15 Questions - Dealing with Stress of Being a Parent with Lupus

(December 2011) A parent with lupus adds challenges to the already heavy demands of being a parent. Small adjustments to your lifestyle can help minimize disruptions in your children’s daily schedule and activities. You will be able to devote more quality time to your children when you receive more rest and reduce stress. This month, Jana Eshaghian responded to questions regarding ways to address the stress of being a parent with lupus.

Dear readers,

Thank you very much for submitting your questions. The answers I’ve written are not entirely my own; I’ve gathered advice and inspiration from many amazing women and men over the course of a lifetime.

As a busy parent with lupus, I find that planning ahead, forming alliances, education, communication, managing expectations and creating a support system are essential ingredients to managing daily life. To me, having lupus is like having another child that needs constant care and attention.

Just like on an airplane, when the flight attendant instructs the passenger to place the oxygen mask over their own face first, before assisting others, it’s important to me to try to take care of myself so that I can care for others. Limiting stress and sun exposure, resting when possible, eating well and exercising are actions that I can take to help myself.

Wishing you all peace and good health in the New Year!

Jana


1. How do you explain to your children (mine range in age of 5 - 10) when you just cannot do things and they really want you to and they just don't seem to understand?  Jennings, LA

A couple of tactics work for me. One is to use a "verbal visual." If I can't participate in an activity because I'm tired, for example, I might compare myself to a toy with a low battery. Understanding lupus is hard for me—and, I have lupus! I can only imagine how difficult it must be for our children. I try to phrase my situation in terms they can understand best, and most all children have toys with batteries.

Another tactic that has worked well for me is using the "if . . . then" approach. "If I rest now, then I'll be able to play/go to the mall/go to the park/drive downtown, etc. with you later." It's important to follow through with the "later" or I lose credibility and the tactic is worthless.

If the activity is something I am physically incapable of doing, like roller blading or snow skiing, and our children have earned the privilege of a special activity by doing their homework or helping with house work, I make the effort to find someone else that can escort them to the activity.
 

2. I was diagnosed with SLE in May 2011. I have two children 7 and 5, sometimes they get angry with me when I can't play for long periods of time with them. Sometimes the smallest things they do make me angry, how can I play with them without them getting angry when I have to stop for a little while?  Buhler, KS

Upfront, I let my kids know if I'm up to participating in an activity, and how long I think my stamina will last. If they know in advance what to expect, it seems they get less angry or disappointed. I find that when I'm tired or if I feel pressured into an activity, my patience wears thin very quickly. I'd rather avoid the apology that will be necessary later by letting my children (spouse, friend, boss) know my limits prior to losing my cool.
 

3. I am a 36 year old mom of 2 girls, ages 4 and 7.  My oldest is very bright and I know she picks up on my symptoms, no matter how hard I try to hide them.  Is there a certain age that you recommend talking with them about lupus as a disease that I live with?  I do not want to worry or scare them, but don't want them to think I am hiding something from them.  Houston, TX

Children are very perceptive and can sense when something is being hidden from them. I didn't want our children to imagine a worse scenario than my actual situation, so I tried to explain lupus, and the way it affects me, in a way they could understand. Lupus affects my blood, among other things, so I created a character called the "hema-goblin," a little creature that eats the iron out of my blood cells. Without the iron in my blood, I told them, I get tired easily and can't do as many things as I would like to do. I made sure to tell them that lupus is not contagious, and that it is not their fault that I got sick. It’s such a relief, for everyone, when symptoms don't have to be hidden. My daughters, Sarah and Hannah, currently ages 18 and 16 respectively, agree.
 

4. Had SLE since age 28. Now 54, and grandmother of 4, I have difficulty keeping up with the grandkid's energy. Any suggestions?  Copperton, UT

Getting older naturally slows us down, and lupus compounds the fatigue. I've found that eating well and exercising regularly helps to boost my energy level, especially when I include fresh squeezed juices that are packed with vitamins and minerals. Lupus, environmental factors and the meds I take rob my body of essential nutrients. When I feel a sag in my energy, usually in the afternoon, I find carrot and apple juice perks me up fast. I use a juicier to create my own concoctions, but there are many fresh squeezed juices that can be found in the refrigerator section of the grocery store. If I'm experiencing inflammation, watermelon and cucumber seem to help. These foods have natural components that help with swelling.

I find that certain foods help to increase my energy level, such as a meal that includes salmon, brown rice and steamed vegetables. Red meat and pasta seem to slow me down, as do white potatoes, fried foods and white sugar.

Swimming is my exercise of choice because it's the easiest on my joints and I really enjoy it. Dr. David Silver, my wonderful rheumatologist, wrote and published an inspiring book called "Playing through Arthritis," in which he discusses the importance and benefits of exercise for the joints. Laps in the pool are boring to me, so I tread water and work out with water weights. In the water, I can manage cardio, weights and stretching without compromising my joints. Winter makes swimming impractical, so I opt for gentle yoga stretches, isometric weight exercises and any form of dancing. As long as the exercises don't feel like "exercise," I'm more likely to stick with it. Our entire family, nieces and nephews included, have fun with "Just Dance" for Wii. It's perfect for every age and fitness level.
 

5. I am married with two sons and raising our two grandchildren.  I have Mixed Connective Tissue Disorder.  When I am having a lupus flare I have little (or no) patience.  What can I do not only to help me but also help my family cope with "grouchy" mommy? The stress makes everything so much worse.  Gladewater, TX

When I'm in a flare, I'm mad at the world. I explain to my family that I am not mad at them, and I try not to direct my anger their way. When my "grouchy mommy" comes out to play, it makes me feel better if my children and husband ask if they can help me in some way. For example, instead of nagging me to get out the door faster because we're running late for school, an event or appointment, and risking me snapping back at them, we’ve agreed that it’s more productive if my family asks what they can do to help get me out the door. I have to think about so many details when I go out, such as, do I have on sunscreen, do I have the meds I'll need, do I need to take a snack or water with me, do I have a hat, is my purse to heavy to carry where we're going, do I need to take a cane, etc. My family's interest in my well being disarms my "grouchy mommy" and their help is exactly what I need when in a flare. It's also empowering for my family when they can help me.
 

6. How do you deal with the guilt associated with the parenting changes due to fatigue, depression affects of the disease etc?  Schenectady, NY

Dealing with guilt and the associated depression is a multi-layered process for me. I remind myself that it's not my fault that I have this damn disease. I didn't ask for it and I didn't do anything to deserve it. Acceptance is also key for me. By accepting the limitations that lupus imposes, I learn how to manage the best I can. When I do the best I can to manage my symptoms, it's easier for me to let go of the guilt. For example, I know that when I push myself to work long hours, I will ultimately suffer the consequences physically. When I'm down, my family suffers. On the other hand, if I rest when possible, eat well and exercise, I will likely be able to take care of them. By taking care of myself, I'm able to take care of my family, and I can let go of the guilt.

When depression comes to visit, first I acknowledge that it sucks to have lupus and I have a brief pity party for myself. Then I try to remember all the things I have to be thankful for, both big and small. I also think about how many people in the world are suffering in worse circumstances than mine. This usually helps me to replace depression with gratitude and humility.
 

7. How can a parent with lupus help your child's coach understand and be willing to work with us instead of removing the child off of the team due to an occasional absence or lateness?  Warwick, NY

It sounds like the coach needs to be educated about lupus. Dr. Patricia Eshaghian, Assistant Clinical Professor of Critical Care and Pulmonology at UCLA, and, also, my sister-in-law, explains it this way to her patients: "When someone has a broken arm, it's visible and obvious that the person is in pain. But, with lupus, the patient looks fine and no one knows that anything is wrong. The patient doesn't look sick." Perhaps if the coach has a better understanding of our disease he/she will be more tolerant about an occasional absence or lateness.
 

8. I have been recently diagnosed with SLE.  My two adult sons think nothing is wrong with me because I enjoy playing so much with our granddaughter.  How can I make them see that this is real?   Lexington, NC

Education about our disease seems to help my family understand that what I experience is real. I leave out articles from "Lupus Now" magazine and ask them to read paragraphs that highlight issues of this disease that I face daily. In the Fall 2011 issue, a phrase really resonated with me and I shared it with my family. Jenny Palter begins her article entitled, School Rules How 504 Plans and IEPs Can Help Children With Lupus Succeed in School with this sentence that seems to sum up my life: “We always say that having lupus is full of uncertainties—symptoms that come and go, unknown factors that trigger flares, not knowing how you’ll feel from one day to the next.”
 

Also, I ask my family members to Google lupus and the medications that I take so that they can begin to recognize symptoms and side effects. The more they know about my disease, the easier it is for them to see what's happening to my body.
 

9. I work a full time job during the day and in the evening, when I am with my kids is the time I have the most fatigue.  What can I do to feel at least able to be awake enough/have enough energy to parent them?  Bethlehem, PA

The evenings are the hardest part of the day for me, too. I try to plan dinner options that I can prepare ahead and that do double duty as part of a packed lunch for the next day. This frees me up to be able to participate in the parenting aspects of the evening, such as going over homework and talking about what happened in school. When it's time for dishes, our daughters bring out their IPod and we dance around in the kitchen while clearing the table and cleaning the dishes. We bond through their current music selections and this activity never fails to perk me up enough to get to the end of the evening.

Many years ago, our first Mommy-and-Me teacher gave me a piece of advice—at that bewitching hour of the day, around 4:00-5:00 p.m., don't let yourself get hungry. As I mentioned in #4, fresh juices really give me quick energy, even more than caffeine. I also have some nuts or popcorn as a snack.

10. I try so hard to be the strong influence in the home that I end up crying in front of the children and even worse get over sensitive to them not listening when asked to do something. I feel as if I am dealing with so much mentally and physically and I am not sure how I can keep my emotions intact so I don't affect my children. I don't want them worrying but they do, because I no longer can do it all and require help. Having a difficult time keeping my emotions strong not getting upset crying or even yelling. Feel ashamed. I want to be the rock I have always been. They are my world. Any suggestions?  Monmouth, OR

When I have an internal conflict, my emotions always trump reason or intellect. I cry unexpectedly, and in front of others, and generally feel out of control of my life. I, also, wanted to continue to be the dependable "rock" that I'd always been for my family. Change is hard, but eventually, I accepted that I have a disease that poses limits for me. Eventually, I realized that just because I have limitations and require help doesn't mean that my strong influence is any less. One of the hardest things for me to learn has been how to ask for, and accept, help. Having our disease requires a team effort to be able to manage a home and family. My family is empowered by being allowed to help me and this decreases their worry. When my children and husband are involved, their help also diminishes my mental and physical struggle.

I've explained to Sarah and Hannah, in detail, that asking only once for a task to be completed helps to save my energy. I don't have to repeat myself, and I don't get angry. Our children don't want to get yelled at or lectured any more than I want to expend the energy yelling or lecturing. This new way of living takes some practice, but the outcome is well worth the effort.

I learn, more and more everyday, how to love the person I am—disease, and all. As I love and accept myself with the limitations I now have, the inner turmoil quiets down and my emotions are not so out of control.
 

11. It is very hard when I am experiencing symptoms associated with my Lupus (SLE), to balance caring for my husband and kids. Is there any advice you could give me and other parents with Lupus on balancing the two and not further complicate things?  Powder Springs, GA

Caring for a husband, family and home is an under-rated occupation. It takes lots of planning and preparation to support a family, especially with the limits imposed by lupus. I utilize my computer as much as possible, ordering groceries and household necessities online and preventing physical wear and tear on my body. When possible, I like to have heavy items, like bleach, laundry soap and cases of water delivered.

Sometimes, particularly if I'm feeling a little under the weather, I'll start dinner prep in the morning because I know that by the end of the day I'll be toast. Small kitchen appliances make my life easier, giving me more time and energy to spend on family. The slow cooker is my friend because I can toss in all the ingredients to a delicious, balanced meal at once and let it cook all day. The rice cooker is invaluable and, as a holiday gift, my mother-in-law has given me a soup maker that I look forward to using. When I'm up to it, I make enough of a meal to freeze in anticipation of those instances when I need a short cut.

Involving my husband, mother-in-law, and children with shopping and errands make the days run more smoothly when the effects of lupus have me home bound.
 

12. I have a teens, preteens and adult children. It’s hard for me to get them to understand the importance of them helping with the chores because I can't cook or clean anymore.  Buckley, MI

As developing individuals, I think it is imperative for children to not only learn how, but to perform household duties. Skipping out on clearing the table or taking out the trash is not an option for Sarah or Hannah, not only because of my physical limitations, but also because these are responsibilities of living in a home. As a parent, I feel like I'm preparing our children for taking care of their own home one day.

That being said, we do allow for compromise. Our children's rooms are their own domain, and I allow them to have their space as cluttered or messy as they like. (My hope is that they will eventually decide to keep a tidy area.) In shared spaces, however, like the kitchen and living room, they're expected to pitch in to help keep our home clean.

As much as I enjoy a perfectly neat, clean and uncluttered home, it is rarely fully attained. There always seems to be one corner of stacked up books, photographs and DVDs. But, if I have an area, like the dining room or living room, where clutter is not allowed—by anyone, including myself—I look at the space and feel peaceful.
 

13. How do I organize myself so that the mornings are not so stressful trying to get my kids ready for school?  It is so hard especially when I was not able to get a restful night’s sleep myself.  Mission, KS

Mornings used to be the most stressful part of my day. Looking for a lost shoe, finishing spelling homework or arguing over what to wear is too much for me to handle, especially if I'm starting my day with a sleep deficit or joint pain.

Finally, I realized that by doing as much as possible the night before, the mornings run more smoothly and harmoniously. Clothes are laid out, cereal bowls are on the table, coffee is set up, backpacks are ready and lunches are packed—before we go to bed. This way, no matter how I'm feeling upon rising, I can manage our morning routine. Our entire family appreciates this organization because our days begin peacefully.
 

14. How do I explain to my child’s teacher about my lupus when there are times that I may be late getting her to school or unable to help her complete a homework assignment.  I feel like my daughter is sometimes being punished because of my lupus.  Arlington, VA

Education about lupus is vital for teachers and school administrators. Most everyone has heard of lupus, but not many people actually know how it affects the individual. In my experience with school personnel, they've been more than willing to try to understand the disease and how it affects the entire family. Once the teachers understand the nature of the disease, they can be very helpful.
 

15. My family has always enjoyed travel and adventure vacations.  How can I create a new normal for myself and my family to allow us to enjoy our vacations and time together when I am so fatigued and have difficulty keeping up with them due to pain?  I do not want them to stop the adventures because of me!  Dallas, TX

Our family loves travel, also, and we've managed some pretty awesome trips by tailor-making the itinerary. I may not be able to do everything my husband and children do, but I've learned to accept the sting that comes with staying behind on some activities by focusing on the positive and being grateful to be on a trip at all. Usually, I opt for a rest day on the first or second day after arrival, and I indulge myself in something fun and relaxing like a massage or a good book while the rest of my family visits an extensive museum or goes zip lining.

I always try to pack a day, or so, in advance. If I happen to be feeling particularly bad at the time of travel, I have a mobility device that I love because it has opened up new horizons. When I first started using it, I was embarrassed, and so were my family members, because it draws a lot of attention. Slowly, we realized that because of the device, we were able to be a family on the go. My husband gave me a Harley Davidson key ring for the scooter, which made me feel cool, and I learned how to maneuver it at high speeds—laughing all the way. I've even used it during the Lupus Foundation of America's Advocacy Day in Washington, D.C. Our Senator's and Congressman's offices were more than happy to accommodate the device.

Watching sun exposure is especially important for me on vacations. 

Road trips are fantastic because of their flexibility and low stress level.

16. I have a 3 year old, a three month old, and a husband with a crazy work schedule so it ends up just being me and the kids a lot. It is so hard to handle sometimes, more often than not in fact, but I refuse to be a prisoner of my lupus. I have to fight it off every day, but I would love to have some tips on how manage my fatigue and stress levels. I want to be the best mom and wife I can be.  

Kudos to you for wanting to be the best mom and wife you can be. It's challenging with lupus. My mother-in-law, who was once a mother of three boys under the age of three and a half, gave me a piece of advice when our daughter's were born, "Nap when your babies nap." As tempting as it is to get things done while the children nap, I learned the hard way that it is more important to rest my body than to unload the dishwasher.

My husband also traveled when our girls were young. Creating a support system is essential. Trading play dates with another mom can free up time to grocery shop. Most high schools require community service. Having a junior or senior come to your home to play with your children for an hour, or so, per week will help the high schooler meet their community service requirement and free up enough time to make dinner or do laundry.

Planning quiet time activities for children that don't require adult interaction can be a great tool to bring out when lupus fatigue sets in. Play dough, coloring books and crayons, watercolors, and a sand box can all be useful tactics to conserve your energy. This also helps your child to learn how to self direct.

With so much demand on the attention of a mother with young children—health being of the utmost importance—I found it key to let my spouse know how much I love and appreciate him. I used to think that he needed to rest when he came home from work. However, engaging his help with our children has proven to be a strong bond builder for all of us. We see this now, particularly since our girl's are in their late teens. Having your partner's help cuts down on stress levels.