Sluggish September

And it's back...with the onset of September, and teaching full-time again, comes the chronic fatigue. I arrive home from work and lie down. On Saturday mornings, like this one, I sleep 10 or 11 hours and still feel whoozy, as if I'm walking through thick haze. My morning appetite is gone but I peel myself up to grab a bite to eat merely so I can take antibiotics. 

So many SHOULDS batter my mind.
I SHOULD exercise--if not a bike ride, at least a fast walk. 
I SHOULD do all the paperwork that is on my desk; or at least I SHOULD organize it (since I didn't get to it this summer because I wasn't feeling well until the last 2 weeks of vacation.) 
I SHOULD do the piles of laundry that await (but I have to get my kids to cart it up and down from the 2nd floor to the basement for me.) 
I SHOULD be doing all my physical therapy back exercises. 
I SHOULD call friends.  
I SHOULD go to the town homecoming football game with my husband (who took my son) because it would be fun and I'd get to see people. But I don't have the energy to talk with people in a crowded, noisy setting. Having folks over for a quiet, summer dinner is much more my style.
I SHOULD clean the house -- haha!
I SHOULD take my daily shower.
I SHOULD get up and take my antibiotics and get the kids their medicines (this one does get me up.)
I SHOULD give the dog some loving.
I SHOULD figure out what days I'm taking off from work so that I can still have spoons left to continue working (see this wonderful essay by Christine Miserandino.) 
I SHOULD work on the PANDAS conference we're planning (and I will do this) and the Lyme Challenge we're planning (and I will do this as well.)
I SHOULD go to my daughter's first soccer practice (my husband will do this; he is great about bringing the kids to all their activities when I don't feel well.)

I'm actually very fortunate and grateful that:

1. I CAN work and have a great job.
2. My husband is a wonderful partner who also makes good dinners.
3. I have connected with so many people who share and understand my experiences, both with my kids being sick and with my own challenge.
4. I have a comfy bed.
5. I have weekends off. 
6. I have a family that puts up with my fatigue and just teases me about finding me on my bed again.
7. I have a dog that loves me no matter how much attention I give him.
8. I know that I will accomplish many of my goals. 
9. I'm not as brain-foggy as I was a couple of months ago (and even then, I was able to push through and write curriculum for school.)
10. My son is doing SOOOOO well--this feels like a miracle. 

I'm still trying to figure myself out. When I'm really sick, I become an introvert (according to those online tests) but when I'm feeling well, I'm a mix, with many extrovert qualities. Who am I? Well, at least I know...but many of our children who have Lyme and/or PANS don't yet know who they are. I try very hard to differentiate between what characteristics belong to my daughter and what characteristics belong to the disease that is attacking her. "This is the disease," I tell her. "It's not who you are."

After all, the changes in my son are immense. While he's still on quite a few medications and stress can increase his symptoms, he is determined to achieve at the school he has returned to, full time. Not just determined to achieve, but confident that he can. He has friends, a busy social life, a new camaraderie with his sister. 

So, if I don't pick up the phone to call friends, or even email, much less go out, don't take it personally. I'm at home in my small men's underwear/shorts covered with tiny skulls (my husband rolls his eyes), and my husband's old gray long-sleeve shirt, just lounging atop my neatly-made bed, either reading, writing or sleeping. Or, if I'm lucky, correcting papers. And breathing the fresh air that blows in from the open window.

Tomorrow, I'll be up and out. I hope. One thing is for certain: On Monday, I will be at school by 7:30, showered, ready for the day. After all, I have to make money to pay for our medical bills. Good thing I love what I do. And next Friday...crash time again. Hey, we all need one day of rest.