Q&A with Cindy Coney - Dealing with Holiday Stress

The holidays can be fun, but they can also be very stressful. Any type of stress on the body has been suspected to trigger a lupus flare. With the impending holiday season, it is important to give yourself time in order to prepare for the potential incoming stress. You can learn ways to manage and cope with stress to ensure that you enjoy the holiday season flare free. In this month’s Ask the Expert Q&A, Cindy Coney answered your questions about dealing with holiday stress with lupus.

Ask the Experts is a series of educational talks and presentations on a variety of topics designed to provide you with important information about living with lupus. To listen to and download the original presentation, and to see other topics, please visit www.lupus.org/ask.

1. My family does a lot of travelling. What can I do to make things smoother for myself and my kids during the holidays? St. Louis, MO

Traveling can definitely add a layer of stress, especially during the holidays. As for making it smoother, I would start your planning early. I believe it helps to start with a pretty extensive checklist of things that need to be done. One thing I find very helpful is to start a file folder for the trip as soon as I begin planning it. I staple my to-do list on the inside of the front cover of the file folder and place all travel documents in this file. It is so nice to be able to pick up that file on the way out the door and know that I have every ticket, map, phone number, etc. that I might need in one place. I’ve found it helpful to use brightly colored folders for this and always keep them in the same place in my desk drawer. I even toss in articles I might see in a magazine about the locations I’m headed to.

Now that you have an itemized list in a place you can find it, you can allocate your time and energy in manageable chunks each day. As we know, lupus can limit the amount of energy you might have daily, so breaking the tasks down is helpful. I think one of the hardest and most stressful things about traveling is trying to get everything done at the last minute. The more you can do in advance, the better you will feel and the less stress you will have when you travel.

2. Are there specific support groups or services that teach people how to combat stress?  Kokomo, IN

I have not seen support groups specifically to teach people how to combat stress. I have however seen it as a topic at other events. I have been invited many times to speak on stress at local support group meetings for patients with chronic illnesses, at hospitals offering education to patients and also at conferences where managing stress is one of the breakout sessions. I don’t know if you are aware, but the Lupus Foundation of America has a chapter in Indiana. You could contact them at www.lupusindiana.org and ask if they might be offering any sessions on stress management in the future.

To find out more information about your local chapter, visit lupus.org/chapters.

3. How can I stop the stress from taking over? I was laid off from work for four months. I have not been able to get my thoughts and feelings back on track. I do breathing exercises and listen to relaxing music to clear my mind but nothing is working. Can you please tell me how to get my stress back under control? Mesquite, TX

These are the times that I always wish I had a magic wand and could wave it and make all of your stress disappear! However, since I do not have a magic wand, there are a few things that I can recommend. It sounds like you are off to a good start with your breathing exercises and relaxing music. If you understand that stress is our bodies’ reaction to having more demands placed on it then we have resources to handle it, you know that there are two ways to reduce stress. One is to decrease the demands being placed on us and the other is to increase our resources. Your two techniques fall into the category of increasing your personal resources. Obviously, they are not enough to combat the demands you are experiencing. So, you can add other resources, such as exercise, eating right, talking to a friend who understands and getting a good night’s sleep. Also, taking steps towards finding another job might relieve some stress. Even if you cannot immediately find a job; making calls, getting your resume together, talking to people who might know of jobs that are available, combined with rest and good nutrition may be some steps that begin to move you in a positive direction.

I’m guessing that your mind might also be wandering into the future and playing the “what if” game. What if I don’t find another job? What if….. I can tell you this adds a great deal more stress to your situation. If you stay in the present, some of this stress might go away. When my mind wanders into the future and I become stressed, I say to myself, “Not helpful, Cindy.” I repeat it over and over and it helps me get back in the present moment.

I hope this helps get that stress under control!

4. We love to do outdoor activities during Christmas vacation. But, I get very achy in the cold; my doctor thinks I could have fibromyalgia.  What are some good exercises to do in the mornings/evenings to help me not feel in pain all night and day long? Detroit, MI

Well, I have to be honest and tell you that I live in Tampa, Florida; meaning I don’t spend a lot of time in the cold temperatures like you do. However, I can tell you that when it is cold here, or I am traveling to colder climates, I try to exercise outdoors at the warmest time of the day. My morning walk becomes an afternoon walk. I also find it very important (and you know this way better than I do!) to dress appropriately to stay warm. Being cold makes my joint pain worse. I begin each day with a warm bath to loosen up.

Having lived with lupus for over 30 years, I have learned to gauge how much exercise helps me and when too much makes my lupus worse. I think finding the perfect exercise routine is an individual process of trial and error. Just be careful not to overdo it or that pain may really increase.

Also, here is the link to an exercise video that the Lupus Foundation of America, North Carolina chapter sells. You might find this helpful.

5. During the holidays, my family schedules all meals and events at exact times. My lupus is very unpredictable and although I have had it for several years now, I feel that they still do not understand the difficulty I have with "planning" anything. Once I know the planned time of an event, I stress for days before that and then end up not making it on time or at all. If I am an hour late or come feeling noticeably sick, they never let me forget it. I have tried explaining my illness to them for years and I have asked them not to wait on me. I would greatly appreciate any tips you can give me so that I can be with my family & enjoy myself during the holidays AND not be stressed to the max. Paduca, KY

Even in the best of situations, family and the holidays can bring on added stress. People often have certain ways they like to do things that are not always compatible with those of other people like you. Compound this with the fact that you have lupus and your escalating stress levels are certainly understandable. However, that stress is not good for you, so I suggest the following: this year, BEFORE any events are planned, remind everyone that you love being with them, but find it difficult to make it to planned events due to your lupus. Tell them that you will do what you can to be there on time, but again, not to wait for you. It sounds like you have told them this before, but it doesn’t hurt to remind them. It also helps set appropriate expectations of you for your family. Make sure that you are assertive about this. Sometimes it is hard to tell other people things that you are afraid they may not want to hear, but you need to be firm on this.

Once this is done, you need to let it go and not focus on getting there on time or at all. I know, easier said than done! As I mentioned in question #3, I stop myself from focusing on unwanted things by saying to myself “Not Helpful” over and over again. Also, when you feel yourself beginning to get stressed, practice taking long, deep breaths. This sounds so simple, but can really help. Make sure that when you inhale your stomach goes out, so that you fill your lungs completely. Often, when we are stressed, we breathe shallowly and this adds to the stress.

Lastly, I find it helpful to distract myself from negative and stressful thinking by taking a walk. I find that nothing clears my head like moving around and getting some fresh air!

6. Every year I cook and prepare for my brother’s family and I think I may need some help this year? Are there any resources or organizations that help individuals with cooking and preparing for certain holidays? Raleigh, NC

I am not quite clear on what types of organizations you are looking for. I know that in our family I host many of our holiday dinners, but I am the first person to allow others to help. My husband and I always prepare the main course and then everyone brings his or her favorite side dish, dessert, salad or bread.  I love this because whatever is “traditional” in their family gets included. It works out great. Perhaps it is an option to ask people in your family to help you this year. I know this can be difficult if you have always done everything in the past, but it might be what you need this year.

Also, where I live, there are many restaurants that have takeout for the holidays and also many companies that cater, but this can get expensive. Sometimes, if you just want to pick up one or two things, this might be an option. I would imagine you have the same things available to you in your community.

7. Can family gatherings that require flying create stress that could cause body pains, such as, back or legs, making it impossible to walk stand or even breathe? This always happens to me when I see my family and I eventually end up in bed at the hotel! Help me to understand please? Daytona Beach, FL

I am not a doctor; so I do not know exactly what is happening to you. Like you, I have lupus. I can tell you that both travel and flying can be stressful and hard on the body. Sitting in one position for a long time can lead to sore joints and tight muscles. I know I feel much better and my joints hurt less when I’m able to move around. You can also read some of my responses to the other questions to see ways you might be able to reduce some of the stress of traveling.

I do want to say that I think this is something you should discuss with your doctor prior to flying, especially since you have difficulty walking and breathing.

8. I have a grandmother who had lupus, and still some immediate family members still have no understanding/empathy for my sometimes tiredness or pain. In addition, there are often arguments/tensions at family gatherings which cause me a lot of anxiety and stress. How do I diffuse this tension? And how do I explain to them that their arguments at family gatherings cause me stress? Cortland, NY

Lupus is such a difficult disease to understand. I know that I’ve had it for over 30 years and there are still times I have difficulty understanding what is going on! That said, however, I can tell you that some people are just not good at dealing with illness. I have seen it over and over again through the years. Some people seem to “get” what I’m going through and others do not. The fact that we often look well makes it even harder to understand.

One thing I have learned over the years is to only take action on things that I have control over. Generally, you do not have control over the way other’s respond to your tiredness and pain. The best thing to do in this situation is to let it go. Letting go of things we can’t control reduces a lot of stress.

Now, something you do have control over is choosing whether or not you attend the family gatherings, and if you go, how long you stay. If you find these events stressful and I can imagine that arguments would be stressful; I would limit my time at the event. Again, I don’t know that you can control other people’s arguing at family gatherings, or if you’re explaining that it causes you stress would help. You know the individuals better than I do, so you know if speaking to one of them might help. If you don’t believe it will, you might want to limit your time there by saying you’ll drop by for a few minutes, or not go at all. It sounds like it may be difficult for you to choose not to attend, but sometimes we must make these difficult choices in order to protect our health.

I encourage you to begin focusing only on the things you can control and place your energy there and work to let go of the things you can’t control. (I work on this all the time!)

9. I am newly diagnosed with lupus and I am wondering what to expect during the holidays. I usually cook the meals and plan activities for my family that comes to visit and I am afraid that I won’t be able to do this. Please let me know what I can expect? Tucson, AZ

As I’ve mentioned in other questions, the holidays bring additional responsibilities and sometimes stress, even to those who are healthy. Compound that with having limited energy and high expectations for yourself and you can see where this might become difficult for you.

Knowing that you now have a chronic illness, you want to be especially careful this year. I encourage you to start early with your holiday planning and chunk down the big jobs into smaller, more manageable tasks. Also, allow other people to help you. This is one of the most challenging things that many of us with chronic illness struggle with. We are used to doing everything ourselves and asking for and accepting the help of others is sometimes uncomfortable. I can tell you that it is worth letting other people help you and not feeling guilty about it. You feel better and have more fun and can enjoy the holidays.

Lastly, I would examine the traditions and things you have done in the past during the holidays and decide which ones are most important. This might be the year for you to establish new traditions that don’t require the same amount of energy as those you had in the past. The holidays are a beautiful season to enjoy friends and family and by taking it a bit easy, that is exactly what you should be able to do!

10. I host Thanksgiving every year and deal with Sjogren’s, lupus, and fibromyalgia on top of that. Every year my family comes to my house, but never helps out with preparing meals. How do I explain to them that I need them to help out and that I can’t keep doing this on my own? New York, NY

Please refer to my answer to question #6. In addition, what we are really talking about here and in many of the questions I’ve been asked is how do I communicate and explain my needs clearly to other people, especially family members.

This is always challenging, because we often feel guilty when we aren’t physically able to do the things we have done in the past. I love to use the analogy of flying on an airplane. The flight attendant always says, “If the oxygen masks should drop from the ceiling, put your own on first, because you are then better able to help those around you.” I have learned after my many years of living with lupus that my family would prefer to have me healthy and happy at Thanksgiving than exhausted and sick because I did everything myself. I’m guessing your family may feel the same way! Learning to let go of the way we have always done things after a diagnosis of lupus is challenging. We still want to be the same person that could do everything, but our bodies have limitations. Once we learn to accept these limitations and create personal boundaries in which we are able to stay healthy, we are healthier and happier and more fun to be around. I decided awhile ago that I owe to those I love to be the best Cindy I can be and this often means being honest with them about what I can and cannot do. I think you might be surprised when you have these discussions honestly and from a place of love with your family just how supportive they might be!

11. I get fatigued really easily and my kids always want me to go trick-or-treating with them and I just do not have the energy to go for as long as they want me to. I feel awful when they are upset. They don’t understand why “mommy gets so tired.” What can I do to ensure that I can enjoy this time with them without this awful fatigue? Billings, MT

My children are now grown, but I remember this dilemma very well! It is hard for children to understand why mommy gets tired, especially when they are young. I’ve found that the best thing to do is to set it up a bit differently from the beginning, so the expectation of you going long distances with them isn’t there. On Halloweens when I wasn’t feeling well, my husband or one of my neighbors took the children Trick or Treating and I stayed home and gave out candy to those who came to our house. Honestly, it wasn’t as important to my children who took them as that they were able to “go the distance.” You might find the same to be true for your children. You can also tell them from the beginning that you are only going to go the first block with them, and then head back home and let them finish with someone else. It is important that they get to go, so arranging for someone to walk with them is important.

You might also think of having a small gathering at your house prior to going Trick or Treating and then staying home and letting them go with someone else. This way, you get to have some fun with them first and they get to go their entire route. Just make sure it is something simple for you to do.

12. Our family has a lot of traditions that are important during the holidays. However, after my diagnosis I find it difficult to participate in all of these. What should I do? Portland, OR

One of the most important things you can do is sit down with your family and openly and honestly discuss the holiday traditions you’ve had in the past. Ask them to list the ones that are most important to them. Discuss why these are important. After this is complete, honestly share that due to the lupus you don’t have as much energy as you had in the past and you’d like to focus on the traditions and aspects of the traditions that are most valued by everyone. Together come up with a list of the traditions you’d like to hold onto or new ones you’d like to try in place of some of the older ones in the coming year. I’m guessing that there might be easier ways to do the things you’ve done in the past that family members truly value and some fun ways to add low-key new traditions to your holidays. The key is holding onto the aspects of the traditions that are valued; like time together. Roasting marshmallows around the fire might be just as much fun, if not more so than the multi-course dinner!

13. I have a hard time getting enough rest during the holidays. I think this makes it harder to deal with stress. Do you agree and what can I do about it? Tampa, FL

Getting enough rest during the holidays can be a challenge, yet I have found this to be the most important tool in dealing with holiday (honestly, everyday) stress. I find that if I am rested I am better able to handle the day-to-day challenges that might come along. In learning to live with lupus, getting enough rest is crucial. I have learned that I must prioritize rest over almost everything else. During the holidays, it is important to plan events, so that you can still get enough rest. This may mean coming home from a gathering a bit early and sometimes taking a nap. When you RSVP to an event, there is nothing wrong with saying you’d love to attend, but may need to leave a bit early.

You are probably going to laugh, but in my house on New Year’s Eve, we have been known to set the clock ahead to midnight, celebrate and then go to bed. I can tell you it makes for a much happier and healthier New Year’s Day!!!

14. I usually do my holiday shopping at a mall and I notice that I experience a lot of joint and muscle pain the next day along with awful fatigue. How can I prevent this or make myself feel better the following day? Princeton, NJ

I learned a long time ago that one of my best friends is online shopping. Many, many people ship at no charge, or do not charge tax if they are not in your state, so the prices are comparable. Also, I can go online and find adorable gifts that are unique for the people on my list without spending hours wandering the malls. I love ordering things that are monogrammed and personal and the recipients are tickled with the gifts. Almost all of the stores you would find at the mall have online options. Trust me; this is the biggest energy saver I’ve ever found!

Also, I carry a list of people I give gifts to with me all year and pick up things for them whenever I see them. I keep them in a closet and when Christmas rolls around, I get to avoid much of the holiday hassle and I have gifts they will love!

15. The holidays are a really lonely time for me since I am unable to travel due to my lupus. I would offer for my family to come to me, but I am afraid I will be overwhelmed with entertaining guests. Do you have any suggestions? Denver, CO

I would definitely invite your family to spend the holidays with you, because I think it is important that you have them around and do not feel lonely or depressed during the holidays. However, when you invite them you must tell them up front that you are inviting them so that you can spend time together, but you will not be able to “entertain” them. Setting realistic expectations for yourself and for your guests is important from the start. If they know it will be “low key” holiday, I feel certain they would be fine with that. Also, if they would like to do more, they can; you just need to be clear that your energy is limited, but family is very important to you.