Changing Routine

By Lauren Kovacs

I was employed outside the home years ago, but I chose to stay home when I started my family.  Just when I was ready to go back, after 12 years, the MS had other plans.  Routines and MS are a must, for me now.  I love routine!  I can’t do “last minute Lucy” or be spontaneous.

I have the same foods for breakfast and lunch.  This helps me keep my bowel routine.  If I have not gone potty that morning, I rarely leave the house. Staying close to my diet is tough, when away from home.  I love junk food.  Gosh, I love it.  I really love gluten too.

I nap at the same time everyday. Even my dog knows when naptime is.  I schedule everything before noon.  Even Provigil let’s me sleep.  Routines are essential.

You do have to bend the routine at times, however.  Just make sure you have a plan, if your routine takes an unexpected turn.  Knowing ahead of time what to do, if your routine is pushed off a cliff or thrown into a muddy ditch.

A recent two-day beach trip left me for dead. I knew the MS sharks would circle the chum, but I did not have a plan.  I ate out and while it was tasty, the gluten boat threw me in with the chum.  More MS sharks circled.

It took days of fatigue, tears, stomach issues and fights with other germs to come out on top.  I conquered the mountain.  When I only needed one nap a day, I knew the current was changing.

Two weeks later I was still in bed by 8pm but, my three boys had a blast so, it was worth it.  I still was face down in the bed trying to get a nap.  Alas, I was finally able get into the bed and didn’t need to sleep on the floor.

MS is not glamorous.  Have plan B and C.  Routines are wonderful, but have a back up plan or two or three.  Being thrown off a cliff might seem ok, if you can climb up.  Once you make it to the edge safely, then what?  Don’t think that because you feel ok that you are.

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The Best Next Turn: Changing Careers

By Stacie Prada

Hands down one of the best changes I’ve made since my multiple sclerosis diagnosis is changing careers.  While I still work in the same organization, I work in a completely different field.  Still, I draw upon skills and knowledge I’ve gained from every job and experience I’ve had in my life.

My career path has in no way been anything a career counselor would have designed to get to the job I have today. In college, I never would have believed that I would have my current job and love it. I also never would have imagined that at age 38 I would get diagnosed with multiple sclerosis and realize with hindsight that I’d had MS since my early 20s.

The career I had previously was great for me. I was good at it, and it pushed me daily to grow and learn. I was rewarded with promotions, pay and increased responsibility.  I liked that I contributed to my community in a way that helped people through complicated requirements and paperwork. I liked being an expert in the field and making suggestions that would allow them to do their projects with the least hassle.  That job also required nonstop interaction with people in stressful situations, and it took a lot of energy physically. I would cram my weekend with rest to recharge enough to take on the next week.  Sometimes it worked, but more often it didn’t.

When I look at my employment path since the age of 16, I see that I consistently looked at what was available and with each choice made the best next turn. I’ve been in industries with no perceived connection to each other. They include food service, retail, skilled labor, government, business, and office. I’ve worked for myself and for others. I’ve worked at restaurants, a ski resort, a woodshop, a real estate office, an art gallery, in a building and planning permitting office, and a financial office.

A few years ago, someone approached me to assume their job when they retired. I hadn’t even known that person was watching my work! The job had never occurred to me as remotely possible for me, but now I have it and love it. It took a lot of effort to make the transition, but the payoff was huge for my quality of life and the pay cut worth every penny.

In my new position, I still learn and grow every day, I contribute to my community, and I help people.  I also have a job with a mix of tasks that allow me to engage with people as well as have focused project work without interruption. The mix helps me accommodate my fatigue issues immensely.

There are no guarantees for anyone for what tomorrow will look like. An accident or unknown health condition can take anyone out of the workforce at any time. I know my condition will progress, and someday I will need to change my employment or even stop working all together before I’m ready to retire.  My job now works for me today, and I hope it works for me for some time.

While having MS can make me feel vulnerable with my employment possibilities, I find I’m happier when I don’t prematurely limit myself.  When I come from a place of confidence in my abilities, I have hope and feel I can achieve anything I really want.

Career advice I would give myself and others is the same for starting a career as I think it is for winding one down.

  1. Build relationships. Sometimes the people we work with see something in us that would be good for a job we never considered.
  2. Learn whenever possible. Pursue things that interest you even if they don’t seem related to your job at the time. I’ve found in my career that no time spent learning has been wasted even when I changed fields. Everyone brings a different set of skills, knowledge and background to every job. It all adds value even if the fields seem unrelated.
  3. Know your strengths, and build on them. Understand you have a weakness as a consequence of that strength.
  4. Know your weaknesses, and get so good at coping skills or accommodations that they don’t hold you back.
  5. Be open to opportunities that surprise you and haven’t occurred to you.
  6. Do a good job wherever you are on whatever you’re doing.
  7. Be someone that people like working with and want to have around. I’m a firm believer that we’re all replaceable in our employment.  If we die tonight, someone else will eventually fill the job. People help and look out for others they like and respect.
  8. Never burn a bridge. People you thought you’d never see again sometimes boomerang into your life again. Forgive them and don’t hold a grudge for poor behavior, but don’t forget it either since they’ve shown you who they are. (I’ve had people treat me poorly given they didn’t respect my position, and later I was their boss or someone they really needed to work with. Seeing them suddenly treat me much better is off-putting.)
  9. Know when a job isn’t right for you anymore. Focus on making the choice that feels right for you each point along the way. If you change later, it won’t be failure. It’ll just be a redirect.
  10. Be wary of making decisions from a place of fear. It’ll stifle your potential and happiness.

I’ll never willingly leave a job without having my next life chapter ready to start.  As my body declines with age and illness, being the best me at each point will undoubtedly lead me to see the best next turn.

*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/ 

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Summer is the Carnival of Life

By Lauren Kovacs

Step right up and get your tickets for the carnival of summer with MS. Don’t be shy about entering the MS fun house. Try and visit places before the landscape melts in the summer sun. Distortions can be fun and dealt with at the same time.

MS is not fun, I know. Attack it with caution and preparation. Fatigue is an annoying clown that follows you around the carnival. It taps you on the shoulder just when you get your cotton candy. It makes you see it as a fluffy pink pillow. A nap would be nice. Take charge and eat it. I hate clowns.

Sandals can mean cool (temperature wise) feet. Cool feet often lead to cooler bodies. If you are a lady treat yourself to a pedicure first. I recently could not expose my toes because my son told me my feet were “jacked up.”

Stay cool by hanging out in the shade, if you skip a ride, for example. Eating ice cream or a snow cone can help cool you. Just use two hands because fatigue and/or heat can bring on tremors. I learned this by launching my ice cream cup at my mother-in-law. It missed and we laughed.

Laugh at yourself. MS can be funny. It can be very mean, but humor helps calm that beast. If you make light of something you did, it seems to help everyone to move on. Yes, I threw my ice cream cup. Funny. Next.

Wear wrap-around polarized sunglasses, and a hat that you can wet down. I had my manual wheelchair, when we went to a theme park recently. One of my sons pushed me and I occasionally closed my eyes to block out over-stimulation from sights. The glare was reduced when my eyes were open. Too much to look at can increase my fatigue. Glare drives me nuts.

Drinking only water can help limit bathroom trips too. I love soda and I often need the kick from caffeine. However, sticking with water is better. Fewer bathroom trips also help limit fatigue. Wear an incontinent pad, if you need to. They are bulky, but if you are sitting no one knows.

Limiting sights and stopping in shade helps slay the fatigue clown. Only drinking water limits the energy exertion involved with numerous bathroom breaks from caffeinated beverages. Proper sunglasses and hats you can wet down make a big difference. Wearing sandals, if your toes are pretty, can help keep your body cool too.

The summer carnival of life with MS can be tough to navigate. We are always trapped in the fun house. I know it is not really fun; however, the many distortions in our lives can be dealt with. Preparation and humor can help smooth that wavy mirror in the MS fun house.

Go enjoy yourself. Limits are all around us, but do your best. Shade, frozen treats, and limiting energy sucking activities can assist us. Try and stay involved and fight the inner hermit. Send that fatigue clown to the naughty corner, while you enjoy life. Know your limits and have no regrets at the same time. Have a churro. Chocolate melts.

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Spring Cleaning with MS

Spring has sprung, which means the weather is warmer, the flowers are blooming, and of course, spring cleaning and organizing is upon us!  We’re sure everyone would agree that spring cleaning can be a tiring activity.  However, for individuals with chronic conditions, especially those with accompanying fatigue like MS, this can be even more of an arduous task. Cleaning and organizing can be exhausting, and physical clutter can create mental clutter and even anxiety.

But our writers here at MultipleSclerosis.net get it. They understand the struggle and have written multiple articles around the topic of managing household chores and cleaning. So, we’ve created a compilation of the tips and strategies they shared to make it a bit easier to take on the spring cleaning frenzy.

When It’s Time to Clean                                                                     

  • Do a little at a time: To save energy, try to do a little cleaning at a time.  Pace yourself, you don’t need to do it all at once!  If you have limited mobility, try to plan ahead.  For example, if you pass through a room that needs cleaning, bring a swifter with you so you can clean as you go if possible!
  • Use a lightweight vacuum: Maneuverability can be much easier with less weight to move around. Even investing in a steam cleaner could be a solution, as they are easy to use and can cut down on labor.
  • Use long handled scrub brushes: These long-handled toilet brushes are advantageous when cleaning showers, tubs, and other household areas. They provide minimal bending and twisting and can save wear and tear on your knees.
  • Place a hanging rack over or near your dryer: This will help make it easier to hang items you may want to air dry.

Ongoing Energy Savers

  • Sit while you cook: If there’s space, keep a stool or high chair in the kitchen so you can sit down while cooking or prepping food
  • Save the steps: If you have steps in your house, leave items that need to go upstairs at the bottom of the steps, and at the end of the day make one trip. (Bring a bag if needed!)
  • Invest in a “grabber”: These can be very helpful, especially in the kitchen to reach or pick up things.  They can also be used to replace light bulbs that are hard to reach!
  • Work on clutter management: Staying organized is difficult for everyone. Taking a quick 15 minutes a day to tackle clutter can prevent long-term stress and help you from getting overwhelmed.

Sort the Clutter   

When going through clutter or miscellaneous items, try managing it with five categories:

  • Trash – Items that are damaged or can no longer be used/sold or donated.
  • Good homes – These items may go to a good home for someone else to enjoy or use.
  • For sale – These items may have some value and could be sold.
  • Storage items – These may be functional items that are not used on a regular basis.
  • Keep – These are functional items used regularly or items with sentimental value.

Ask for Help

Cleaning and decluttering is a process that takes time and maintenance, and it’s never a bad idea to seek help if needed! As always, you know your body best and what it needs, as well as when you should or shouldn’t push yourself.

Although often daunting, have a clean environment and reducing clutter may have a more positive impact on your life and journey with MS than expected!

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Why Self-Care?

Self Care by it’s very definition is “Care of the self without medical or other professional consultation” (or at least that is what Dictionary.com says). The very act of one caring for oneself would seem would be natural and come without thought. Then why is it so incredibly hard for individuals to practice self-care? We spend hours, weeks and years of our lives making time to care for others, putting others needs first and making to sure to be there for those around us who call. And while I’m sure this is incredibly helpful to the friends, neighbors, coworkers and loved ones who we give our time to, we often suffer in the name of others.

Please don’t get me wrong, helping family, volunteering for organizations, being there for friends and coworkers is valuable and vital to building good community and connection, but taking the time for self is vital to you. Often, and I’m probably not alone in this, I feel selfish and self-centered when I turn down working at a community event, changing plans to help a friend move or asking someone else to take something off my plate. But it’s important to remember that “an empty cup has nothing to pour out.”  So if you are depleted, running on empty, feeling emotionally or physically fatigued, not only will you personally feel the weight of it but possibly the interactions you have with others will also be impacted.

What is self-care? That looks different for every person. I enjoy a cup of coffee in the quiet of the morning on my back steps, going to the movies first thing Saturday morning when I’m the only person there and taking my favorite playlist with my DSLR camera and getting lost exploring my city on a beautiful day. Yours may be similar but it may also be completely different.

I’m a fan of podcasts and educational talks. If you have not heard of them, give TedTalks a try. They have a section on the importance of Self-care. And if you don’t want to take my word for why placing an emphasis on self-care is so important, give them a listen as they give ideas, tips and why behind the what of self-care. Listening to their talks may just be an act of self-care in itself 🙂

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This is for the Weary Ones

By Penelope Conway

This is for the weary ones, the tired ones, and the “I can’t go on” ones.

This is for the ones who cry behind closed doors yet muster up a smile to face the day.

This is for the ones who dream of the day multiple sclerosis is cured so they no longer have to deal with doctor appointments, meds, needles, and pain.

This is for the ones who keep going, even when they know they need to stop for a moment to do nothing but chill on the couch with a good book or a marathon of their favorite show on TV.

This is for the ones who long to take a vacation where they are waited on hand and foot; no laundry, no dishes, no vacuuming, no work of any kind.

This is for the ones who get stressed and overwhelmed with the demands a life with multiple sclerosis brings.

This is for the ones who find it hard to keep going, who long for a break, who need time off, and who deal with too much.

This is for you.

You are an amazing, courageous, beautiful person. You are not alone. Take some time to do something just for you. That pile of laundry… let it pile up. It doesn’t matter. Take time for you. Treat yourself to a movie, a night out, a steak dinner, a trip through the park, or a giant slice of chocolate cheesecake. Shake off those negative thoughts that cause you to feel worse than MS could ever make you feel.

Stand outside your situation and, for just a moment, try looking in from the outside. Think about what you would say to someone else standing in your shoes. Would you remind them of their value? Would you tell them to worry less? Would you encourage them to ask for help so they aren’t doing everything alone? Would you show them how to smile through the tears?

You have a mountain in front of you… an Everest. That’s your reality. But no matter how big it may be, it can be climbed. Don’t look at its massive size. Choose instead to take your eyes off of the rock in front of you and look out at the beauty all around. Stop for just a moment and breathe. It takes courage, determination and strength… and you have each one.

So as you climb Mount Everest with your heart pounding in your chest and your knees buckling under you, give yourself one tiny moment to realize just how incredible you really are. You are worth it. You matter!

*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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Invisible MS Symptoms and How They Affect Relationships – Even When They’re Subtle

By Stacie Prada

Being diagnosed with and living with a chronic incurable condition can test and change every relationship a person holds dear. Invisible symptoms are especially tricky. I know after my Multiple Sclerosis diagnosis I didn’t want to burden others with my problems. Just because I had a life altering condition, I didn’t think it should affect everyone else.

One of the adult life lessons I’ve learned is that people who care about us WANT to help. Withholding our struggles increases stress on our part and creates a feeling of being pushed away on theirs. They hate feeling helpless. We do too, but we have more information at any point than they do.  Think about when you’re driving a car in inclement weather compared to when someone else is driving and you’re in the passenger seat.  When you’re driving, you know whether you have control of the vehicle or not. You know how well the brakes work, how alert you are, and how long it will take you to stop if something happens. A passenger has little information other than what they see and feel, and they have to rely on their trust in you. Having MS is like being the driver, and our friends are the passengers when it involves our health.

While their intentions to try to fix our problems, make us feel better, or help in any way they can may sometimes feel pushy and cause conflict, working through the unknown and developing a new relationship dynamic is well worth the effort. All of the relationships I still have today are intensely richer for the awkward conversations we’ve stuck with and the commitment we’ve made to interacting differently than we did before I was diagnosed.

Invisible symptoms like fatigue, pain, numbness, balance problems, bladder and bowel problems, cognitive issues and heat sensitivity can affect how we feel even when we think we’ve got it all under control. There are times when I think I’m doing fine or faking it well, and dear friends will say they notice I’m not feeling well. It’s especially impressive how well people know us when symptoms are subtle and we may not even realize we don’t feel as well as usual. For me I notice that my patience lessens and I have a tendency to feel more pressure from people by what they say.

I asked two dear friends what they had to say on this topic, and one said that what hurts her feelings is when I hold back and distance myself. I can justify it by saying I don’t want to worry her or bother her, but it’s more likely that I don’t feel like admitting I’m having an issue or that I’m not up for hearing advice in that moment. One skill I’ve tried to beef up is to recognize when I’m feeling pressure or don’t want to talk about something anymore and say so. I’ve noticed it’s harder to do this the longer I wait to say something, And while saying I’m not up for discussing something in that moment may hurt their feelings, I think it’s better than continuing to suffer silently. The other skill I’m working on is to tell them that while I’m not up for it in that moment that I do appreciate their concern and perspective. I also want to start saying that I think I can continue the conversation another time.

Being self-aware, communicating consciously and not reactively, and considering other people’s perspectives has made living and loving well with MS possible for me. It’s definitely improved my relationships, reduced my stress level and contributed to a life I 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/ 

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Sleep? What’s That?

By Penelope Conway

At the end of an exhausting day yesterday, I collapsed into my bed and tried to sleep. You know, that thing where you curl up, close your eyes, snore and drool? Unfortunately, it didn’t work out for me last night. I spent the entire time wide awake through the yawns. A full night of sleep for me is more like a trip to a baseball game on a sold-out night than a trip to a relaxing spa.

Game night goes something like this…

You find your seat and settle in for the game with your team shirt on, a foam finger in one hand and a bag of peanuts in the other. “Play ball”…the game has begun, but since you are in the third seat on your row, everyone has to step over you to get to their seat. Your toes get stepped on by the first person coming by, you get smacked in the head with the next lady’s purse, and elbowed by the person after her.

You endure constant commotion and movement as people carry drinks and food up and down the row. One person even spills part of their drink on you. Then, just as the game is getting good, the person next to you starts talking so loud that you can’t even hear your own thoughts anymore.

You are stuck listening to everything about their job and the problems they are having with their boss…things you didn’t need to know, but now do…and in the process, you miss the epic play of the night. You were there the night a world record was set, but have to watch the replay to find out what really happened. You simply wanted to enjoy the game but it seems like there’s more going on in the stands than on the field.

That about sums up a night of sleep for me with MS: pain, dizziness, breathing difficulties, tossing and turning, muscle spasms, trips to the bathroom, and an overactive brain that won’t shut up. A night of sleep…I wish! Meds do help and for that I’m thankful.

When a friend tries to rationalize or downplay my fatigue, it can hurt. Many times it seems like the more I try to explain how tired my tired is, the more they try to fit it into their little perception box. Understandably so, they aren’t the ones living with it, but sometimes I just wish I could give them a taste of what my fatigue actually feels like. Maybe then they would get it.

I appreciate when a friend asks me to do something, but then is ok if I end up declining their invite because my body is simply too exhausted to function, even if it ends up being a last minute change.

Lately those times happen more times than I like. Sometimes just the thought of having to get myself dressed and looking presentable wears me out. If it’s not messy hair, sweat pants and t-shirt doable, it’s a lot of work.

Those that love me enough to give me the option to choose and then are okay if my decision is different than what they want or planned for, those are some of the most amazing people on the planet. No one should ever have to spend time defending how they feel and why.

The world is buzzing by at a hyper speed and it tries its best to force us to keep up with the pace it sets, but MS has given me a slower pace that requires pit stops and naps. Most of the buzzing about that the world wants us to do isn’t really important anyway.

I choose to hold onto the things that really matter in life like great friends, savory coffee and naps. Yes, naps are my new favorite.

*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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Summer Love

By Lauren Kovacs

Summer is a double edged sword for many with MS.  Making the monster happy is a battle.  While winning the war may not come until a cure, small victories can be celebrated.

Heat is a battle most of us fight.   Staying cool is essential.  Cooling vests with the ice packs work well.  I don’t enjoy looking like someone on safari suffering from some weird allergic reaction, but it is better than the alternative.  Lumpy ice packs stuffed into a vest are not a fashion statement anyone wants to make.

Stick to a routine, as much as possible.  I know having kids home for the summer is like herding drunken cats.  As a mother of three boys and being a frequent wheelchair user, I am very familiar with the struggle.  Pick an activity indoors, like bowling.  It is cheap and you can bask in the A/C with caffeine and cheese fries. You can still participate from a comfy chair.

Fatigue it my number one enemy.  It cuts me down with one swoop and then stabs me to be sure I stay down.  Coffee and soda are the poison of choice for many.  But, as caffeine is a diuretic and liquids have to exit the premises, these are not always good options for those of us dealing with tight time limits on the bladder.  The caffeine crash is another unsavory blow.

I have found timing is everything.  Time medication and naps to your daily needs.  My secret weapon is caffeine gum.  Chewing caulk-like gum is gross, but it gives me a wee kick without frequent trips to the potty.  Using the potty, for me, has its own gymnastic routine.  It also means using precious energy.  I feel like a gnat in winter already.  I cannot afford to use energy on potty breaks.

Take summer slow.  Summer days drift away so fast, but enjoy it too.  MSers are great at balancing.  Enjoy what you can, when you can and however you can.  Sitting in a lumpy cooling vest chewing caffeine gum is far better than missing out.

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The Invisibility of MS

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Living with MS can be a daily challenge, even if other people can’t physically see the struggle. The invisibility of MS symptoms can be one of the hardest and most frustrating aspects of living with this condition, so when we shared some of the data about this subject from our most recent MS in America survey, many members of our MS community told us about their thoughts and experiences. Here is what they had to say:

The top issue faced, especially now that it’s summer? Trouble with the heat and the way it impacts your body:

  • My activity is restricted by the heat. Especially today when the temperature will be in the 90’s.
  • I would rate the intolerance to humidity at the top.
  • My speech gets slurry and my balance is off. I get accused of being drunk.
  • The heat makes my head swim and consequently, my balance gets really bad.
  • I have been feeling more and more fatigue due to my body temperature going from freezing to hot. Each time that occurs, I have less energy, less motivation to do something.
  • Summers are the hardest for me!!! The last two weeks have been increased fatigue, less energy, pain, and brain fog! Most people love summer! I used to, but now it’s the time I struggle the most.
  • Severe fatigue & the heat in Alabama are really bothering me!

Fatigue: it’s a huge (and invisible) concern for many:

  • Fatigue especially. It’s like the first trimester [of pregnancy] fatigue times 100!
  • I have fatigue every single day. It’s hard for my husband to understand that it’s every day. I have maybe 5 times a year that I feel like a normal person.
  • Yep, and the lack of sleep because of spasms equals more fatigue.
  • It’s hard for others to understand how you can be so tired doing everyday things. After doing a load of laundry, going grocery shopping and making dinner I am exhausted!

And some other symptoms that can’t be seen but definitely make life more challenging:

  • Don’t forget the bladder and bowel problems.
  • It’s the periodic blindness that sucks for me.
  • And the headaches are brutal.
  • Mood swings are really challenging..
  • The tingling symptoms scare me. I’ve had a couple of really bad relapses and I’m always afraid I won’t feel my body again.
  • Pain needs to be one for me – it’s about 99%.
  • My issues seem to be centered around fatigue, weakness, blurry vision and weird cognitive stuff like memory issues or not being able to think of words, or using the wrong word.
  • My wife, family and friends will never truly understand what it is like to have headaches and other symptoms on a frequent occurrence and why and how it affects my mood, energy levels and potential plans in a day.

Do these responses ring true for you? What invisible symptoms do you struggle with?

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