As a woman and a nurse, I am a natural caregiver. It’s in my blood. Even when I was a little girl, caregiving was my thing. Of course this caregiving usually extends to others, not myself. When I found out I had lupus, I had to learn to care for myself and make sure I was putting my physical and emotional needs in the forefront. I’m single without children which made it easier to focus on me. I don’t know how all you moms and spouses out there do it. Fast forward a few years and my body tells me when it needs to rest or needs better nutrition and I’m pretty good at listening. But something happened in October that changed my life and the lives of my family.
October 18, 2018 my sister was shot while driving home from work. We don’t know who or why. It was an intentional act with a seemingly random victim. She struggled through three surgeries and came close to not making it. She had major internal damage and a spinal cord injury that left her paralyzed in the lower half of her body. My sister is a warrior. Very few people have the strength to deal with what she has gone through. I could go on and on about how amazing she is but I want to talk about what it’s like being a caregiver when you have lupus.
I know many of you lupies are caring people and have to intentionally make caring for self a priority. But what happens when it also is your responsibility to care for someone else? Sometimes as lupus warriors need caregivers ourselves. How do we balance giving our all to care for our loved ones while also caring for ourselves?
I heard a saying once that took some time to sink in for me. “Self care is other care.” I believed it intellectually but it didn’t hit home until my sister was injured. I was staying up odd hours to sit at her bedside (we had a rotation schedule so that someone was with her 24/7), I was not eating my regular diet, my routine was out the window, I was stressed, I was caring for my sister as well as other family members, I wasn’t putting myself as a priority. Thankfully I have an amazing family. My mom recognized that I was starting to be fatigued and advocated for me to get extra sleep and not take so many night shifts. It was sooo hard for me to back up and let other people care for me and my sister (she’s my little sister!) but I realized that accepting help and taking care of myself (which mostly meant sleeping) would allow me to be more helpful in the long run. My sister has a long road of recovery ahead and I am privileged to spend the next few months with her. Pacing myself and getting what I need for my body is going to allow me to be the best help to her that I can be.
So these are the things I am doing to help myself:
- I go to vegan restaurants in the area because that’s what I love to do
- I allow myself to sleep in when I need to (as much as possible in a hospital)
- I take advantage of people visiting to take naps
- I listen to Christmas music
- I exercise (swimming, running)
- I take long hot showers when I can
- I am taking an evening off to go to a concert and trusting that the nursing staff can help care for her for one night and not letting myself feel guilty for that
- I signed up for a sprint triathlon near my sister’s house in March so I have something to work towards
- I take time to pray
- I listen to my body; when it tells me that it is not doing well (through joint pain, headaches, fogginess, fatigue), I take extra steps to help it (cutting out bad foods, increasing good foods, sleeping extra)
My sister is so great and often reminds me to rest and checks in often to make sure I’m doing ok. I also know that there will come a time very soon when my sister won’t need my help. It is a bittersweet thought. I’m sure it is harder for those of you who don’t have an end date to your caregiving duties. That is when it is even more important to pace and care for yourself.
So all of this to say when you have lupus, life can be exhausting. When you’re a caregiver life can be exhausting (even when you’re caring for the most amazing person ever like I am). A combination of the two can put anyone over the edge. Taking care of you and your lupus often gets placed on the back burner but don’t let it. I know it sounds cliche but self care is other care! Give yourself a chance to take a break or do something for yourself without feeling guilty about it! Let others help you without feeling the need to “return the favor.” Ask for help! Do it for you, for your lupus, for your loved one.
And if you don’t have someone you’re caring for, reach out to someone who is a caregiver and find ways to support them!
Love you lupies!
Let me know what you do for self care in the comments!