A few days ago I realized that Tyler’s daycare was going to be closed tomorrow for a Teacher In-Service Day and the anxiety started because that meant a three day weekend with my son home. And then the guilt started, and the fear.  When Tyler is at daycare I can sleep the 12+ hours I am currently requiring to function at any level.

Of course, this is impossible when he is home.  Very often Tyler will not nap on the weekends. Usually by Saturday afternoon or evening I am having a fatigue meltdown and on Sunday night I am in a cycle of pain that seems like it will never stop.  Often on Monday I am too exhausted to go out to even a doctor’s appointment.

This has been going on for over a year since I’ve had Lupus and especially since the chronic pain in my calves, for about six months.  My husband will wake up with Tyler and I will go back to bed after changing him, and giving him some milk or snack.  I then set my alarm for about 9:30.  It still isn’t enough.  I wake up, make a real breakfast and then unless he naps I am up for the day.

Sometimes, my husband isn’t feeling well either and we don’t get out with Tyler at all.  Those are the worst days for me as a sick mother.  Hopefully the warmer (sunnier?!) weather will make it easier to at least get outside, even if we just blow bubbles or draw with sidewalk chalk. Our apartment’s pool is open, but I wonder if I will have the strength to be able to keep up with him, and then there is always the consequences of overexerting myself.

I wish I was exaggerating, but I am not.  Weekends are Hell for me and now we have a three day one.  It is so hard for me to write this but I know I am not the only chronically ill mother who feels this way.  It’s not about will or desire. When I was well, I loved spending every single second of my free time with Tyler.  I was endlessly fascinated by him and enjoyed taking him to the park, playing with him, singing to him, reading…whatever he wanted.  When I was well and working I treasured my weekends, holidays or any days off with him.  Now I am home all day and he is in daycare.  On the weekends he misses me so he is very attached to me and it is hard to lie down, especially when he is too young to know what is going on with me.

I hate that my diseases are ruining the precious times I should be having with my little boy and I wonder how long this will continue?  Tyler and I deserve a break.