Wednesday, October 22, 2008


I haven't been able to work for over a year now. I'm very fortunate that my employer values their people. They've been very patient, holding my job all this time, waiting until I can return. Even so, there's a limit to everything, and I feel some time pressure to return so I don't end up losing my job. And then there's the obvious financial incentive...

Lyme is a roller coaster ride. Day to day, and week to week. The symptoms are ever-changing, waxing and waning. When I feel reasonably well for a few days, I contemplate trying to go back to work part-time. Then, usually within a day or so, reality sets in, and I realize it's not yet feasible.

I work in New York City, which is a long commute by train and subway. While I can do some work from home, I need to be in the office at times, and especially at first, since I've been out so long. Even though I'm having the occasional good day, most days I'd be unable to handle the commute (there's no way I could even walk across a crowded Grand Central Station), let alone being in a crowded open-space office environment. Fluorescent lighting, multiple conversations going on around me, required multi-tasking like speaking with someone, and then the phone rings. And then there's the actual work - specifying and managing complex computer systems. Stuff that used to seem routine, but that now just causes my head to spin.

Early in September I optimistically told my employer that while I still thought it was too soon, I'd try to return part-time starting in mid-October. I wanted to give them, and my family, some feeling of progress.

As the time got nearer, I was pretty sure it wasn't going to be possible, but kept an open mind, and tried to conserve my energy, though it doesn't really work that way. I was scheduled to go into the office, for the first day in over a year, on Thursday. The Saturday before, as a little test, I decided to help my wife pick up the vegetables at our local organic farm, where we buy a "share" annually, and get to come each week and fill up a couple of bags. It's a mile down the road, and is a place I feel comfortable with. I should be able to do this, right? I'll let my wife carry all the heavy stuff.

Well, within 10 seconds of walking into the barn, I start losing my brain. There are people! As in more than one person at a time. Oh goodness! They're all walking around, changing directions, I can't predict - they're bumping into me because I'm frozen in place. I'm afraid I'll be knocked over. There's a toddler running around, enjoying the sound of his own voice, fairly loud. Not bothering anyone else, I'm sure. But for me, with each loud utterance, I could feel myself spiraling deeper into a non-functional state. With difficulty, I made my way to a corner, and just stood there, gathering up the energy and brains to make my way back to the car.

OK, big surprise, I'm not ready for prime-time yet. So I called work a couple of days later and told them I couldn't come back yet. They understood, and are doing what they can, but I may end up losing my job. Not sure yet how it's going to play out. Whatever they have to do, I certainly understand.

This week I feel a tremendous weight has lifted. I wasn't really believing that I could return to work, but was trying to convince myself, in spite of daily debilitating symptoms. A formula for stress. So now, back to getting better over the long haul.

I think I'm on a good path to recover, but it's not going to happen on any timetable that I try to force. It's a process, and one that I can only control indirectly, by taking my meds, and doing some wellness stuff like gentle stretching and meditation. I really have no idea how long it'll take.


Naomi Adams said...

Hi Joe:

Wow. I can imagine how difficult this decision was for you. If you felt relieved after you made that phone call, then you've definitely done the right thing for you and your body. It's a step in the right direction. You have to put your energy into getting better before you can go back to work.

I admire the strength it took to recognize where you are right now and what you need to do.


Anonymous said...

Hi Joe,

We talked about the episode at the farm, and I also think realizing you can't return to work any time soon and informing them of your decision is a big step in the right direction.
It took courage to do that. You're doing what's right for you at this time even though I know it was a difficult decision.

Andrea Runyan said...

Your post helps people to understand why it can be hard for Lymies to return to work. A lot of things that don't affect healthy people can be really hard for us.

I think that when you're ready to work again, you'll actually feel eager to do it, so don't pressure yourself before then! that kind of pressure won't help

Joe said...

Hi Andrea,
Thanks for your comments.

Yes, I agree about knowing when I'm really ready.

When I spoke with my boss for a while shortly before the events recorded in the post, he filled me in on the status of the various projects.

For the first time, I was actually able to keep it all in my head and not lose track. In fact it sounded *interesting*. I'm thankful I seem to have gotten that far.