I love family traditions. They’re unique to each family, and they bond us to each other. Sometimes it isn’t until we’re older that we realize there are other ways to celebrate. It’s also not until we talk to each other that we realize traditions we love may not be universally liked.
Throughout my youth, Santa always included an orange in the toe of my Christmas stocking. As an adult, I feel like Continue reading
By Alene Brennan
Tis the season to be merry and bright… unless you’re living with multiple sclerosis and wanting to just crawl under the covers at the idea of the holiday commotion.
It seems like all the symptoms of MS can be amplified during the holiday season. Why? Because as much as it is a wonderful time of year, it inevitably increases stress.
For some people, it’s “good” stress – the additional social events with Continue reading
Oh the weather outside is frightful… But not as frightening as the fact that Christmas is just 48 days away (48!). If you are anything like me you will get your shopping done roughly 48 hours to 1 week before Christmas. I don’t know if it’s the worry of finding the right gift or the rush of mall insanity that makes last minute shopping a favorite past time. Or if it’s the fact that Amazon Prime same-day delivery has essentially Continue reading
We’re in the heart of the holiday season and while some individuals find themselves joyously celebrating, we also hear from clients who experience feelings of distress during this time of year. The holidays can elicit some very strong emotions and concerns for some, which makes it difficult because there’s an expectancy to be cheery and elated throughout the entire season even though it can be a time of challenge and pressure, too.
For those performing holiday tasks, making preparations, and attending gatherings, this can be a stressful and exhausting time and others may not always understand why. For those not celebrating, the holidays may represent a period to have to cope with and just push through. Perspectives and experiences can be very different during the holidays, and for those who may be having a difficult time, it’s important to know that you are not alone. You can find support, comfort, and understanding from others through My MSAA Community.
“This is a great place to touch base when you need a question answered, want to vent, or just need the company of somebody who understands.”
– Community Member
My MSAA Community is a free, online peer-to-peer forum for members to share their MS experiences. The community is a safe space that allows you to post a question and get answers from members of the forum, share your MS journey, connect with others, and contribute to ongoing conversations – all from your smartphone, tablet, or computer.
If you haven’t done so already, please check out My MSAA Community today!
The holiday season is in full swing, and as the year comes to a close, the hectic pace can be stressful. Running any kind of errand during the last few weeks of the year becomes an adventure as you see more people out and about trying to purchase gifts, visit family and friends, host family and friends, and purchase supplies for all of the holiday meals and get-togethers. Everyone has their own method for dealing with the holiday season pressures and stressors, and one strategy that might be helpful at this time of year is guided imagery.
Guided imagery is a deep state of relaxation achieved by specific breathing techniques and mental images that reduce stress and feelings of anxiety – think of it as a structured day dream. This process can help with different types of physical and emotional stress by helping the body relax as you are guided along by a recording. Some benefits of guided imagery can include:
Most guided imagery is practiced using a recording of someone coaching you on your breathing and a mental image designed to reduce your stress levels. By envisioning an ideal place of relaxation (like a cabin in the woods, or a beach) in this almost meditative state, your body starts to physically relax and react as if you are actually in that place.
The more you practice guided imagery, the easier it can become to find your happy place and relax in a stressful environment, giving you a sense of control over your stress and your body’s reaction to it!
Interested in learning more about guided imagery? Check out our cover story from the Winter/Spring 2008 edition of The Motivator, Imagine the Possibilities: An Introduction to Guided Imagery and Its Potential Benefits for Individuals with MS.
By Stacie Prada
There are reasons to stress all year long, but the added social events and holiday tasks in November and December consistently encourage us to overdo it. People expect things from us, and we put expectations on ourselves.
Sometimes – or a lot of times – “just” getting to work, paying bills, keeping house, caring for others, and maintaining some modicum of basic health is an overwhelming goal. Add the holiday season expectations, and those of us with MS can be vulnerable to increased symptoms.
I firmly believe that these suggestions are good for anyone, those in perfect health and those with chronic illnesses. It’s just that what may be optional for them is critical for us.
Establish the minimum: Decide what the absolute minimum is that you need to do to maintain your health and be happy this season. Not being able to do everything we want to do is a daily harsh reality with MS, but being strategic about how we spend our time and energy can help alleviate the discouragement.
For holiday tasks, be very clear on what is needed and what is preferred. Anything beyond what is necessary is a choice, not an obligation. Sometimes just a shift in thinking can change how I feel from resentment to joy. If I’m doing something expected and I’m coming from a place of resentment, I will suffer. When I’m gifting, I’ve decided this is something I’ve chosen to do and I’ll feel good doing it. When it’s appreciated, it’s only an added bonus.
Reduce the demands: Ask yourself the following:
When someone asks me to do something, I’ll ask them the questions above. I’ll ask myself: Would I enjoy it, and can I do it without overloading myself? If I’ll resent it, I better adjust my attitude or not do it.
Organize and plan ahead: Don’t expect to remember everything without any extra effort. I keep a list of holiday season tasks that I want to make sure I do each year. It includes things I’ve done in the past, mailing due dates for cards and packages, gifts given, gifts received, thank you notes sent, and events attended.
If possible, I’ll proactively schedule time off from work to do holiday tasks. Trying to accomplish them all during evenings and weekends often doesn’t allow enough rest for maintaining health.
Make room for joy: Connect with loved ones in person, or by phone, text or letter. For many years I’ve alternated between Christmas cards sent in December and New Year’s cards sent in January depending on how much I had to do that season. Some years I didn’t send cards at all.
Include time to recharge in ways you love that feed your soul. I love getting outside and moving my body. It’s important to not just set sights on getting through the holiday season. Experiencing joy along the way is crucial for my sanity, and I will not do without just because I have a chronic illness.
Adjust to changing plans: I’d forecasted the things I would do this holiday season to match a level that I thought could accommodate my MS fatigue. Then my career placed demands on me I hadn’t anticipated. Sure, I whined about the surprise demands before verbalizing that it’s my choice to participate. The truth is I want to do these events; it’s only the scheduling that frustrated me given it challenges me with fatigue. To adjust, I found time on the work schedule where I could come in late or take some time off to offset the longer days. I also talked to a couple people who scheduled the events and asked them to consider spacing them out if done again in the future.
Receive judgement with compassion: People will judge the choices you make. Understanding that we can no longer do everything we’ve always done is hard to take for those that know and love us. Sometimes it’s not about the task, it’s about them wishing our health will be okay. It’s hard for us, but it’s also hard for them to accept that we have a serious illness that affects every aspect of our lives. Other times due to the invisible symptoms we experience and successfully accommodate, they forget we have limitations. It’s up to us to share our limitations when they affect others. No one who cares about us really wants our health compromised because of them. Usually they don’t understand that the little things could be a tipping point for us that requires a long time to recover.
It takes a lot of effort to live well with a chronic illness among people that have much more natural energy. They haven’t been forced to face these issues, and they may not understand how little things for them can be big things for us. It’s our job to take care of ourselves while nurturing relationships and living a life we love.
*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/
By Lauren Kovacs
Being with family and relationships are like skating on thin ice. Caution and preparation for these are something we need to do, especially near the stress of the holidays. Using some information can help us skate safely onto the pond of socialization. Having MS requires more of everything.
Like anything, we cannot “wing-it.” We cannot fly by the seat of our pants. The biggest thing to remember is to stay calm. Know your limits. Our speed is slow or “No.”
This is where knowing where the thin spots are will help. I like to know people’s personalities ahead of time, if I can. Going to family events or parties may take some personality planning. I like to know who respects the limits of my MS. Know your audience, so to speak.
Know the thin spots and stay clear. Know what situations and who is safe. This will reduce stress. Pick events that keep stress and fatigue to a minimum.
Some people you may have to physically stay away from. Other situations or people you may have to emotionally stay away from. MS is tough enough without someone commenting how his or her sister-in-law’s cousin’s friend ate something and is fine.
Attending work related parties is part of PR for my husband’s job. I always use my chair. It cuts down on fatigue so, I can stay a bit longer. I am social, but in the evenings I am exhausted and the MS “misbehaves” more. My speech is garbled so, I mostly listen. Sounding drunk at a work party is not wise. I try and eat before I go too.
Eating is very difficult for me. I can more easily refuse food, if I am not famished too. For me, it makes the gluten gods happy. I can be polite and have one or two bite size hors d’oeuvres. I don’t like to wear food in public so, I stay away from that thin ice.
If you are going to an unfamiliar place, take note of bathroom locations the minute you get there. Wear easy off clothes. When I gotta go, I gotta go now. I find thigh-high tights are easier than regular tights or hose. They are a bit drafty, but it is better than dealing with hose when now means now.
Know your limits. Don’t over party because the recovery time is not worth it. Try to stick to any diet restrictions. I mostly eat gluten free, but I allow a cookie or something. Balance for me is key. With a bit a planning, I can have that delicious gluten filled cupcake and be social. Be mindful of your limits and needs. A straw is a must and I carry an extra one in my purse. Most of all, try to enjoy the season.
By Lisa Scroggins
People who have MS are like snowflakes: they have the same diagnosis, but each one will have a unique portfolio of signs and symptoms. It’s really a bizarre feature of MS, that despite similarities, the way symptoms appear can be drastically different. Many of the symptoms are invisible to others, yet have a profound effect on the person. Even so, most folks with MS understand pretty well the weird sensations and feelings of discomfiture that each one of us experiences.
Family members operate in a similar way, in that they all have their own relationship with each of the others. Some are closer than others, and some have little to talk about. While as a person with MS, you don’t get to choose your symptoms, you can choose the people with whom you surround yourself. Most of us know that drama and conflict are burdens on our nervous systems which we can ill afford. As demyelination strips us of some important “insulation,” we have to compensate for the less-than-ideal environment that we are left with. Emotions as well as signs and symptoms all emanate from our brains, and as MS uses a lot of our reserve, we have to rethink the best use of what we’ve got. This means that on a difficult day, when symptoms are aggravating, it’s not the ideal time to drag up an old argument.
Many of us cling to notions of what the “perfect” family looks like and even subconsciously try to recreate that at special times. It’s prudent to bear in mind that emotions are likely to be running high, just because of the sentimental character of beloved holidays. Combining that with any worsening of old symptoms or the entry of new ones has explosive potential. It’s very important to protect yourself from stormy interactions if at all possible!
What I’m really trying to say, is that if you have MS, you really must be selfish at times (like the holidays) of high stress. I use the word “selfish,” but truthfully, your selfishness will pay off for the people who are closest to you. If you’re able to refuse to engage in ancient dramas, to get upset about inane things like “who should do X,” and “why don’t you do Y?”, you will have gone a long way toward preserving the quality of this time for you, and for those closest to you. I wish you all a serene, sometimes exciting, and happy time, whichever holiday you are celebrating.
By Jerri Burtchell
When I was a kid I loved this time of year. Snow on the ground, great food (except for that weird Jell-O salad Aunt Mary always made), and presents at Christmas. Things have changed since I was diagnosed with multiple sclerosis (MS) in 1999. Now a sense of foreboding overcomes me each year, right after Halloween.
I’m not the “bah-humbug!” type, but I do hail from a long line of worriers. Maybe we were meant to be “warriors”, but some genetic mutation caused a typo. Now we fear things our imaginations dream up. The “what if” syndrome. My MS diagnosis has elevated my worrying to a whole new level.
Holiday time is prime “what if?” time for me. What if I can’t navigate the busy malls and grocery stores? What if the handicapped parking is all taken up? What if I don’t have enough money to give everyone gifts? What if this fatigue keeps me from enjoying the family I rarely get to see? And the biggest one: What if all this worrying stresses me out and I end up relapsing?
One Christmas, that changed when our family shared what other families keep secret. We all admitted that gift buying was stressing us out. Not only the act of shopping, but the dent it was putting in our pocketbooks. Our name isn’t Trump or even Kardashian. We don’t have money or personal shoppers. What a relief to know we all felt the same way!
So we started something new. When we gather at Thanksgiving now, part of our tradition is drawing names for Christmas gift exchange. We’ve instantly gone from buying gifts for ten to buying for one. Stress diminished. To take it a step further, we can only spend $20. Now the stress was melting like snow in the spring.
Christmas morning is no longer spent in a flurry of mindless paper shredding as we tear through one present after another. But the only ones disappointed are the cats with less cardboard boxes to explore. We still have the experience of gifts under the tree, but now it’s a single, more thoughtful, often handmade gift.
And we quit competing with Martha Stewart for the most elaborate side dishes and desserts. Not everything has to be perfect. We’re enjoying things on our terms, not those set forth in Better Homes and Gardens.
One Christmas I got a late start putting up the decorations. It seems MS fatigue brings out the natural procrastinator in me. So imagine my panic when I went to get the fake tree from the garage only to find it was now home to a family of mice.
I took a few deep breaths and channeled MacGyver. Before you know it, a big vase was the base for my silver, spray-painted Christmas “stick” – a dead branch I’d dragged in from the yard. With a string of lights and a few baubles here and there, the problem was solved. The best part is, it was cheap, handy, and I finally made use of an idea I’d pinned on Pinterest.com.
So in freeing myself from the stress that comes with striving for perfection, the reward I got was more quality time to spend with those I love–the only gift that counts.
Life passes too quickly and before you can say, “Black Friday,” it’s all over. I can safely say I won’t be lying on my deathbed lamenting over all the bargain basement prices I missed out on. It’s the people in my life and the connections we made that will be my fondest memories.
I won’t be stressing over the perfect gift for someone this Christmas, or if I forgot to put the marshmallows on top of the sweet potato casserole…again. I’m going to be counting my blessings in each smiling face that comes through the door.
So forget what the commercials all tell you to do. When you give yourself permission to lower your expectations of perfection, miracles happen. You have lots of laughs, give lots of hugs, and take lots of pictures. Aren’t those the memories you’ll treasure most in the end?
And that gem of wisdom is my holiday gift to you. (It was handmade and cost me less than twenty bucks – Enjoy!)
References: http://www.healthline.com/health-slideshow/pictures-multiple-sclerosis-psychological-changes
*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.