Lupus: A Day in the Life

May is Lupus Awareness Month! Having been diagnosed with lupus five years ago, I felt it was basically my duty to write about it. If you would like to learn more about what lupus is, how it affects people, etc, I encourage you to visit lupus.org. This isn't a post like that. Lupus affects each person differently, and this post is about how lupus specifically affects me in my daily life.

7:15am --

• Wake up to alarm
• Take my medicine (only one pill this time)
• Go back to sleep

7:30am --

• Wake up again to alarm
• Time to test out my hands for the day. They hurt, but, spoiler alert, they hurt every day. My fingers and wrists are swollen and painful, which has been typical for the past few weeks.
• Get out of bed and make a mental note to seriously talk to my doctor about my hands the next time I see her.
• Shower in HOT water. This helps my stiff, sore hands and really loosens them up. 
• Attempt to do my hair. After I'm done brushing it, I opt for a quick bun because my hands are already too sore from the brushing. I need to save energy for breakfast and packing my lunch. 

8:00am --

• Time to make COFFEE!!! *insert cheering*. Coffee is a really exciting part of my day, but as of late kind of sad as well. I've noticed my hands getting a lot weaker. This makes it hard to hold and control my coffee mug in the mornings. I have to remind myself to go slow and use both hands, which is harder than it sounds.
• I quickly throw various food items into my lunch box and whip together breakfast.

8:15am --

• It's been an hour since I've taken my medicine, so I get to each breakfast now. Most importantly, I get to drink my coffee. 

9:00am--

• Time to start class/work/research/whatever is in store for the day.
• Some times during the school day I find it really easy to stay on track and keep up in class. Some times I am in pain, tired and just miserable. Those days drag on the longest.

3:00pm--

• This is when I typically head off to work for the afternoon. If I don't work, which is very rare, I sleep. Because, ya know, by this time I am usually EXHAUSTED.
• This also happens to be when I inhale various forms of sugar & caffeine. Whatever it takes.

6:00pm--

• Finally off work!!
• Now I come home, eat dinner, and take care of any housekeeping type things I need to do.
• More caffeine. 

7:00pm--

• Time to start on homework for the night. 
• If I don't have homework (unusual) I lay in bed or on the couch and watch TV. 
• At this point, I'm basically wasting time until it's somewhat acceptable to go to sleep for the night.
• The exhaustion. Is. Real. 

9:15pm--

• Assuming I haven't been eating up to this point, I either have a snack or a glass of milk. Or both. This helps protect my stomach from the obnoxious amount of pills I'm about to take.
• Time to take those pills. All 10 of them. Yup. I am now up to 11 pills for the day, IF I haven't had to take any ibuprofen. So, in a typical day I take over 11 pills. It's a fun life some times.

9:30pm--

• This is officially my bedtime. No jokes. If I have to stay up later than this for school, I am so dang tired! By this time I am so, so ready to be out for the night. My friends make fun of me but I don't even care.

There you have it, a day in my life with Lupus. One day after Lupus Awareness Month ended (: Some days are better than others. Some days I feel almost no pain, and other days I am confined to my bed. Overall, I have a great doctor and a great support system, and my lupus is pretty well controlled. Some days really suck, but I am actually really lucky and know that it could be worse!

--Kristen