What the hell do you do all day?

I don't look sick.  I don't think I look as good as I did say in January.  But I didn't loose my hair.  I've lost weight, but nothing dramatic.  Usually when people see me their first comment is, 'Wow, you don't look sick at all'.  Is that a compliment?

The flip side of not looking sick is that it's hard for people to understand you actually are sick.  This is one reason why so often people with Lyme are told that it is all in their head.

I started writing in an attempt to help people understand.  One question I get a lot is - well what do you do all day?  I jokingly compare Lyme to princes behavior.  Here is why:

9:30am - wake up and begin the nausea battle
10am - make it downstairs, grab some toast, plop on the couch - round 1 of meds
11am - it usually takes me an hour to eat two pieces of toast while watching some mindless television on a very low volume.
12pm - round 2 of meds and the start of physical therapy aka walking to the post office
1pm - attempt to eat lunch.  usually I am too exhausted at this point to make food.  my mom leaves me lunch or makes it for me.  princess behavior.
2pm - round 3 of meds, which leave me full of headaches and the need not to be in light
3-5pm - downtime.  i usually retreat back to my room to turn lights and noise off.
5-9pm - round 4 of meds and attempting to eat. usually my best time of day
10pm - round 5 of meds and attempting to sleep

This is the complete opposite of my normal.  I used to wake up at 5:30am to bike to the gym before biking to work.  Expectations have always gotten me into trouble.  So I get it - you see someone who looks healthy and you expect them to be healthy.  It takes us all a while to get there.  But lets call a spade a spade - Lyme disease looks like someone is simply lazy.

Which for all of you who don't know me is hella ironic.  But my experience has been that everything about this disease is ironic.  Sing it Alanis