In an attempt to get back to blogging primarily about how lupus affects my day to day life, I decided to share what a weekday looks like for me.
Wake up #1- 7:00 A.M: Mom wakes me up to go with her to get breakfast at QuikTrip. It’s my one guilty pleasure of the day and sometimes, it’s the only food I’m able to keep down all day. I get a maple bar and a 16 oz. Diet Coke. Due to my sleeping pill, I’m only about halfway conscious but am somehow able to hold a conversation with mom.
Get home-7:15 A.M: I walk up the stairs slowly since my knees have been bothering me a lot. I realize that I’m going to need to use a sports bandage on my left knee and wonder if the osteoarthritis is in this knee as well. I make a mental note to mention this to my rheumatologist next time I see him and to ask my primary doctor about getting back on the only arthritis medicine that works for me- Diclofenac Potassium. Once I get in bed, I open my laptop and watch an episode of House M.D. while I eat my breakfast.
Going back to sleep-8:30 A.M: Because of my sleeping pill and fatigue, I can’t stay awake during the mornings. I’ve tried many, many times but I just can’t do it.
Wake up #2- 12:30 P.M: This is when my day really begins. I’ll spend a few minutes getting out of sleep paralysis (a side effect of my sleeping pill) and then I’ll check various social media sites and the news. This is when I usually text my boyfriend good morning, and he likes to point out how long I sleep.
Lunch-1:00 P.M: Most weekdays, I’ll eat a bag of popcorn for lunch. If we have leftovers, I’ll eat those instead but since yesterday’s dinner was quesadillas, we didn’t. I really love the Act II Buttery Kettle Corn. Unfortunately, it’s only available in 3 packs so I usually have to buy two boxes at a time. While my popcorn is popping, I decided to be nice and unload the dishwasher and pick up around the house a bit. Once my popcorn is done, I grab a bottle of water and head upstairs. Once I’m upstairs, I realize I forgot my popcorn in the microwave and hobble down the stairs once more. When I’m finally back in bed with my lunch, I watch more House M.D.
Skype-2:00 P.M: Since I have a show on tonight, my boyfriend and I decide to Skype a little earlier than usual. He can tell I’m tired and not feeling my best. I begrudgingly admit that yes, I am in quite a bit of pain. He recommends me getting an ice pack, but I inform him that if I did that, I’d be putting myself at even more risk for damaging my neck and upper back by constantly exposing it to this kind of cold. He asks if I need a nap and I admit that I might, so we get off Skype. I go downstairs and take two Ultram and a 0.5 mg Xanax. The Ultram doesn’t really help with the pain but the Xanax is enough to lull me into a restful sleep.
Wake up #3-5:45 P.M: I wake up and am shocked at how long I slept. I realize my mother is getting off work in about 15 minutes and that I would like to Skype with my boyfriend some more, so we Skype until my mom pulls up.
Dinner-7:00 P.M: Mom makes Home style Macaroni and Cheese for dinner and we watch I Didn’t Know I Was Pregnant. The cats try to steal our food but luckily, I think we’ve about got them trained not to. They’re thrilled when they get to clean our plates for us, though. We have leftovers, so I’ll be able to eat them for lunch tomorrow.
Time with Mom-8:00 P.M: Mom and I go upstairs and watch Criminal Minds in her room. We let our oldest cat, Syphilis (yes, that’s his name.), in with us but not the other cat, since he likes to try to knock things over.
Relaxation time-9:00 P.M: At 9:00, I’m pretty tired but decide to wait until 11:00 or so to take my medicine. I watch another episode of House and decide to do some studying for my G.E.D. test. I buy the Math practice test from the testing company and score 160, which is likely to pass. However, it’s just barely in that range and so I decide to wait until I’ve studied a bit more to schedule the test. I still have the Science practice test to do, but once I’ve done it and I decide I’m ready to take the Math test, I’ll schedule them. I will have my G.E.D. before I go to Vermont in June.
Medications-11:00 P.M: I take my medicine and drink another bottle of water. I feed the cats and give them fresh water, too. Since I have to eat with my medications, I get a granola bar from the cabinet and carry that upstairs with me. I also take my ice pack upstairs.
This is the end of my day, as I go to bed at different times each night.
This is a day in the life of a lupus sufferer. I may seem lazy, but I would give anything to have been able to be more productive today. I wish I had been in college today. I wish I had worked an 8 hour shift at work today. Someday, I’ll be able to do that, but right now, all I can do is my best.