After the Stress: The Arc of Relief Takes Time

By Stacie Prada

In wellness circles, we focus a lot on trying to reduce, offset, and avoid stress. It sometimes seems like feeling anxious or overwhelmed is perceived as a deficiency in our ability to handle life. I’ve come to believe that certain life chapters and physical conditions are inherently stressful and completely outside the limits of what any well-adjusted, positive and active person can live through without physical consequence.

I once heard that Continue reading

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Top 3 Ways to Manage Holiday Stress

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

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Tips for Dealing with Holiday Stress

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

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2017 Has Arrived

By Lauren Kovacs

It is tough to welcome a new year. Seems like I recently adjusted to it being 2016.  Alas, we must shed the old and embrace the new.  Shake it off.

Like anything with MS, don’t rush. Rushing does nothing good. Slow down.  Ease into 2017.  Take a deep breath and take a baby step into the New Year.

Setting wee goals makes the weight of the New Year manageable.  Don’t make a long list of goals.  Maybe do an extra few reps when exercising.  Doing 13 instead of 10 might be something you can do.  You can maybe add an extra pound to your weights. A few small goals are more realistic.

I know I soaked myself in gluten over Christmas and I never said “no” to Christmas cookies.  I was being polite.  Generally, it was a baked good free-for-all.  If it was within reach, I ate it.  I love candy too.  My daily PT suffered.  This month I am weeding out some gluten and doing part of my PT.

I started my New Year’s goals the day after Christmas.  A tiny bit each day does wonders.  I restarted my laps around the house.  I am trying to do at least one.  I am supposed to do three.  Wade in slowly.  No head first diving into 2017.  The water is cold so, most towel off and never go back in.  Don’t let too many goals shock your system.

I am trying to get off the couch more.  The butt marks on my couch don’t look good.  One of my sons got a real bow and arrow set from Santa.  (target tips) I go out and watch him practice.  I can’t get out there without help, but I am trying.  I am off the couch.

Take your time and slow down.  So what if it takes you longer to tie your shoes or hook you bra?  Rushing leads to frustration.  Slow and steady, as they say.  If you just can’t, after trying, ask for help.  Frustration leads to stress and stress is bad for MS.

In general, MS makes you slow down.  Take your time.  We run a very different race.  If I can shower without losing balance, when standing up to get out, it is a goal I reached. If I can comb my wet hair without smacking myself in the face, I met another goal. Take your time.  2017 is not going any place any time soon.

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Some Things People Wish They Knew When Diagnosed with MS

This past month, we published an article by one of our advocates, Devin Garlit, that centered around things he wished he had known about how his MS would progress upon diagnosis many years ago.  In response, many of our community members affirmed not having expected many of the obstacles they have had to face since diagnosis, including cognitive and mood issues, the complex trial-and-error nature of MS treatments, the unpredictability of MS progression, as well as social and medical support, additional stress, and the need for sufficient financial planning.  We wanted to share what they had to say. MS can affect everyone very differently, so not all of these themes may resonate with you, but it seems many individuals in our community have converged around a few key issues.

Friends and Family Support

“The hardest thing for me to explain to friends and acquaintances is my (often) sudden need to stop engaging and seeking a place for “quiet time” in order to regain control of my thoughts and executive function. Sometimes I have to just blurt out, ‘I can’t think right now’”

“If I am overtired or overheated, my brain turns to mush. I need my husband around when I attempt new activities that require exerting energy in public. He watches over me carefully and can tell when I will need help. So, I don’t attempt challenges like bus trips or museums, or traveling to new places unless he (or some other understanding relative) is with me”

Cognitive Fog and Stress

“From one person in a STEM career to another, cognitive issues are definitely the most scary for me, and my most persistent symptom (well, and fatigue … but the cognitive fog is almost like an extension of fatigue), and are probably responsible for my recent job “re-assignment” that has left me devastated beyond words”

“Stress has always been present in life, it is just how you deal with it that is important and that is something I am working on. Maybe looking for a counselor or someone who I can talk to for some tips”

“Wow can I relate, especially to the cognitive issues. I wasn’t prepared for that”

The Unpredictability of Medical Support

“My first brain doc was diagnosed with MS herself and had to retire. Reading this was like reading a biography of my life with MS. About to switch health insurance and consequently, will be starting over with a new neurologist. This will be my 4th brain doc”

“Yes the doctor part is true and so is the stress. I just recently changed neurologists and will probably change again next year”

“The part about the doctors is so true! You must advocate for yourself. I was seeing a neurologist that had me coming in every month! It was getting ridiculous and he didn’t seem to care how I was doing just that I was on [the same medication]”

“I was not very well informed by my neurologist when I was diagnosed. He told me to google MS and do my own research about it—that was the biggest mistake. I scared the crap out of myself”

Although MS can affect everyone differently, it is very apparent that no matter where are person is in his or her battle, there are some common things people don’t expect.  Please keep sharing your stories and personal journeys with us.  By sharing our experiences, we may be able to paint a clearer picture of what life may be like for those who are just beginning on their battle.

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No more stress? Is that even possible?

stress-and-post-its-penelope-cBy Penelope Conway

Stress is not a good combination with Multiple Sclerosis. I hear all the time how stress needs to be limited to keep from triggering an exacerbation, but how do you do that in a world full of “I want it now” people and “it can’t wait” situations?

There are hundreds of lists on the internet explaining what you can do to avoid stress, but listing things out and doing them are two different things. Then if you add MS into the mix of things, it seems an impossibility.

Maybe your day starts something like this…

You wake up in the morning to a busy day planned. You didn’t hear the alarm clock earlier so you are already being rushed to get your day started. It’s early, you’re exhausted and your body isn’t cooperating. You take a shower, and even though you did every cool down technique you know, your body is simply too weak to keep going at the fast pace you have set for yourself.

You take a moment to rest then push on to get dressed so you can get out the door to make up for missed time. All the while, playing through your head is a rundown of everything you must do today. You have lists created, app alarms set on your phone to remind you of your time constraints and post-it notes scattered everywhere.

You do your best to hold back your frustrations but before you have even left the house to begin the day, you are feeling overwhelmed and defeated.  Somehow MS just doesn’t fit into a busy day and somehow you always seem to forget that tiny little fact.

The unexpected happens much more often now that MS is a part of your world. You get tired faster, weak muscles limit your functionality, your vision messes with your ability to complete even the simplest of tasks, dizziness and vertigo trip you up, and your thinking gets all muddled in the process. It’s hard planning for the MS unexpected. I always say a life with multiple sclerosis is like a box of chocolates…you never know what you’re gonna get. (Thanks Forest Gump for the inspiration.)

I have discovered that stress makes you extremely tired and can cause MS to worsen, but it’s stressful to avoid stress so you end up stressed out anyway. It’s really not easy trying to avoid stress. Ugh…just thinking about it is stressing me out.

So how do you fit a life with MS into a stress free list found on the internet? Well, for me that’s an impossibility. It seems MS doesn’t like lists or plans. It kind of has a mind of its own and doesn’t seem to want me to know ahead of time what it has in store for me throughout the day.

When life become overwhelming, and many times even before it gets to that point, I find that I need to take a moment to step back from all my commitments, work, and obligations. I need to take a moment to pause and re-examine everything. Literally.

Is there anything I could change or remove from my day that would help ease the load? Do I really need to vacuum the house today, tomorrow or even next week? If I wait and take a shower before I go to bed rather than when I get up in the morning, will it help? Can I recruit someone to pick up a few things from the store for me so I don’t have to go? Will the world fall apart if the laundry isn’t finished?

You are more important than the chaos that surrounds you and way more important than the stress that it can cause. Work on changing your workload bit by bit, little by little, moment by moment. You won’t be able to quit everything (which I happen to think would be nice to do at times) and you won’t be able to stop the world from spinning out of control, but you can make a positive change in your own life.

Take time to slowly work your way out of those over-commitments by finding others willing to step in and help. You may need to juggle schedules around and say no to people you normally wouldn’t say no to, but in order to simplify your life and relieve the pressures weighting you down, you have to do it. It’s not an option.

Do what you can today and leave the rest for another day. Take one step closer to living stress free, and before you know it you will be enjoying your life….even with Multiple Sclerosis.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (http://positivelivingwithms.com/) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

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30… Well Make it 29 Days of Happy

I think it’s safe to say it’s officially fall, the weather has turned cooler (for the most part) the leaves are changing colors and Holidays are just around the corner. I know, I know we can’t rush these things but if some of our stores had it their way we’d be decorating for Christmas on Labor Day…but I digress. This month as we get ready for some of the busiest times of the year we are focusing in on stress and stressors. BUT before we get there I’d like to present an idea, a movement of sorts for this November…. A Month of Happy. I recently read The Happiness Project by Gretchen Rubin and at the end thought “A year is a long time to work on this. But if we take it 30 days at a time we should be good” (yes I know it could possibly be the same thing but stay with me).

5374200948_539b10fb1c_z-550x366“Happy,” as we all know, is a subjective term. What makes me happy may not make you happy, or anyone else for that matter. I think that is what makes something like this so important. Because it’s personal to you individually, and you make it exactly what you want. Now there are lots of blogs, planners, charts and How-To guides that will seek to teach you just how to be happy, but ultimately that’s what works for those people, and great for them. What works for you? For the next 30 (technically today is the 2nd so the next 29, but who’s counting) days decide to do one thing that makes you happy (let’s draw the line at one thing that won’t get you into hot water). Go outside and enjoy the leaves, stay in bed all day watching your favorite movies, Pinterest away to your hearts desire and then actually try some of those things. Read a book you’ve had on your shelf, stop in and sign up for that Thai Chi class you wanted to try, eat something you used to love as a kid or none of these things at all. Come up with a calendar and determine that everyday this month you will do something that makes YOU happy. Not for your kids, spouse, boss, family, friends instagram or twitter followers, but just for you. Give yourself permission to enjoy this month before the holidays set in and your plate gets full both literally and metaphorically. Enjoy the time you put into this and you might find that being happy is less about combating the negative or the stressors in our lives and more about making the conscious decision to do something for ourselves. Happy November 🙂

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We need a clean-up on aisle 7…

Sometimes it is easy to decide when to let something go. When a child outgrows his/her clothes or toys it may be easy to identify that those items would better serve someone else and then look to donate or trash/recycle the items based on their wear.

Other times it may be much harder to identify what needs to stay and what needs to go such that the clutter and chaos of too many “things” begins to build. It might be the clothes you were hanging onto in case you lost/gained some weight, not knowing which financial statements or receipts are important to hold onto, or it might even be the gifts and knickknacks which looked so cute when they were received but have never found a home on your shelves. For many people it is a combination of different types of clutter which may cause of sense of dread or feeling of being overwhelmed with not knowing how to get started with the clean-up.

Whatever is muddling up your life try the following tips to get started in clearing out the clutter:

1. Create a list. Compartmentalize where the problems lie so you can create a plan of action for how to deal with them.
2. Identify why you have held onto the items. Sometimes items hold sentimental value, monetary value, or serve a specific purpose and must be retained (i.e. tax papers).
3. Decide which task to tackle first and set a timeline.
4. Ask for help (sometimes it takes a helping hand to sort things out).
5. Get to work! Start on your first goal area with a keep, organize/file, and trash/recycle pile.
6. Don’t beat yourself up if the clean-up isn’t happening as quickly as you wanted.

Taking pro-active steps to clear out the clutter can help in the long run to reduce stress levels and help you to live a simpler life.

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Why I No Longer Fear the Holidays and Why You Don’t Have to Either (Even When You Have MS)

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.

Jerri's x-mas treeSo 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.

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