What Are Mornings and Afternoons Like With Lupus?

I start to register pain as soon as I wake up in the morning. It starts a bit slow, thanks to the drowsiness of sleep, but within a few minutes, I’m fully aware of any joints that are angry because they weren’t in the absolute perfect position overnight. Finicky things.

I feel deeply tired. Even if I slept well, there’s just no energy available to me. Nonetheless, I force myself to twist open my eye drops, put them in, take my morning medications, and get out of bed.

Mornings with lupus

I get myself and my 2-year-old dressed, wake up my pet birds and head downstairs for breakfast. It’s challenging to move my body in the morning, especially my hands, but I do my best. Looking forward to breakfast, which is coffee and a smoothie, helps me start the day when lupus makes things hard. I have a delicious peanut butter banana smoothie so that I get at least one healthy meal in and buffer my stomach for my second round of medications.

Early morning typically is spent doing an activity with my son. It might be stickers, laundry, or maybe a quick errand if I’m up to it and we can do it safely. Occasionally, if we get a chance to have a safe play date then we jump at the opportunity and let the chores sit for another day. Seeing friends takes all my energy but is totally worth it.

Balancing work and lupus

My son is out of the house 2 or 3 days a week and that time is precious to me. That’s when I get to work. I feel a huge sense of fulfillment by writing and sharing my life with lupus. Not being able to work full-time has been very difficult to accept, but it helps that I do get to work a few hours a week.

Whenever possible, I take time to do physical therapy exercises that help with neck and joint pain. Sometimes I dance instead – it’s one of my favorite forms of exercise because it can lift my spirits. I often go to doctor appointments on my “off” days, as it’s hard enough to get myself through an appointment without a child in tow.

Lunch is a very casual affair. It can be anything from last night's casserole to a bowl of cereal. Cooking when you have lupus is no simple matter, and I've accepted that eating whatever I can get on the table is good enough. I’d love to have more meals that are healthy and well-balanced, but a peanut butter sandwich gets the job done – and sometimes that’s all we can ask for. I have my third round of medications at lunchtime.

The afternoon slump

The early afternoon tends to be quiet. I’ll rest while we watch a little TV. Then, if every star in the universe aligns (low pain, minimal fatigue, good weather, cooperative toddler) we’ll go for a short walk. What might be easy for others is no simple chore for me, I feel wiped out after putting on sunscreen, finding my hat, and putting shoes on my feet. But as long as I’m careful not to overexert myself, a walk is great for my overall energy and health.

The hour of 2 to 3 p.m. is quiet time, or it would be if my son was quiet. He stopped napping a year ago, which has been extremely difficult. I need a break in the day in order to keep going. Parenting is constant work, and I didn’t realize just how much my lupus would suffer without a peaceful afternoon break.

If I do get a chance to nap I try to limit it to 20 minutes, otherwise I wake up with pretty intense joint pain, fatigue, and an angry red malar rash. At 3 pm my alarm goes off to remind me to take my iron supplement. No matter how I change my diet I have always been anemic without an iron supplement.

Coping with pain in the late afternoon

In the late afternoon, we spend time in the backyard if at all possible. This isn’t easy to do, especially on extra cold or hot days, but I find that fresh air and sunshine can completely change my perspective. I'm usually in a lot of pain at this point, so I'll take any perspective shift that I can get.

Finding these moments that boost your mood and help you keep going is essential when you have lupus. On the hard days, positive moments are more challenging to achieve but even more important to your mental health.