A woman rests on the couch with scattered blocks on the floor around her.

A Day in the Life With Lupus: Evening and Night

Around 5 pm, when my husband is done working, I usually take a break to rest before anything else. I’ll pass the care of our son on to him and go lie down. While the early evening is the best time for me to pause for rest and self-care, especially after a full day with a 2-year-old, it’s also hard to have to take turns parenting.

Because of my lupus, my husband and I tend to take shifts with our son. This means less family time and less one on one time for me and my husband. It can make things difficult because I rely on him for care and emotional support. But when I have to go rest he must be the default parent, which gives him less time to meet these needs. It is yet another way that lupus makes life harder and we have to try to overcome it as best we can.

A light early evening load

After a brief rest, I turn my attention to any easy tasks on my to-do list. Easy is relative, depending on the day, but these are usually things like taking a quick shower, paying a bill, or placing an online order for grocery pick up later in the week. I try to get 1 or 2 things done because I know I’ll be way too tired to do anything by 8 pm. Life is very full these days and I have to find ways to accomplish things despite having limited energy.

At this point, I might help my husband cook dinner - and by help I mean I’ll combine the ingredients after he's prepared them or give him instructions while lying on the couch. I dearly miss being more capable in the kitchen but we have to eat and I have to accept my limitations. It’s not within my capabilities right now to stand up for long periods of time or chop vegetables for more than a minute or two.

And – let’s not forget – dinner is time for my fourth round of meds.

Sometimes I help my husband get out the door for an evening activity. He takes our son to a weekly swim class, goes out to play tennis, does the grocery shopping, and occasionally drops our son off at his grandparents for an overnight stay.

Driving at night usually isn’t an option for me, and neither is coming along for the ride. Especially when my husband goes grocery shopping since it’s usually after bedtime and someone has to stay home with our son anyway. It’s hard to accept that I'm always the one staying home because of my pain and illness. I try to focus on my gratitude that my husband can and will do these things. Instead of struggling to walk the aisles of a grocery store, I am able to rest on the couch.

Still, it’s important to acknowledge that losing independence because of lupus is very hard. It’s a continual loss, so it can also seem like a continual grieving process. I feel like I miss out on a lot and the evening can be one of the hardest parts of the day for me, because I’m tired, in pain, and lonely.

Switching into night mode

Around 8 pm I'm generally very exhausted and in pain, so it's rare for me to do something other than watch TV at this point. I try to see it as my guilty pleasure. Since it's all I can do I might as well enjoy it. I used to love reading in the evening but my eyes are generally too dry to allow me to read for very long.

While I’m watching TV I’ll often attempt some pain management. I might use my massage gun, do some easy stretches, or work through some deep breathing to at least take my mind off the pain.

The end of the day is hard. Sometimes I wonder how I'll ever walk up the stairs to my bedroom. Just doing simple tasks, like refilling my water and finding my way to bed, can take just about everything I've got left.

I've got a quick but thorough bedtime routine that includes taking my blood pressure medication, brushing my teeth, applying rosacea ointment, and putting in eye drops. In an effort to sleep well, I make the room very dark and turn on my fan for white noise. I get settled with many, many pillows on a high-quality mattress that I'm very grateful to have. And last but not least, I close my eyes and say a quick prayer for that elusive good night's sleep.

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