Your friends and family suggest you get a job. After all, you did go dancing last weekend, didn't you? (But you, and they, conveniently forget about the post-exertional malaise that greeted you the following morning when you parted from your bedsheets...)
And on that almost normal day, you think, "Hey, I've got energy today! Maybe I'll move a mountain before breakfast and send out fifty resumes, and then after breakfast, call a couple hundred employers....
If you're like me, you'll feel guilty if you don't don some Superwoman spandex on those days and at least conceive of productivity...
Last year, my symptoms abated a bit and I decided to work part-time as a medical interpreter for Spanish-speaking patients. What better job, than to do something I loved, and for just a few hours here and there? Besides, it would take my mind off my illness, right?
Well, I soon had to take off the Super Girl Hose, as I discovered that any appointment before noon wreaked havoc with my circadian rhythm, as the anticipation of having to get up by a certain time ensured that I didn't sleep well. Driving from clinic to clinic sucked up more adrenaline than I had in reserves, as did dealing with impatient doctors and fearful patients. On top of it all, my boss had anger and memory problems and was prone to random outbursts and not paying her interpreters for their work. The cherry on the cake of inconveniences was that I no longer had as much time as before to dedicate to my healing.
Since then, I've thought about work again. Every day when I feel decent and look at my sorry bank account and my condo in foreclosure I conceive of putting on the Superwoman suit again. But then I recall last year and reconsider.
Sadly, some people with Lyme disease don't have a choice. If you have children to support or don't have relatives to care for you, you work or else starve and lose the roof over your head. But for others who have family to at least partially support them, the option of being able to take time off to dedicate one's healing is a possibility, if not a necessity.
Fortunately, I am able to live with my parents. I'm still broke and life would be a baleful easier if I could hold down a job, but lately, I've realized that my current therapies ARE a full-time job and my healing is dependent upon these as well as lotsa lotsa rest. I don't like that; I'd rather be Wonder Woman and not allow my waking hours to be consumed by therapy. But if I ever hope to work full-time again, I need to be OK with devoting my current life to finding a way out of the Lyme labyrinth.
You may be led down a different road than this, but if you decide to stay home and take care of yourself, don't feel guilty! Sometimes healing is a full-time job, even if you are able to go out and salsa sometimes on Saturday night.