I talked previously about the amazing experience I had as an intern in the Patient Advocacy department at the Hospital for Special Surgery in New York City.
By part-time, I mean 9 a.m. to 5 p.m. four days a week. The day I am not working, I am in school.
Being a chronic student, I have been used to a having a fairly flexible schedule. That does not mean that life was that much easier, but I have often thought that if I had been in a full-time job when I first got sick, and was not in a graduate program, I probably would have gotten fired.
I had endless amounts of appointments and tests, and I was able to schedule them around a few classes. I rarely had an entire day spoken for like I do now.
And now, I’m in the real world. The working world. And I really don’t know how people do it, especially chronically ill people.
That might explain why so many chronically ill people I know are self-employed. You can make your own schedule, and you aren’t necessarily forced to call in sick. You can work at home and in your pajamas, if you need to.
And because I am being paid now, which will make life much easier – and because I love what I am doing and don’t want to miss a minute of it – I am hesitant to miss work in order to schedule doctor’s appointments and tests.
I just scheduled an echo-cardiogram for 7:15 a.m., so I can make it to work on time.
Further, when do I have time to do errands? I have learned recently that the post office near me is only open 9 a.m. to 5 p.m., and the same goes for the library.
Not only that, I am totally exhausted all the time. I fell asleep at my desk last week.
I get home from work and I am lucky enough if I make it through dinner before I crash.
This is a new and exciting time in my life, but I am struck by the reminder that someone my same age, who is not chronically ill, would be able to navigate this work schedule with no problem. To most people, 9 a.m. to 5 p.m. four days a week is no big deal.
The other thing is that recently a lot of opportunities have come my way from blogging, and I am finding that while I really want to do everything, there is a lot that I cannot do during work hours. This means having to pull away a bit from something that has really sustained me the last six years.
And that is a hard realization to come to.
I hope that as I continue in this job, and as school wraps up, I will be able to find a better balance between work and everything else. But right now there is no balance. It’s work, work, work. Get up at 7:30 a.m., and three days a week, I get home around 6 p.m., and two days a week, I get home no earlier than 8 p.m.
So when do I have time to do anything? Most importantly, I have to continue to focus on my health, although so far it has been taking a back seat to everything else.