and promoting myself as more of an advisor on web strategy and development practices than a commodity programmer. That mental shift alone feels like a big accomplishment.

Financially I’d say we’re pretty much breaking even right now, and things are still pretty tight. I need to build up more padding in my bank account, and I need to bring in more client work to diversify and reduce my risk. I don’t feel like I’ve put enough energy into looking for leads. But I still feel like I’ve accomplished a lot just by being able to get by, since I wasn’t sure if I’d even be able to when I started down this path.

But really the more important growth has been for me personally – in my own mental state and in my confidence level, and in learning to deal with my emotions and anxiety. In a lot of ways I feel like a different person than that guy who left his job a year ago.

I’m still struggling with my dysautonomia, and symptoms haven’t improved much this year. But I’m learning to accept that struggling is just my reality right now, and that the struggle doesn’t define me. And that I can cope with it.

And I’ve found that learning to cope is a big part of succeeding professionally.

The Daily Grind

A good example of how I’m learning to cope is in how I’m now handling my schedule.

The biggest challenge I’ve been running into working for myself while dealing with illness is just trying to make my daily schedule work. Sleep problems, fatigue, and brain fog vie for attention with my client work, growing my business, and spending time with my family. It’s a tough problem to solve, and has felt like an overwhelming challenge. My “second job” is always there.

The reasons will probably be clearer if you look at my daily routine:

Around noon to 1pm – Wake up and slowly drag myself out of bed in a physical and mental stupor. Insufficient sleep combined with orthostatic hypotension means my body takes time to adjust to being vertical after laying down for several hours, and the fatigue and lightheadedness I feel getting out of bed make it a challenge every day. (This effect has been getting better since I started using a wedge cushion to sleep on, but it doesn’t entirely eliminate the problem.)

From around 1 to 5pm – Stumble around my house like a zombie, coffee in hand, munching on some (late) breakfast or lunch, and staring at my computer trying to make sense of anything I’m looking at. Basically succumbing to the brain fog I wrote about previously. I put on my compression stockings, take my pills, and wait for them to kick in to help with the lightheadedness and increase my mental acuity. I struggle to do some client work, but usually don’t make any progress on anything complex like programming (the primary part of my work).

At some point I attempt to get a shower, which is a crucial part of leaving the house since it increases my blood flow and wakefulness, but even that’s a challenge since it involves standing for while to shower, dry off, and get dressed afterward. By the time I’m done getting dressed, although I’m sapped of what little energy I had I’m actually awake and alert, and finally reach a mental state to be able to go somewhere or get some work done – usually at around 5pm.

From 5pm to 10pm – As I’m finally hitting my stride and am just ready to be productive, my wife and daughter get home from school. My wife Amy works at my daughter’s day care, so they come home together and usually crash after an exhausting day. So I spend time with my little girl, maybe help Amy with dinner, eat together, bathe and put the little one to bed, then relax with Amy briefly before she has to go to sleep to get up early the next morning (I typically read to her to help her relax and fall asleep).

From 10pm to 5am – I finally really get to work, balancing catching up on client work and any other productivity tasks I need to take care of – from personal and business finances, to writing or growing my business, to hitting the gym around midnight 2-3 times a week. This becomes a nightly crunch to get anything done that I can in just a few hours before I start to fade and my brain starts to shut down again. But even when that tiredness comes on and I try to turn off and relax, it takes hours to reach the point of being able to sleep (which can mostly be contributed to my delayed sleep phase disorder – another common side effect of the EDS I’ve written about previously).

Lately I’ve been struggling to get to sleep before Amy wakes up, but usually I don’t succeed…

My current effort to improve sleep involves these stylish blue light-blocking glasses, and Benadryl.

The biggest epiphany while looking at what I deal with is recognizing that I used to deal with all this as part of a full time job, and did it for a few years. I’m not sure how I ever dealt with it at all – not to mention dealing with the emotional drain and stress of an employer who was hostile to my difficulties. I sometimes had coworkers over the years who understood and would let me lean on them and support me however they could (for which I’ll always be thankful)… but the majority of places I worked were geared towards making me feel like a problem they had to deal with. So it’s not too surprising how broken I was by the time I took a stand and left. And it’s better in that sense.

But it’s still hard. The end result of all this is that I feel frustrated, cooped up, and isolated. I struggle to be productive doing client work during the day. I try almost daily to get up the energy and focus to get out of the house, whether it’s to run errands or go to a coffee shop to work, just in the hopes of getting some sunlight and being around other human beings. I recognize that although I’m a fairly introverted person, I need people around at least some of the time. But it doesn’t often work, and I go for days without leaving the house during daylight hours. I’m often invited out to lunch, coffee, or coworking with friends and other remote developers, and I rarely make it. And that isolation has a huge emotional impact.

That’s not to mention the harder and more direct impact on my business – the stress of struggling all day to accomplish any client work when my brain and body refuse to cooperate. I’ll stare at code trying to solve some problem, in hopes I can wrap it up and maybe get ready to go somewhere. I’ll rack my brain trying to make sense of a method or some complex system architecture. This frustrated feeling compounds throughout the day as I feel time ticking away.

And one of the big things I realized recently is that I’ve been reaching another point of burnout, partially because I have no time in my schedule to just relax and unwind. I’m constantly on the go mentally or physically, or struggling to get to that point. I don’t play games, don’t watch much TV, don’t watch movies, don’t read much, rarely see friends. I just don’t have time.

This schedule and situation is incredibly draining, and feels like an insurmountable challenge to adjust and overcome. So I’m doing what I can do deal with it.

I’m accepting it.

It Is What It Is

Given the pain, symptoms, and disruption of one’s life that people with chronic illness suffer, it might seem strange that the hardest thing to deal with is the emotional aspect of being sick.

A patient friend recently told me she’d been thinking about acceptance of her situation, especially being sick and spending a lot of time in the hospital. At the same time I was writing my last blog post about pushing myself forward and not accepting that I can’t do something until I try. It seemed like the two ideas were completely opposed. I almost felt guilty to have that attitude when she was reaching this stage of acceptance of her even more difficult situation. Like I was implying through my blog post that her acceptance was the equivalent of giving up.

But I’ve realized the two aren’t mutually exclusive. We can push ourselves and redefine our understanding of our limits, while recognizing the reality of our situation, and learning to accept it for what it is, today. If anything, that acceptance is necessary to move forward towards doing something about it. We need to be able to say – this is my baseline and it sucks, but it is what it is so let’s recognize it and build on it. Acceptance doesn’t mean being satisfied with something. (As always, fellow patient Michelle Roger says this way better than I ever can.)

For software developers it’s similar to taking on a project that needs major work, and that might be organized around a shaky or non-existent process, and being told to fix everything and take it to the next level. The reality is you can’t fix anything until you study the project and understand what’s currently wrong, and everyone involved accepts the situation for what it is, good or bad. Then you can fix things. Then you can grow.

This acceptance is my big accomplishment for the last year of working on my own. I feel like for the first time I sort of understand my situation and am capable of emotionally handling it. And this has had a big impact on me professionally – I’ve learned to accept both my illness and my situation for what is, and also that I’m capable of being a successful developer and consultant in spite of it.

Looking back on this past year objectively has proven that.

Making Changes

What this means practically is that I’ve started embracing my schedule instead of fighting it. In the past month I’ve been shifting my work hours around so that I’m only doing mentally-intense work at night, and during the day I’m focusing on dealing with my symptoms, doing low-mental intensity business tasks, writing, and just… relaxing.

In the afternoon after waking up, I’m focusing primarily on dealing with my symptoms. I might try to get out of the house, but I’ve learned not to be upset when I don’t make it. I’m writing more (like I am right now), which is more natural in any state I’m in, and less cognitively challenging, and working on my business and other personal tasks I need to get done. Maybe I’ll put on a movie, or watching some online courses. I’m basically spending my daytime hours working the “second job.” And as I mentioned in my last post, I’m also trying to get to the gym during the day, but that’s been slow going. I’ll keep trying.

So after spending time with my family in the evening I jump into getting my client work done. I’ve talked to my major clients so that they understand my schedule (without getting into the details) and that I’m primarily working late at night in my time zone – which hasn’t been a problem for any of them. And I’m fixing my late-night work hours so that I can better cut myself off before my brain starts to fade and I can start to relax and work on sleep.

Then after working till the wee hours, I’m not stressing out about how late I get to sleep. It sucks to be wide awake at 6 am, but – it is what it is. I need to make progress on improving my sleep schedule, but it’s not the problem I’m trying to solve right now, and I’m going to stop letting every morning feel like a failure.

In fact these changes don’t do much of anything to really improve things as far as my physical health or schedule in general, but it’s been an enormous improvement in my attitude and stress level. I’ve been feeling like I’m more in charge of my situation. I own it instead of it owning me. If my illness is a second job, I’m promoting myself to be the boss of it.

But I’m also getting help. Our other big change is that my wife Amy is leaving her job – her last day working at our daughter’s day care is tomorrow, after which they’ll both spend the summer at home and with me. I won’t get into detail but she reached her own burnout point recently, and it was time to make another change, for all three of us.

(Short version: appreciate your day care provider. They work hard to take good care of your kids, and don’t make much for doing it.)

We basically realized my consulting is a much bigger source of income than her job and that if I could get to the point of working a few more hours every week, we’d more than make up for her paycheck. So while she works to get her own online craft business started, she’ll be helping me work better and improve my business. She’ll help me get up earlier, work with me to keep to a good schedule, push me to get to the gym, make lunch, and do other things around the house so that I won’t need to worry about them and can focus on the work.

And we’ll all spend more time together. More than we have in a long time.

I will reach a point soon where I’ll start making small incremental changes towards actually improving my situation, but I feel like these initial shifts give me the baseline I need on which to build that improvement.

A year after leaving my job and starting to work for myself, I finally feel sort of free.



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