Despite my chronic illness, some days I feel like a rock star. No brain fog, no body pain, no fever. It’s these rare days that often trick me into thinking I am invincible and can do just about anything. I have a habit, though, of wearing myself out in the moments I feel good. I usually have seven loads of laundry by then and I am in desperate need to go grocery shopping. Unfortunately, in most cases, I barely can get downstairs to feed myself by the next day.
I hear similar stories from men and women I meet who also are living with lupus. We do so much to play catch-up on the good days, that we often burn the candle at both ends. Then, on the tough days, even completing simple activities of daily living can be a challenge. If only a magical genie came along with our bottles of steroids and Plaquenil … (I’d ask him to make me lunch and pick up my medicine at the pharmacy).
While my difficult days can be frustrating, they have taught me some tips and tricks that can make life a little easier. If you or someone you love is newly diagnosed, I hope some of these life hacks can help lighten the load in those trying moments:
1. Shower chairs are your friend: During moderate-to-severe flares, I often opt for baths over showers. Just standing for a long period will wear me out, while a bath helps me conserve some energy. If you don’t have a bathtub option, buy a simple shower chair. Will it feel strange at first? It might. But will you grow to love it, and enjoy all the energy you are conserving? Absolutely.
2. Block everything out at bedtime: I’m a beast when I do not get a solid night of sleep. So, in order not to irritate my family and random strangers, I purchase earplugs at Home Depot or Lowe’s that are made for construction workers. No joke. Fatigue is honestly one of the worst daily symptoms I endure, so I protect my bedtime routine. Part of it also involves wearing an eye-mask (or two) to bed each night. Dark, silent … winning!
3. Keep cool outside: Some men and women with lupus deal with photosensitivity and heat issues. Personally, I overheat quickly and don’t do well when in direct sunlight. (It’s one of the main reasons I moved from Fort Lauderdale to the border of Canada).
My husband and I still love to be outdoors, so I invested in a Micro USB fan that is small, portable and plugs into your cell phone. In addition, I will soak a small micro-fiber towel in cold water, wring it out, and place it on the back of my neck/shoulders if we are walking around town. Mini icepacks are great, too, and several of my friends will slide them in their pant pockets for extra cooling.
4. Take advantage of Instacart: One of the most helpful things for me recently is the Instacart website and app that allows you to choose groceries from your local grocer (if available) and have them delivered to your doorstep. There may be a slight delivery charge, but it is worth a few dollars to save all the energy I would spend getting dressed and going grocery shopping.
5. Ease your food preparation: Investing in a crockpot and learning how to batch cook has helped tremendously. My crockpot allows me to make large, nutritious meals that I can separate and freeze in individual portions; turkey chili, soups and stews are some of my favorites.
6. Learn to say “No”: One of the biggest life hacks I can share with other spoonies is becoming comfortable with saying “No.” For a long time I felt guilty if I didn’t go to an event, make a dish for a get-together, etc. Being able to decline has helped me conserve energy, reduce mental stress and anxiety about whether I could complete the task, and it freed up a lot of my time. I now use all that time relaxing and taking care of myself.
7. Show grace and compassion: This one is all for you. Over the years, I’ve learned to show myself grace and compassion, and acknowledge all of the things I am (slowly) achieving. I stopped beating myself up for not getting it all done in a day, or taking a day off. And I’m a lot happier for it. Our body is fighting a battle, and we need to be okay with telling ourselves, “I did a great job today. And tomorrow is a new day to try again.”
I’d love to hear some of your life hacks! Please leave them in the comments below.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.