Staying Connected, Staying Sane: Social Media & MS

Posted on June 22, 2016 by MSAA

By Jeri Burtchell

I’ve never been very outgoing. In my younger days, I was the one off in the corner at the party quietly taking it all in. Casual conversation terrified me.

So it should come as no surprise that, in real life, I only have a handful of friends and most of them are relatives. But when I was diagnosed with MS in 1999, my microscopic social world seemed to get even smaller. I’d never really taken into account that George, who faithfully bags my groceries, or Shirley, who has cut my hair for years, were friends, too.

During my first MS attack my legs became weak and totally numb. I was suddenly unable to drive. My car – and the mundane socialization of everyday interactions – came to a complete standstill. That’s when I realized how much I depended on the Georges and Shirleys of the world to keep me connected.

When I was first diagnosed, I was trying to care for my infant son while grappling with symptoms that made every diaper change seem like an Olympic event. The combination of raging MS and motherhood left me physically and emotionally exhausted. I kept that to myself most of the time, not wanting to burden my family and friends for fear of driving them away. I didn’t realize at the time just how toxic fear and loneliness can be.

It wasn’t until I got a computer and the blazing speed of dial up internet that my world opened up. The gray clouds had parted and the rays of friendship – or at least camaraderie – were beaming in. I found people online I could relate to. Others with MS who understood exactly what I was going through both physically and mentally because of this disease. I had only ever met one person with my condition prior to passing through this portal to a whole new world.

That was back when online forums and chat rooms were about as social as it got. But I learned a lot about my disease from the internet, and even more about symptom management and treatment options from others like myself. People in search of friendship and a way out of the isolation that chronic illness so often imposes on people.

Then came Facebook and Twitter, two platforms that have exploded in popularity, giving us access to the world and each other in real time. Empowering people living with chronic illness to find each other and share information, experiences, and photos of our cats. Facebook groups are where I go to learn the latest news of cutting-edge science in MS. Hashtags on Twitter give me an easy way to join conversations about health activism or to follow my passion – raising awareness about the importance of clinical trials.

It was through one hashtag, #whyclinicaltrialsmatter, that I met my new friend Janelle, who lives in Australia. Despite a 14 hour time difference, we Skype on Sundays now, brainstorming how together we might make an impact on the world.

If MS is the worst thing that has happened to me, the internet and social media have been among the best. My computer has enabled me to travel the world from my living room, learning, growing, and making new friends. Social media was the conduit, turning me from a frightened and lonely introvert into a health activist championing for change. I’m not saying that’s how it would – or should – work for everyone. Social media is a tool. With it, you can build whatever connections you like that fulfill you and add to your happiness and wellbeing.

I may not be close to everyone I know through Facebook or Twitter, but they all bring value to my life. They enrich me, they educate me, and they shine light into dark places when I begin to feel like my world is closing in. So while my small circle of family and friends in real life are my go-to connections, I appreciate what the Georges and Shirleys of this world mean to my social health. And I cherish my online friends who are never out of reach. They’re always just an app away.

*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.

Note to Self: What I Would Tell the Newly Diagnosed Me About MS

Posted on May 23, 2016 by MSAA

By Jeri Burtchell

Driving along a rural stretch of two lane highway in north Florida, the sun beamed down in the most cheerful way. I pulled off the road and parked in a spot with woods on either side. I got out of the car and sat on the hood, burying my face in my hands. The cheerful chirping of the birds contrasted sharply with my deep, mournful sobs.

I’d just come from my Second Opinion where a doctor had smiled at me, saying, “Yep! You definitely have MS,” before heading out the door to casually change the next life down the hall forever.

So here I was, alone in the woods on a gorgeous day. How could nature be so happy when I was so devastated?

After a good cry I got in the car and headed home to share the news with my family, and try to wrap my brain around the idea of “forever”.

Being newly diagnosed – especially in 1999 when the internet and social media weren’t even on my radar – was a very scary and lonely time.

Drawing by Jeri Burtchell

It’s been going on two decades since that day, and if I could go back in time and send a letter by carrier pigeon to the woman sitting on that car hood, here is what it would say:

Dear Newly Diagnosed Me,

I know you’re terrified, but trust me, I’ve learned a lot since then. You’re sitting here crying now, but so much will happen in the next 17 years you wouldn’t believe me if I told you. I don’t have time to explain, but I’ve written these tips to help you get through. You have to trust me on this…

You won’t have to do shots forever. At that time there were only 4 therapies (all shots) to choose from. I was terrified of needles and often skipped shots because of it.

Take charge of your health. There were many things I changed gradually after diagnosis—I quit smoking, started eating better and getting more rest. It made a difference in how I felt.

Don’t let one bad day—or month—keep you down. It’s hard to believe things will get better when you’re in the middle of an MS relapse. Hang in there, though.

Build your own medical team. My newly diagnosed self didn’t know that there are MS “specialists” who know more than a regular neurologist. I also didn’t know to stand up for myself and ask questions. On the advice of my first neurologist, I stayed on a therapy for 8 years that wasn’t working for me. When I finally decided to switch doctors, that’s when I learned about other options and found something that keeps my MS in check. So pick your medical team. Choose your specialists and your primary care doctor based on how well they communicate, how open they are to helping you explore your options, and how much you trust them. Never feel afraid to question them or get second opinions.

Explore your options. Besides the available treatments and therapies, find out about cutting edge research. There is so much going on right now in MS research there might be an opportunity to help bring a new breakthrough drug or device to market – and you’ll be among the first to benefit. Talk to your doctor or learn more on sites like MSAA.

Discover others and network. Not only does misery love company, but you can learn so much by finding others who “get it”. No need explaining how exhausted you are by fatigue, or what that crazy zapping feeling is when you bend your neck. There are people out there who know exactly what you’re going through. Network with them to learn about MS, to find out what MS clinics or doctors are awesome, tricks for getting symptom relief and more. Search Facebook for groups to join or find others by doing a Google search of multiple sclerosis support groups.

There’s no need to feel alone. There’s no reason to let fear of the unknown take over. Get involved, learn all you can, meet others, volunteer, and just keep plugging away at living the best life you can. Things will get better. I promise.

Love,

Your Future Self

Oh yeah, PS: Don’t wait so long to cut your hair. You really look a lot better now. 🙂

Living With MS: One (Careful) Step at a Time

Posted on March 11, 2016 by MSAA

By: Jeri Burtchell

I remember my first relapse. Early in 1999 my legs had gradually gone numb from the bottoms of my feet up to my waist over a period of two weeks. By the time I decided it wasn’t just a pinched nerve or something else that would go away on its own, I could barely walk. Every step felt like I was waist-deep in quicksand trying to push my way forward and sinking fast.

That was 17 years ago, and all but a few of my subsequent relapses have also affected my legs. Before I began my current MS therapy in 2007, I would often spend some of my time in a wheelchair during the recovery phase of the more intense relapses.

Although I have only had two mild relapses in the past eight years, it doesn’t mean I am living symptom-free. My legs have betrayed me many times over the course of the years, and my face has become intimately familiar with all sorts of things one’s face shouldn’t see up close — asphalt, dirt, and even kitty litter on one occasion when I tripped and did a faceplant right in the cat box.

So when writing on the perils of walking, I draw from firsthand experience (much to my chagrin).

Besides legs that tire easily, I’ve also developed drop foot. Drop foot is like having your kickstand come down on your bike unexpectedly. You’re tooling along fine when your foot drops mid-stride and causes you to trip over your own two feet, like flying over your handlebars.

So I’m terrified of walking without holding someone’s arm or using a cane, rollator, grocery cart or assistive device — especially when I’m traveling. In my mind my wheels are constantly turning, assessing the terrain, the angle of incline. Judging the surface for the traction I’ll get in the type of shoes I’m wearing. It’s mentally exhausting. I literally cannot walk and chew gum if I want to be competent at either task.

The Doozie of All Faceplants

It was 2010 and my best friend Karen and I decided to take the kids to the county fair. She had her niece and nephew, and I had my youngest boy, Alix, with me. I was wearing sensible walking shoes and told all the kids I’d just watch them ride the rides so I wouldn’t get dizzy and fall. I thought I had covered all my MS safety angles.

It was the perfect day. Laughter and screams of delight filled the blue skies. We ate popcorn and cotton candy, and strolled around until the sun began to set. By that time the kids had ridden every ride except for the Zipper.

The Zipper was halfway across the fairgrounds and as we headed over there for the final ride of the day, I began digging in my purse for the rest of the tickets. With both hands occupied, my feet decided they’d had enough. My left foot dropped, scraping the asphalt pathway we were walking on and I was catapulted into the air.

I landed Tim Tebow style, on one knee for a brief second before launching face first into the pavement. I heard my sunglasses scrape the ground before flying off and skittering away. My initial reaction was “Crap! Those glasses were prescription!”, but I calmed when I remember they were just $5 drug store sunglasses. Then I could focus on what really mattered — the bloody egg-sized bump growing over my left eyebrow.

Alix and Karen came rushing to my side and helped me to a nearby bench, then ran to get some ice. I just kept asking for someone to call an ambulance. With the ice bag pressed firmly to my head, I leaned over my knees trying my best to ward off the nausea that was overcoming me.

Before long I heard a voice.

“Ma’am, can you stand up and get into the vehicle for me?”

I’m thinking to myself, “What kind of an EMT would ask me to do that without even a cursory exam?”

“Can you hear me, ma’am?”

Finally I take the ice from my forehead and look up to see it’s a clown with a big red nose and a huge upturned white grin who is asking me to step into a golf cart. I was certain I’d knocked my brain loose.

After several confusing moments while we discussed the lack of foresight or budget allocated to their first aid preparation, he convinced me an ambulance was waiting at the perimeter gate.

Karen followed behind with all the kids in tow as we rushed to the hospital.

They ran a battery of tests that included everything but shaking a Magic 8 Ball. In the end, all signs pointed to a concussion. I have never felt so sick in all my life. I had two black eyes and a huge knot on my head. When I saw the eye doctor a few days later, he speculated that my sunglasses saved me from breaking my orbital bones.

I managed to come away from that experience without any residual physical effects, but one thing is certain: I had developed a newfound fear of walking. I never leave town without my cane, and if I go to a store for a loaf of bread I’ll be pushing it around in a grocery cart. It’s not that I need an assistive device to be upright, I just can’t trust my feet.

I used to fear balance issues as my body’s greatest source of betrayal, but drop foot has taken its place. When I begin to tire or know I will have to walk for more than 25 feet unaided, I deliberately high step, figuring if I pick my legs way up in the air, my toes have less chance of tripping me up. While it might look silly, I believe it has saved me from kissing the concrete on numerous occasions.

If it gets worse I think I’ll look into a brace, but for now I’m taking MS one (careful) step at a time.

Life with MS: My 5 Ways to Stay Happy, Lollipops and All

Posted on July 1, 2015 by MSAA

By: Jeri Burtchell

Let’s face it, even days that start out all “sunshine and lollipops” sometimes wind up with you getting sunburned and the lollipop stuck in your hair. You can’t prepare for the negative things that happen in life and those with MS know what I mean when I say we have our fair share of them.

Whether it’s awakening to an unruly new symptom, or spilling all your medicine on the floor when the top finally gives, you know what I’m talking about. Some days it seems like Murphy’s is the law of the kingdom.

But what can you do? Well if you sense an impending bad mood brought on by circumstances beyond your control, I say put yourself in time out…on the beach…in a hammock. And don’t come back until your attitude is better. If that were possible we’d all be heading for the white sands and drinks with umbrellas.

Okay so that advice was just wishful thinking and not exactly helpful, so I’ll make it up to you before I ruin your day and risk your wrath. Here are five sure-fire ways to happy-up your day.*

Laugh at it. When circumstances threaten to punch a hole in your life raft, hang on. Take a step back (provided it was a symbolic life raft we’re talking about) and look at the big picture. Surely there has to be something funny about this that you’re really going to laugh at later. Granted sometimes it’s years later, but you’ll laugh. Try to recognize it now.
Take a nap. Seriously. Sometimes it seems like everything is going wrong, and maybe it is. But it could just be that fatigue has made life temporarily insurmountable. Just rest a while and sleep on it. Most of the time, for me anyhow, I will awaken feeling like I’ve got a fresh start (and even thinking it’s morning again when it’s actually 3 in the afternoon).
Hug a pet. Unless it was your awkward doberman who knocked the pill bottle out of your hands to begin with, our pets have a way of making it all better. A furry snuggle can drain the negativity and stress from your body and has even been proven to lower blood pressure.
Get back to nature. No pets to hug? Next time you trip over a laundry pile or discover the leftovers were out all night, try finding a quiet spot outside to commune with nature and reflect on something that redirects your mind and brings you happiness. A little sunshine (with proper sunscreen) does wonders for elevating your mood. And bird songs don’t hurt either.
Phone a friend. Make sure you have that one go-to friend on speed dial. Someone whose voice brings you joy even if they’re reciting the alphabet. You know the person. But DON’T talk about your problems–that’s not the point! Distract yourself by asking them how things are going. Then really listen. By focusing outward you stop dwelling on your own negatives and before long you will be happy again.

You probably think much of this is silly nonsense, but just trust me. Give it a try. Life’s too short to stay down in the dumps and you really do have the power to create your own positivity. We might not be able to choose what life throws at us, but we don’t have to keep going around with lollipops stuck in our hair either.

*Your mileage may vary. Batteries not included. Some assembly required. 🙂

Summer Planning and Travel Resources: An MSAA Blog Re-cap

Posted on June 17, 2015 by Samantha Schech

As planning begins for summer vacations or trips, many are left searching or wondering what resources may be available to help with planning. MSAA guest bloggers Matt Cavallo and Jeri Burtchell have written over the years to provide some helpful tips for the travelling MS community.

In Air Travel Tips for the MS Community; Matt, a seasoned traveler, provides his Five Steps to Stress-Free Air Travel for People Living with MS. Matt writes, “Travel is stressful for everyone. Airports are big, busy and fast-paced. Security lines can be long and the thought of standing, unpacking, and repacking at TSA is enough to unravel even the most seasoned traveler”.

Often times the smaller details are those which are overlooked when planning a trip. Those small details such as the size of your carry-on, or the snacks packed in your bag can often make or break a trip. In Jeri’s Summer Travel Tips for Flying with MS Part 1 and Part 2, she identifies some of those smaller details that should be thought of ahead of time in order for smooth sailing….or flying in that matter.

We often learn through the experiences of others. Please share your flying or travel tips in the comments below.

How MS Taught My Son a Life Lesson

Posted on May 29, 2015 by MSAA

By: Jeri Burtchell

I’ve discovered that children born to people with chronic conditions are often the most empathetic and compassionate people I’ve met. You can give kids life lessons when you’re in the grocery store and see someone using a cane or a wheelchair, but nothing quite explains the real everyday hurdles like living with someone who has a chronic illness.

I have two boys. My older son, Mark, was 16 when I was diagnosed. The younger one, Alix, was just six months. Mark was your typical teenager: independent and active, with a big circle of friends and activities that kept him busy outside the house. By the time Alix was a preschooler, Mark had moved out to begin his own journey into adulthood.

It was like raising two “only” children, with one big difference – the second time around MS was calling the shots.

Alix never knew me any other way, so the fact that I used a cane, or occasionally needed a wheelchair was just normal to him. He’d sit in my lap and ask me to take him for a ride. He didn’t see me as different. Nobody whispered to him “it’s not polite to stare”. When he looked at me, he saw his mom and nothing more.

He’s a junior in high school this year, taking honors classes. Tonight we’ll be attending an award ceremony where he’s receiving a mystery award. He’s been an easy kid to raise. Never gets into trouble and is always around the house helping out. He’s cheerful and never complains no matter how much I ask of him.

Things haven’t always gone smoothly, though. When he was in sixth grade he was having a hard time. The transition to a new school with new friends was a lot for him to handle. When it came time to attend one of his band performances at school, I really struggled over whether I should bring my cane or not.

I didn’t want him to be teased for having a mom who was different, but neither did I want to fall down. Which would be more embarrassing to his middle school mind? I decided to let him choose.

We stood by the car and I whispered to him, “should I just leave my cane here and ‘wall-walk’ where I can?,” and he looked puzzled.

“Why would you do that? Don’t you need your cane?,” he asked.

“Well, I don’t want to embarrass you, you know, if the kids tease you because of this or something.”

He became really indignant at the thought. “Just LET someone say something, Mom! Nobody’s going to make fun of you. What kind of person would do that, anyhow?,” he asked.

I used my cane and he took my other hand, proudly.

That was just one special moment among many that made me see that having MS has not always impacted our family negatively. Do I wish I didn’t have it? You bet! Does Alix sometimes feel “ripped off” that he didn’t get the younger, healthier model of Mom than Mark did? Yep.

But we do what we must to live the best life we can despite MS, and in the process it has helped shape my son into a fine young man who I know will always wear his compassion and empathy like a badge of honor. It’s who he has become, and I’m proud to be his mom.

So for those who have small children and wonder how your MS will affect them as they grow up, take heart. I bet they will be amazing, too!

Getting My Act Together: Staying Organized Despite MS

Posted on April 27, 2015 by MSAA

By: Jeri Burtchell

It’s easy to let fatigue be my catch-all excuse for why things are in disarray around here, but if you’ve known me for more than 16 years I’m not fooling you. Actually, I prefer my mother’s excuse for why I’m not very organized…

“You’re an artist, Jeri, and artists tend to be messy because their minds are busy creating.”

Sometimes, though, it seems my messy ways have only created more headaches and hurdles for myself — something I seem to have less patience for as time goes by.

I’ve decided to try a new tactic, though. It’s called “be kind to yourself.” So now, when I see self-made obstacles to stress-free living, I try to take off my blinders and correct one small thing at a time, making my living space – and my life – more “Jeri-centric”.

Case in point: Every time I need a pen I head for the three side-by-side pen cups on my desk. They are overflowing with pens I’ve collected on trips out of town and harvested from the copper-rich soil of pennies at the bottom of my purse, where together they perpetually weigh down my every move.

In what has become an exasperating ritual, I select a pen, begin to write, only to run out of ink three strokes into my thought. Frustrated, I put the pen back in the cup and select another. I’m often doomed to repeat this process four or five times before chancing upon a pen that can outlast my need for ink.

When my brother recently visited, he noticed this ritual, and asked me why I didn’t just toss the ones that don’t work. Such a simple, logical question and yet it had never occurred to me. Most likely because tossing the pen meant being near the trash can and required additional physical exertion. Yet in the grand scheme of things he was right.

Immediately I took all three cups to the kitchen counter where, one by one I assessed their capabilities by scribbling on a notepad. If it didn’t produce, it faced instant death by trash. In the end I had one pen cup full of pens that write, and had freed up two coffee cups.

I felt so good about that accomplishment, (and the way I am rewarded with ink every time I grab a pen to jot a note), that I’ve decided to see where I can make other small adjustments to be kind to myself. Here are a couple other ideas that I came up with. They might seem like “no-brainers” to a more organized person, but to me they were epiphanies that keep on giving, making me appreciate each day how thoughtful I was to make these small adjustments in my recent past.

● I went through all my spiral notebooks I keep around for work and ripped every page out that had anything written on it. Then I created project file folders, sorted all the notes for each project, and filed them. Now I no longer spend half an hour leafing through notebooks frantically trying to find minutes of a certain conversation.

● I went through a couple of piles of “chronologically filed” papers I’ve been meaning to go through and made three stacks: 1) Important/Save, 2) Needs Action and 3) No Longer Relevant/Trash. Things like the deed to the house and my passport went in the first stack, bills to pay went into stack two, and expired coupons, magazine subscription offers, or grocery lists from a month ago went into stack 3 (a.k.a. the trash can).

It’s amazing how easy it is to stay up on paying the bills now that I know where they are! And when it was time to take my son to get his Learner’s Permit at the DMV, I knew without a doubt where I could find all the necessary proof of ID for both of us.

My new hurdle is maintaining this level of order. But I’ve discovered that if I spend a little time at the end of the day making sure my work area is organized and the papers are filed it’s amazing how easy being kind to yourself can be.

Herding all the pens back into the cup corral at night and leaving myself a to-do list for the next day makes waking up the next morning a whole lot easier. It’s like I’m finally working with myself instead of plotting my own destruction.

So be kind to yourself and spend just a little time organizing a bill-paying station or home workspace with all of the things you might need. Cutting back on clutter-induced stress can have lasting benefits. Now if the bills would just pay themselves I’d be all set!

March is MS Awareness Month, & I’m More Aware Than Ever

Posted on March 18, 2015 by MSAA

By: Jeri Burtchell

I don’t know about you, but life with MS makes “awareness” unavoidable for me. I start the day with a symptom check, happy when I can make it out of bed and put one foot in front of the other. As I progress through my day, I’m constantly reminded of MS at every turn. It might be the alert on my phone that reminds me to take my medication or a check-up for the clinical trial I’m in. It may even be my drop foot that trips me up and sends me into a catbox face plant. And every once in a while it’s a wistful sadness as I take stock of all this disease has robbed from me. I try not to dwell on things I can’t change, but still I am “aware”.

March is MS Awareness Month–when we draw others into our world, giving a glimpse into what our new reality has become, in order to build understanding and compassion. Very few of us who have MS need our own awareness raised.

Sometimes sharing with family and friends can be awkward. I catch myself feeling like I’m whining or complaining when really all I’m trying to do is explain what life with MS is like. Just trying to raise awareness. Sometimes I close up and choose not to share, simply because it means I’m forced to think about it myself when that’s the last thing I want on my mind.

But during March I feel an obligation to “do my part”. I want more heads nodding in understanding than noses wrinkling quizzically at the mention of “multiple sclerosis”. I want more people saying “guess what I heard about a new breakthrough for MS!” The only way that’s going to happen is by all of us sharing our stories, or drawing people in somehow.

We might not have an ice bucket challenge on our side, but there are things we can do besides just posting pictures of awareness ribbons. And there are ways to work in a little levity so people aren’t just awkwardly trying to move on after your conversation has left them feeling sorry for you, or worse, confused. I’ve been giving this some thought and here are some ideas I’ve come up with…

If you’ve lost sensation in your hands, you could ask your friends to put mittens on and try to make it through their morning routine (all except for shaving or pouring coffee, maybe). Tell them you can’t feel things or control your movement as well as you once could. For some people with MS it feels like wearing gloves or mittens.

Or how about a “Sit-N-Spin for MS”? Do they still make that toy? Get grown adults to challenge each other to spin like crazy while someone takes a video. When they get up to walk they’ll be walking like we do with MS, stumbling around and bouncing off walls.

When others are forced to experience things that closely resemble symptoms of MS, sometimes they are profoundly moved. “I get it, now!” is something I hear a lot.

If your family and friends aren’t up for the MS experience, maybe recording your thoughts on living with MS in a video would help. Things that are hard to say face to face can be easier to share in a video sometimes. Healthline.com has launched a campaign called “You’ve Got This!” where those with MS are encouraged to submit a video of their experience, giving hope to the newly diagnosed.

Each time you share your experience, whether with your friends at home, through posts on social media, or even videos enlightening and encouraging others, you are building awareness and drawing the attention to the bigger picture.

To end this disease we’re going to need a lot more research, and that means a lot more funding. When people understand how MS can impact our quality of life, the awareness spreads. When you use your own story to engage others and spread the message, it can be a very empowering experience.

Not only will you be helping others to understand what we live with every day, but you will gain so much satisfaction from feeling like you’re doing your part as well. We might not be able to cure MS ourselves, but we don’t have to sit back and passively take what this disease dishes out in silence. Compassion starts with understanding. Understanding comes from communication.

Be the voice of MS, if only for one month, or week, or even a single day this year. You won’t regret it.

Resources:

http://www.healthline.com/health/multiple-sclerosis/youve-got-this

Photo credit: oddharmonic

From Junk Food Junkie to Health Food Nut: My New Year’s Resolution

Posted on January 23, 2015 by MSAA

By: Jeri Burtchell

Happy New Year! I don’t know about you, but I’m starting fresh, determined to make this year better than the one before.

I try not to make unrealistic promises to myself in January since I’m not so “resolute” when it comes to my resolutions. Instead, I set the bar low so I can cross it–even if I have to trip and fall to make it over.

This year I chose only one goal: to eat better. I figured if I can do that, maybe there will be side benefits like losing weight or feeling better.

I confess I’ve been a junk foodie in the past. I use air quotes when I say the word “food” as some people would beg to differ. Yes, I’ve eaten leftover french fries from the bottom of a McDonalds bag a day later. Am I ashamed of that? You bet.

It’s hard to be a freelance writer covering MS and ignore my own bad habits. The latest news regarding the gut microbiome and how it can influence a whole host of diseases has been in the news and on the internet so much I can’t help but feel guilty hoisting a Coke to my lips as I look on and take it all in. Maybe there’s no definitive proof that diet influences MS, but if I can control what goes in my mouth on the off chance I might feel better, don’t I have an obligation to do that?

So enough was enough. I slurped up the rest of my Wendys frosty and pledged to tighten up my definition of food. I mentally stationed a miniature bouncer at the corner of my mouth who only lets the good foods pass.

I wish this bouncer had a wallet full of cash, though. My first stop after I (loosely) defined my resolution was the grocery store. Who knew eating only organic whole foods and raw honey or cold-pressed virgin coconut oil was only a pastime the rich and famous could afford?

The upside to taking out another mortgage in order to eat right is that you are hyper-aware of expiration dates and the gradual decomposition of your quality fruits and veggies. If I wanted everything to turn to compost in the vegetable drawer I would have cut out the middleman and simply buried my hard earned dollars in the back yard.

Not everyone in the house is on this health food bandwagon, however.

My teenager hates vegetables and my 91 year old mother is set in her routine, and she’s in great shape. “She’s earned the right to eat what she likes,” said her doctor, and I swear I saw Mom stick her tongue out at me.

Even though this is my resolution, I’ve found myself asking “every day??” when I think about how often a person is supposed to eat like this. For a terrible cook (another confession), eating things that aren’t ready to “microwave and enjoy” has been a huge challenge.

So I started out with something easy. We all like shakes, and smoothies are like shakes, right?

I got out the old Hamilton-Beach blender and blew the dust off. I looked at all the fancy stuff I’d bought at the grocery store and began flinging in a handful of this, a spoonful of that. I topped it all off with a generous heap of kale (because you can’t toss an Oreo cookie without hitting a story about how good kale is for you), and I set the blender spinning.

It looked…disgusting! The green of the kale, combined with the red of the strawberries gave the concoction an overall brown color. Even though it looked kind of like a chocolate shake, my teenager wrinkled his nose, well aware there had been no chocolate involved in the making of his mom’s new drink.

Ignoring my own urge to pinch my nose closed before gulping it down, I sipped mine and smiled, nodding to him to give his a try.

It turns out we both loved it so much it has become our daily ritual–and the uglier the better. We throw every healthy thing we can find in there.

Besides the smoothies, I cut out processed foods, refined sugar, and carbs. I have no clue how–or if–it affects my MS, but I can tell you this: in the 22 days since I began, I’ve lost 5 lbs., I don’t need afternoon naps, and my brain fog seems to be lifting.

I can’t wait to see how I feel a month from now. Unlike past resolutions, I think I just might be able to keep this one!

Having a Stress-Free Holiday Season When You Have MS

Posted on November 19, 2014 by MSAA

By: Jeri Burtchell

Each year, I judge how well prepared I am for the holidays by the way Halloween plays out. When I saw my son donning the same scary mask we bought several years ago, I realized I’m as ill-prepared as ever. We’re lucky it still fits, I think to myself as holiday dread settles squarely on my shoulders.

The problem with his costume is not that we aren’t creative, it’s just that life is busy and time slips through our fingers like greased marbles these days. We end up making last minute plans and this Halloween was no exception: get the plastic pumpkin off the top of the fridge and start searching the house for that mask (two hours before Trick-or-Treat officially kicks off). I’m not creating the perfect childhood memories for my son, I fret to myself as I look under the bed for the face from Scream.

The limitations that my MS fatigue and reduced walking ability have placed on me are showing. I’m not looking forward to Thanksgiving and Christmas with the same enthusiasm as I once did. I’m filled with angst as part of me wants the ultimate “joyful” experience, while the other part just wants it all to be over.

But the holiday season is stressful for everyone. The difference is some people thrive on the stress, which they call “anticipation.” But others like myself are filled with dread. Ever since I was diagnosed with MS in 1999 it seems like I stopped looking forward to the time between Halloween and New Year’s Day. I think it’s because I worry about stress triggering a relapse. And then part of me feels guilty because the children in the family aren’t getting the full “magical” experience.

While I do face physical challenges, my MS isn’t the only factor shaping our family holidays. Mom is 91, and though she’s still undeniably the sharpest knife in the drawer, she doesn’t get around as easily as she once did. Still other family members are living with everything from lactose intolerance to diabetes which influences the dinner menu.

But we are managing. Together our family is learning to adjust to our new collective “normal”. We’re redefining what our get-togethers look like. The emphasis is on comfort and ease while downplaying commercialism. So what if the tree isn’t up or we don’t have a full turkey dinner with all the trimmings? We can define the celebration on our own terms.

The holiday dinners will be potluck so that we can each focus on one dish and prepare it ahead of time. Nobody will be banished to the kitchen and make-ahead dishes can be prepared when the cook (or baker) is feeling up to it.

With dinner prepared in advance, we’ll be free to enjoy each other’s company. The conversations, the laughs, the squealing children, and the photo ops will fill our memories of the day.

If Mom has to take a nap or I have to go lay down for a while, that’s okay. Everyone knows we both have our limits.

At Thanksgiving we’ll draw names for Christmas gift giving. Everyone ends up with a present but only shops for one person instead of ten. With a $20 limit and the convenience of online shopping, we can eliminate the stress of holiday crowds. We’re trying to make it more about the get-together and less about “what-did-I-get?”

Over the past fifteen years, I’ve come to learn a lot about managing my MS. I need plenty of rest, I need to eat right, and I need to exercise. But it’s just as important to reduce the stress in my life. Not only is it bad for MS, but for everyone’s health in general. By reducing the amount of effort (and stress) it takes to pull off a family gathering, we’re really looking out for our health.

The holidays should be about family, love, togetherness, and appreciation for every positive thing in our lives.

So when next year rolls around and my son is reaching for the same old scary mask at Halloween, I’m going to go a little easier on myself. The mask can be a new tradition, a symbol of how we can let go of society’s expectations. It will signal the start of a stress-free holiday season and–with the help of my family–I know we can do this!

References:
http://www.healthline.com/video/managing-multiple-sclerosis

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