What are you doing to cope?

Posted on May 12, 2017 by Ro Washington

If you can believe it, we are already in the month of May! 2017 has been steadily moving along and this month we are looking into the topic of coping. Everyone has their own versions and ideas about how they best cope with, and through, stressful or difficult situations. For years professionals have presented, written about, fine-tuned and zenned over the most positive ways that we can cope. While not every example will work best for every person it’s always great to have some ideas in your back pocket when the need arises. There is nothing wrong with testing a few out to see which ones do not work for you and which ones are your go-to when counting to 10 just does not cut it anymore. You can try:

Cooking or Baking
Scheduling some time off and stick to it
Spend some time with young children or animals (both tend to be care free and some of that may rub off on you during your time with them)
Create something artistic (this can be any number of mediums such as music, clay, paint, found objects, writing, photography and the like)
Visualization, Meditation. Group or Individual Therapy
Physical Activity (this too can be any number of things; swimming, dance, yoga, stretching, sex…yep, you read that right…a bike ride or walk)
Give of yourself to organizations you are interested in. Volunteering can not only help you, but also others
Explore something in your area that you haven’t before
Get some more sleep
Seek out speaking with friends or family and expressing your emotions

We all know that we have some negative coping mechanisms that may help for a short period of time in the moment but still leave us a bit in the lurch. Seeking out more positive ways in which to cope, these or others may help us to set up a more positive pattern to help deal with a negative situation. We’d like to hear some of your positive coping skills or ideas that you’d like to share. Take a moment to check out our thread on My MSAA Community.

Embracing Change

Posted on August 3, 2016 by MSAA

By Stacie Prada

In the last three years so much of my life has changed.

My beyond-two-decades-long marriage was ending while my career took a completely unexpected and welcome turn. I moved to a new place, and I had a few surgeries. Valued in-person friendships were no longer nearby, and they shifted to Facebook interactions. All of my daily routines I had in place no longer fit into my new life, and I spent a lot of time redesigning them. Often it felt like my entire life was tossed in the air and landed scattered on the ground. Picking up the pieces and deciding how to arrange them again took up a lot of my time and mental energy.

Any of these changes would have been big for me, but juggling them all at once took a lot of effort. MS was a factor in this because I strove to maintain my health throughout these changes. My biggest goal was to avoid an MS exacerbation, and, fortunately, I succeeded.

Experiencing change can alter how I view the world, myself, my past, my future, and the people around me. It’s a mental shift from what I thought I could count on to knowing how vulnerable and impermanent everything can be. The diagnosis of MS made me question my body’s abilities and health. I thought my body was strong and healthy. Being diagnosed led me to realize that a healthy and mobile future isn’t necessarily in my control. I can eat right, exercise, and get checkups, and still have no guarantee for good health or the ability to walk in my elder years.

Adjusting to change is a skill I’ve cultivated to save my sanity and bring myself mental peace. Some years ago, my New Year’s Resolution was to “Embrace the things that I resist.” It was a great experience acknowledging when I was resisting things and actively shedding the internal resistance I had to doing them. When I was nervous about running a public meeting, I decided to dive in and just do my best. When I liked a fashion choice that I thought might be too flashy, I decided to try it anyway. When the group sang karaoke, I got up in front of the group with my not-great singing voice and sang my heart out. I knew I might sound terrible or look silly, but I let myself have fun doing it.

My personal challenge that year allowed me to think about and recognize why I resisted things, and it helps to think about it when dealing with change. Most of the time my resistance stemmed from the following:

Uncertainty for what the next step was or how to decide
Being afraid that following that step would lead to an outcome I feared
Being overwhelmed from the quantity of things to deal with at that moment
Fear of making a mistake, making what I would later judge as a wrong decision, failing, or being judged negatively by others
Holding on to a belief that I have control over the future, others, or anything other than what I do, say or believe.

Coping with change:

With MS, a lot of change stems from the domino effect of losing mobility, cognition and physical abilities. Focusing on these losses can lead to depression and a sense of doom. When an exacerbation hits, it’s natural to worry about where it will lead and how it will affect the future. It’s all understandable and natural, but it’s also incredibly unsettling, frustrating and just plain hard. I try to embrace changes I’m resisting by doing the following:

Recognize that feeling unsettled, nervous or fearful is natural. Accept it will be stressful but try to do what I can to minimize the stress.
Think about why the change is stressful. Does it require changing my life, my relationships, or just my attitude?
Seek inspiration and motivation from people who have lived through a similar change. What insight can they lend?
Pace myself. Take on only a few extra tasks each week or month, and reduce some of the things that aren’t necessary for my physical or mental health. Know that my regular life still requires a lot of energy, and something needs to give temporarily.
Know the deadlines and what’s at risk if they aren’t met. Give myself enough time to do things, but not too much so that it feels never-ending.
Break down the steps to dealing with change into smaller doable tasks to avoid getting overwhelmed.
Prioritize based on importance, deadlines, and energy level. If my energy is low, I’ll do the easy tasks for now and the more involved tasks at a time of day when I have more energy. Certain things may also be able to wait months.
Wait to start until I’m ready to commit. I keep a list of things to do, but I don’t start until I’m ready to do them and complete them.
Set realistic expectations and ambitious dreams.
Look forward to something. Whether it’s seeing kids or grandkids grow up and being a part of their lives, traveling, dancing, watching the sun set, or anything else small or large that brings joy.
Enjoy the path I’m on even when portions of it are difficult. Give myself credit for all of the things I do that aren’t hard because I’ve put so much effort in the past into getting better at them.
Trust that I’ll do what I think is right for me each step of the way and that it’s enough.

Dealing with change has been a learned skill for me, and it’s taken a lot of effort to cultivate that skill. It’s been worth the effort to reduce my internal stress and increase my sense of contentment. Relaxing into and embracing change has improved my confidence, given me opportunities and experiences beyond my expectations, and made for a much more satisfied and joy-filled life.

*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/

Inside My Bubble, Prepared for Anything

Posted on September 26, 2014 by MSAA

By: Jeri Burtchell

I like to think of myself as a planner. Now, before those of you who know me collapse into uncontrollable laughter, let me explain. I don’t plan as in “wedding planner” or even use a “day planner.” In truth, I’m a perfect candidate for one of those intervention reality shows.

I never said I plan in a structured, well thought-out manner. No, I’m motivated by more of a panic-driven, deeply troubled, “what-if” thought process I learned from my mother. I have cultivated an emergency response for every possible scenario that could come along in life. I have prepared for catastrophic events that may or may not ever happen.

Mom and I have our fire season evacuation box, our hurricane season supply stash, and when I travel I have a whole suitcase packing ritual designed to make life easier in the event that things go wrong. When connections are missed or there are bathroom emergencies, I know I can count on the contents of my purse or roller bag to rescue me.

I like to think of this as part of my MS Bubble. Since I was diagnosed in 1999 and have come to realize how unpredictable it can be, one small thing that gives me solace is having my MS Bubble.

It’s a sort of invisible force field I’ve visualized that surrounds me. Inside I have everything I might need to deal with unpredictable events. Things that define my comfort or bring me joy are always close at hand.

Others might say my bubble is nothing more than my “comfort zone,” and in the classic sense, I guess it is. When I’m working, it’s right here at my desk. In my bubble/comfort zone, I keep the necessities of life. I have everything from a box of tissues to device charging cables.

While others look at my workstation and see a chaotic mess, I see a symphony of bubble-friendly instruments, each playing a part in bringing me comfort. I choose to forgo the aesthetic appeal of minimalism. I’d rather have clutter, as long as it’s purposeful clutter. Who can say I won’t need that thermometer mere inches from my keyboard?

My sweater stays on the back of my chair, always at hand in case I get chilled. Slippers are close by.

My smartphone is the most indispensable tool in my bubble. It connects me socially, delivers my mail, reminds me to take medications, tells me what the weather is like outside, and will distract me with games if I let it.

The point is, I have made my life as comfortable as I can, given the unpredictability of MS (and of life itself!). Although my bubble does not appear to be in any semblance of order to the untrained eye, it works for me.

I haven’t “planned” my bubble this way as in planning-a la-Martha-Stewart. It is only an ever-evolving collection of habits and things that aid me in everyday life. So I am soothed by the knowledge that, even when my MS symptoms are acting up, my MS bubble is always there, ready to comfort me.

Perhaps it’s eccentric of me to imagine this “bubble,” but visualization is a coping mechanism that works for me. I once got through the claustrophobia of an unmedicated MRI by imagining I was at the beach. My “vacation” was so enjoyable I was almost sad when the MRI ended. The protective “bubble” just works for me.

If you can develop coping strategies – whether or not they involve visualizing your own bubble – whatever works to keep you calm, centered, comfortable, and in a joyful state of mind is all that matters. So think about your situation and what things bother you the most. Then go about “planning” to deal with them ahead of time.

Create your own comfort zone, your own MS Bubble.

And if you’re a friend or family member of someone coping with MS, you might want to consider memorizing these 12 things you should never say to someone with a chronic condition.

But please add one more: Never say, “I took the liberty of cleaning up your desk. Hope you don’t mind – it was a real MESS!”

Why, that would just burst my bubble!

References:
Photo credit: Jeff Kubina, used with permission under the Creative Commons License
http://www.healthline.com/health-news/ms-12-things-not-to-say-022814#1

*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.

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