Living with Lupus and Twins: Efficient Self-Care with Chronic Illness

Last updated on September 28th, 2021 at 01:37 pm

I was diagnosed with Lupus the day before my 28th birthday. I spent the next year on a path of wellness self-discovery. I felt like I was awfully young to plan to use medications for the rest of my life, so I spent a lot of time and energy learning about total wellness and making life changes to feel the healthiest I could. By age thirty, I had wellness and self-care figured out and could pretty much do it in my sleep. Even once I became pregnant, I had to tweak some things, but self-care was still mostly effortless. When I brought my twins home, that all changed. It’s probably not a surprise to any of you that having the twins at home really limited my time to address my own wellness. Then not addressing my own wellness came with its own set of problems.

After having my twins, I had to re-explore wellness, this time with a focus on efficiency. This is an ongoing journey, but I’m going to share what I’ve learned so far. One of my favorite quotes is, “you can’t pour from an empty cup.” This means that you can’t sustain care for others if you’re not taking care of yourself. I remind myself of this quote each time I brush off my own self-care.

Living with Lupus and Twins: Efficient Self-Care with Chronic Illness

Don’t Forget the Basics: eat, drink water, exercise, sleep

It can be so easy to neglect these basics when your little ones need to eat, and the laundry needs to be done, and bills need to be paid. But let’s review why these things are so important.

Our bodies need food and water to function. Remember that food is your fuel. Hungry people often struggle with concentration, decision making, and irritability. Is that the person you want to be around your children? And depending on your illness, it can also exacerbate your symptoms. That doesn’t model good self-care for your children either and could be shortening your lifespan. Eating can also be daunting if you are on a special diet or have dietary restrictions, but sticking to your diet is also critical.
We know how important drinking water is, so why is it so easy to forget? Did you know that dehydration can affect mood, decision making, memory, and your motor skills?
Exercise isn’t just about looking good in your favorite jeans. Exercise builds strong muscles including your heart and lungs. A healthy heart and lungs are important when managing any chronic illness as it generally helps with symptom reduction.
There may not seem like there are enough hours in the day for sleep. But sleep is essential to keeping all of your systems functional and it will help you remember to eat, drink water, and exercise too.

So it’s great to know why we should be doing these things, but how do you fit them in? The routines you’ve had in the past just might not cut it anymore and you are going to have to be more intentional.

The first thing you can do is plan. Know what your week is going to look like so you can adjust priorities to make sure you still have time for exercise and sleep. Also, if you plan a daily routine, it will make things like eating and drinking easier. If your kids have lunch every day at noon, force yourself to sit down and eat with them, and have a full glass of water. Making it routine will make it that much easier and one less thing to think about. Finally, get creative. Working exercise into playtime can be a great time to exercise while not sacrificing time with the family. Or create a water drinking challenge.

You can find lots of great easy recipes, exercises with your kids, and health challenges on websites like Pinterest. And there are several good apps to help encourage healthy sleep such as Sleep Bot. Many of these apps are free!

Don’t Neglect the Medical Piece: medical appointments and taking your medications

When I brought my twins home, they had multiple medical appointments a week. It would be easy for me to neglect or put off my own medical appointments. However, having small children at home is a high-stress job. It was important to let others look after me during this high-stress time. The same goes for anyone else with chronic illness. If you have short appointments, such as labs, tack them on to your children’s appointments so you only have to make one trip. For check-ups, that is the time to reach out to your support systems. Also, be aware of your provider’s hours, and if they have night or weekend hours, take advantage of them. For little things that pop up, take advantage of the many electronic ways to get care these days including messaging your care team and e-scheduling appointments.

Most people understand the importance of taking your meds but remembering can be hard when you have little ones. There are all kinds of tools out there to help you remember to take medications, so try them until you find something that works for you. Pill boxes, putting an alarm on your phone, or taking your meds when your kids take theirs are a few ideas. The act of taking your medication does not usually take long, so there is no excuse for not doing it.

Managing Stress: relaxation and personal relationships

There are tons of great things one can do to manage stress. Many of the things I did before kids were time-consuming. When you have twin babies at home, you can’t run out to a pick-up game of volleyball or steal away for a mini vacation on a whim. Getting a regular massage or manicure is expensive. Spending time and money on stress management is hard to prioritize, but choosing not to can have all kinds of negative effects on our spiritual and occupational wellness along with our relationships and, of course, our physical health.

Luckily, these days the internet has all kinds of resources that we can access in mere seconds. And many resources recognize that people on the go may not have time to go get a massage or go on vacation, yet stress management is still important. There is a mountain of resources out there for mindfulness and relaxation techniques and skills that you can do in less than 5 minutes. YouTube is an excellent place to start your mindfulness and relaxation search. Also, check out the Headspace app.

Finally, reaching out to your support system is a great way to manage stress. Asking for help with watching your little ones or talking to other parents of multiples about the particular stress of having multiples is a great way to release some stress. (Twiniversity has a mentor program if you need someone to talk to who gets it!) Finally, taking the time to maintain a healthy relationship and open dialogue with your partner can also help keep you balanced.

Having twins isn’t simple, but your self-care can be. Do what you can with what you have, where you are; because everything you do counts. Taking care of yourself is taking care of your kids; so it is vital you prioritize it more often. As you do so, it will become easier. Good luck mama!

Maya Mason lives in the Twin Cities, MN and works as a Juvenile Probation Officer. Maya is the mom of 6-month-old boy/girl twins named Theo and Teia who were born at 24 weeks. Maya has Lupus and this diagnosis has led her to become passionate about natural health and wellness. Maya loves to spend time with her family, play volleyball and travel. She also is an avid writer and is in the process of writing a teen fiction series.