The Holiday Season is both an exciting time and a stressful time for most everyone! Holidays can be joyful and allow us the opportunity to reconnect with family and friends as well as celebrate as we prepare for the New Year. On the other hand, the holiday season often brings added physical and emotional demands.
When MS is in the picture, there are unique stressors and demands that have the potential to impact our positive holiday experience. The goal of this article is to offer information specific to the holiday experience when MS is part of it. There are many opportunities to identify potential stressors ahead of time and prepare so that the holidays are positive for you and those close to you.
Preparing for the increased demands of the holiday season begins with strategic planning. Being prepared by planning ahead is a major way to help you move through the season safely. By doing this preplanning, you may find that the holidays are not as overwhelming and you may even increase your anticipation and enjoyment of any scheduled events.
Be realistic with time commitments when setting up plans for the holidays. There are often many activities available for gatherings, parties, travel, shopping, etc. that come with the season. Take time to sit down with a calendar and schedule the proposed activities including the time requirements involved with them. You may find that you have set yourself up for 6 days in a row that have 14+ hours of scheduled activities in each day! If your schedule looks overloaded, take time now to choose the major activities you want to participate in and replace the less essential or less desired activities with rest periods (and even naps!). Flexibility in scheduling is the key here to make sure you are able to attend the priority events and will allow you to feel more in control and enjoy your preferred holiday activities.
Schedule at least 8 hours of sleep each night and consider leaving flexible open times to rest and relax in case you begin to experience worsening levels of fatigue or other symptoms. Having this scheduled free time is a must! We all need time to recharge and a getting restful sleep and relaxing free time is a great way to recharge.
* Special tip – I experience fatigue and sometimes run out of energy. My best friend offered me this analogy and I use it often. Consider that you have one dollar ($1) in energy per day. Plan on how you want to spend the dollar each day realizing that once you’ve spent the entire dollar, you are out of money (energy). You can schedule activities and move things around during the day and the week to avoid using up that dollar too quickly. Adding to that, if you schedule recharge times (e.g. naps and rest periods) you can add time to the original dollar! Now, I look forward to my rest times and naps with anticipation to see how much I can build on or replenish on that dollar.
Making the choice to say No thank you is important to avoid overloading your schedule or interrupting your planned rest times. Whether you have MS or not, overdoing during the holidays can be incredibly fatiguing. Everyone requires time to recharge in order to keep up with life sometimes.
Traveling with MS can also bring on stress and fatigue during the holidays. Take measures to reduce the impact of travel through strategic scheduling (as noted above). Before your trip, create a checklist of essential items needed for traveling with MS such as medications, assistive devices, personal items and so on. It is also important for you to carry a brief written review of your basic health information to have on hand when you travel. This document would include listing all of your medical diagnoses, current medications and of names of primary physicians and emergency contacts. This is sort of a safety net that would be better to have and not need it, rather than to need it and not have it. Check ahead to make sure hotels, restaurants and public areas at the planed locations are accessible if that is needed. Consider the expected temperatures of the location you are traveling to and plan your wardrobe accordingly. Be sure to pack clothing to promote cooling or warming and include personal accessories as needed.
* Review the articles on Temperature Sensitivity in MS and Tips for Dealing with Temperature Sensitivity on this site for more information.
Medications should be left in original pharmacy containers and kept with you in a carry-on bag rather than placed in checked luggage when traveling by air. When medications are in original containers, airport security generally is not an issue and a special note from the physician is not required (even with syringes). With that said, if you are traveling out of the country, it is best to have the letter from your physician just in case their policies differ. If you carry syringes in a pouch or travel kit supplied by the drug manufacturer, be sure to cut the prescription label from the original box and place this with your syringes. Remember that many national chain pharmacies (CVS, Walgreens, etc.) may be able to assist with a refill should you run out during the trip. Laws and policies differ by states so do not count on the ability to obtain more medication but if you are in a bind, at lease ask.
Do not pack medications with checked luggage. Arriving at a distant location without your medications is a major stressor you will want to avoid! In addition, temperatures in luggage storage areas are often not controlled and can impact some of the medications used for MS, so it is always best to carry them with you at all times.
Maintain healthy choices during the season! The holidays are not meant as a free-for-all in terms of overindulgence and reducing healthy activities. Now is the time to increase your focus on the healthy habits you have established for improving your experience with MS. Use your calendar to schedule walks, trips to the gym or other activities to continue your quest for health and wellness. Plan your meals ahead of time to ensure you include your healthy choices along with those indulgences that may occur during special events. This way, the occasional indulgence is reserved as a special treat, rather than becoming weeks of poor eating, potential weight gain, risk of constipation and may produce stress on the body (and the MS).
Minimize alcohol intake. Although some consider alcohol as a way to take the edge off of the holiday stress or as a way to celebrate, it can create havoc, especially with MS in the picture. Alcohol may impact the actions or side effects of medications and may impact the symptoms of MS. A few of the common symptoms that may be experienced with alcohol intake include drowsiness, changes in balance or walking, increased fatigue and decreased cognition, changes in mood, and changes in bladder control. The list goes on depending on your specific MS symptoms. Alcohol is also known to worsen depression in those who already have this in their life. So keep this in mind and use good judgment!
Minimize the impact of the holidays on the budget. Adding financial stress to the mix can have long-term effects to your financial stability with MS. Unfortunately, unexpected changes and medical expenses can occur without warning and it is important to have an emergency fund available.
Shopping on-line may be a shopping alternative that can reduce the need to use your precious energy and gas or avoid parking expenses to travel to busy shopping centers to purchase gifts. An added benefit is to minimize exposure to temperature extremes.
Allow others to participate and help carry some of the load when needed. This practice has benefits for everyone! Many people who are close to someone with MS have a sincere desire to help to make your life better. Those who have the opportunity to help out often report experiencing joy when allowed to do so. When offered, consider accepting the help graciously and expressing your appreciation for the impact it will have. When needed, ask for help to make your experiences more positive. Sometimes asking for help is a major challenge for those living with MS. Just remember, accepting this help, can make a major difference in your ability to keep up, save a little energy and enjoy more activities. If the offer is from a special friend or family member, you may also experience the added joy of spending quality time with the person!
Although stress is not directly linked to the occurrence of an attack of MS, some people report worsening of their MS symptoms and sometimes experience a decrease in overall feelings of wellness during high stress times (such as is experienced with the holiday season).
Some of the symptoms associated with MS can put a damper on the enjoyment of the holidays. Knowing this and preparing can minimize the impact that MS or symptoms have. Any of the MS symptoms can become more pronounced with added stress. Being aware of how your body is responding to the additional stressors is a key element in managing any changes. By being aware, you may be able to identify and discuss changes in symptoms with your MS Specialist, or other health care provider, to help manage them if needed.
If you notice small-unexpected increases in symptoms or the onset of a new symptom, take a moment to identify the changes and rest or remove any potential stressor. For example, some people experience increased symptoms with temperature changes (heat or cold). If you are outside in a cold or hot environment and notice a change in symptoms, or a new symptom comes up, move to a more temperature neutral area and allow your body to return to a normal temperature. This simple step may reduce the symptoms over a short period of time (minutes to hours).
Fatigue is a common symptom experienced by people living with MS. The level of fatigue and the impact on your life may be minimal or in some cases, more intense. When the added demands of the holiday season are upon someone with underlying fatigue, people may experience higher levels of fatigue than is normal. Changes in cognition, moodiness and generalized muscle weakness can also be impacted when fatigue levels are high. It is sort of like the saying that “my get up and go got up and left!” Monitor for this and take a break to rest if you begin to experience higher levels of these symptoms. Again, identify any changes in symptoms, stop the activity if possible and rest (take a nap if needed) to see if the symptoms return to a normal level.
*If symptoms continue to worsen and/or persist for over 24 hours, it is time to notify your MS Specialist.
Emotional Changes and Depression during the holiday season is higher for many people with or without MS in the picture. For people with a diagnosis of depression, anxiety or other mental health challenges, the holiday season can potentially increase the symptoms. Talk with your health care provider about this and seek assistance should you experience increasing levels of depression, anxiety or other emotional changes. Keep in mind that the scheduling of activities, rest periods combined with physical activity and good sleep hygiene can positively impact this challenge as well.
* The Anxiety and Depression Association of America has many tips related to this topic on their website. Take time to review the site if these challenges are impacting your life.
For those who experience bladder or bowel challenges, just going out shopping or to a social event can produce high levels of anxiety with the worry of having an embarrassing accident. Take time to plan ahead and prepare. Make sure to drink plenty of plain water throughout the day (nothing added) and reduce the intake of caffeine, alcohol or other beverages that may increase bladder irritation. Remember that dehydration can increase the bladder issues so stay well hydrated!
Tips for offering gifts to someone with MS
Over the years, I have received questions from family members and friends about offering gifts to those with MS. Although there is not scientific evidence behind these gift-giving tips, the following based on years of talking with many people living with MS and those who are part of their lives. A few examples are included below to offer ideas to those who desire to offer gifts specific to MS.
Each person and each family impacted by MS is unique in their response to the diagnosis of MS, the symptoms being experienced and to sharing personal information about the MS publically. It is important to consider this when entering their world and offering gifts. Some people are very open and public with their information while others are very private and prefer to not share personal information outside of a close circle of family and friends. If you are unsure about their feelings, consider having discussions ahead of time or go with more neutral gifts.
Be creative and consider the needs and preferences of your special person or family, while being sensitive to their emotions and feelings about MS being part of life. Here are a few ideas to get you started.
Offer to take the person on and outing to shop for gifts, prepare for events, purchase a new holiday outfit or groceries for holiday meals. Consider taking the person on a special outing to take a break from the chaos and spend time with that special friend or loved one – YOU!
Holiday Fun Kit – some refer to this style of gift pack as a survival kit. Consider having a theme such as stress reduction, personal assistance, travel pack or holiday fun!
For example, if your theme is holiday stress reduction, you might include:
* favorite calming or holiday music
* aeromatherapy or candles (consider flamed or flameless)
* gift cards for spa treatment, massage, mani/pedi, etc.
* yoga cushion or mat or coupons for yoga classes
* personal coupons for helpful activities (house cleaning, babysitting, car washing,
transportation, snow shoveling, pet sitting, gift wrapping, etc.)
* thermos to keep hot/cold beverages available on outings
* dammit dolls are a popular items these days for when things go awry
* consider items from the Tips for Dealing with Temperature Sensitivity article on this site as you choose gifts
* Bonus idea – place the items in a small multi-sectioned travel bag (with wheels) that can also be used for medications and personal supplies when taking a trip!
Other gift ideas:
- If shopping for groceries or cooking regularly is a challenge faced, consider home delivery of prepared meals or groceries
- Since memory can be impacted by MS, a gift of memory enhancing items, such as puzzles, games, crosswords, may be a helpful and enjoyable gift
- Sometimes night vision can be impacted by MS, so decorative night lights for getting around at night may be a unique gift
- If the person uses a wheel chair for mobility, a new seat cushion or carrying pouch can be a great addition
- If the person is newly diagnosed, or would like to learn more on MS, finding books on topics related to MS may be an insightful gift
- A decorative journal to track their experiences/symptoms (see the Find Your Path article on this site for more information on journaling)
- Another thoughtful gift would be making a donation to a favorite MS organization (please consider Your MS Compass of course!)
- Some people with MS may need assistance with walking so consider a stylish fold up cane to have on hand (these can be carried in large purses or personal bags); or a creative decorated cane can be a fun gift that offers consideration for their needs
- There are many fund raisers for MS and committing to participate in one is a unique offer of support (caution: do not post personal information about the person you are sponsoring on social media sites without their permission)
SPECIAL NOTE: Use your best judgment and show sensitivity to the person (or family) as you are planning a special gift selection. Depending on where they are in the process of learning to live with and adjust to the diagnosis of MS, try to select gifts to show you care and want to help based on their specific needs. For example, if someone is new to MS and does not have many symptoms, their gifts will be very different than those gifts selected for a person who has a more intense experience with MS or may be experiencing more symptoms or disabilities.
As you can see, there are many opportunities to share the holidays and share gifts with individuals and families that have MS in their world. There are also on-line sites to search for even more gift ideas!
Make this holiday season a special time to let them know that you are there to support and love them along their path with MS!
National MS Society (accessed 2015). MS Symptoms: Learn to recognize and manage the possible symptoms of MS, which range from mild to severe. http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms#section-0
Durand, Marcella. MS & Stress. Inside MS Magazine; National MS Society (October – November, 2005), pages 16-20. www.nationalmssociety.org/insidems
Anxiety and Depression Association of America. Find Your Holiday Happiness: Manage Anxiety and Depression. www.adaa.org
Siegert RJ, Abernethy DA: Depression in multiple sclerosis: a review. J Neurol Neurosurg Psychiatry 2005, 76:469–475.
Orenstein, B. Reviewed by Marcellin, L. (MD, MPH). 8 Tips for Traveling with Multiple Sclerosis. (2012). Everyday Health
Your MS Compass website articles: Temperature Sensitivity in MS and Tips for Dealing with Temperature Sensitivity (December, 2015). www.yourmscompass.org