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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Keep it Romantic

By Lauren Kovacs

I am, by no means, an expert on romance or dating. MS is more fact. It does not have bubble shaped hearts floating around. More of a mean Cupid thing.

I married a guy from my church. We met at 17 years old. I was not officially diagnosed until I was 21, but had symptoms at 16. I was the little blonde cheerleader and he was the big high school jock (different schools).

High school sweethearts. Let me barf, I know.

I did well early on. MS did not stop me. MS behaved for the most part the first 15 years.  MS lived with US and not the other way around.

My husband knew the heat and fatigue were issues. I was active with our three sons and did Irish dance, clogging, and figure skating. I only stopped because of pregnancy. MS was locked up back then.

Fast forward. My youngest was in preschool and things began to change. I opened up to him and it was just too much. His active wife was starting her descent. The MS pit is dark for everyone.

Work and family life were a lot for him. Dumping my MS garbage on him was not working.  I clamped up and bottled it. Not smart. There was only so much room in the bottle. It held evil MS air and not some wonderful magic genie.

Fast forward again. The youngest is 7 and the pressure in the bottle starts to leak. I can’t handle it. I knew I could not unleash on my husband. I really needed help. The talk therapist helped a lot.

Now, I can hardly walk. He knows I can no longer write, sew or paint. He and my sons know I need to be near a potty at all times. He sees me struggle. We don’t really play “what if.” We are mostly one day at a time.

I read books and took the marriage personality test. I had taken a similar test when we did our marriage classes. I knew I needed to dump on someone other than him.

He came to his acceptance of MS on his own terms, in his own time. Like most MSers, acceptance comes in time. I am so very blessed. Lots of MSer’s spouses bail. Pressure comes from all directions with MS. Many relationships require slow tweaking when MS is the 3rd wheel in a relationship.

Step into the other person’s shoes. What if you watched your spouse’s slow decline.  It does take a very special person. MSers are special and they deserve a special person.

A disinterested third party is key to keeping the flame lit and keeping the wheels running smoothly.

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Dealing with Symptoms of Depression: Sports Car to a Jalopy

By Lauren Kovacs

This is kind of a touchy sticky subject for many. Depression is often brushed aside like sugar from a donut. We see it on the table and we brush it onto the floor.  It might be out of the way for the moment, but you only moved it.

MS has so many issues.  For me, I knew when the MS was changing and I could not deal.  I was losing control of my own body.  I went from a college athlete and very active to a total mess, after 18 years.

I was very angry.  I felt lost.  Something snatched my body.  Smashing plates helped, but then trying to replace the dishes I broke was too hard.

I started seeing a talk therapist and I talked a lot.  Just letting me have diarrhea of the mouth helped me cleanse my soul. Trust me, the mudslide was thick.

After about a year of just surfing the talk therapy wave, I was ready to try a tiny bit of medication.  I am not one to turn to medication, but daily crying was too much.  I was drowning in a mess and that was 100% not me.

I tried one anti-depressant and the heart palpitations and rage were so bad that I refused to try another. Six more months of daily crying was messing with my hydration. In addition, it took too much effort to apply eye make up only to then cry it off.  I agreed to try another, reluctantly.  I am very stubborn.

This particular one worked. It was just enough to help me attack the day. Before I take it, I notice I have a very defeated attitude.  After I take it, I am back in the game.  Put me in coach.

Symptoms of depression are complex, like anything with MS.  Anything weird warrants a mention to the doctor.  Telling mine was not easy. I did not like telling her about my dish smashing, but I know my “what’s the point?” comment helped her understand.

Medication or therapy may help; they may not. I find MS to be very trial and error.  What helps me may not help another, but most MS people will try something new.  Any “snake oil,” as my husband calls it, might work a bit.

Be open to telling someone your pain.  Be open to maybe trying something.  I was locked in a battle with depression that I did not have to fight.  Take a deep breath and evaluate.

Try and hold onto the MS wave.  Your body may need a bit of help.  I now have to wear a life vest in my own pool.  Yet one more thing MS took was my ability to swim.  I was depressed by this fact.  Now, it is a challenge.  I attack buoy-training head on.

Depression comes and goes with the ebb and flow of MS.  Don’t let it go, if something is getting you down.  You might need a life vest.  It can be embarrassing to need some help, but it is better than drowning.

MS folks live with constant loss.  Loss can be depressing.  I went from 60 MPH to about 10 MPH.  Going from a flashy sports car to a busted up jalopy is frustrating.  Mourning the loss of self is sad.  It can be tough to find yourself in the mud-sidle.  Keep looking.

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Who Wants to Know?

By Lauren Kovacs

MS has so many symptoms that it is hard to pick one that is talked about the least.  I will pick the most embarrassing, potty issues.  Admit it, no one touches this with a 49 1/2 foot pole.

Doing “the pee pee dance” is not often brought up.  Most moms can pick out a kid doing it though.  Dancing is not usually an MS thing either.  A pee pee wiggle or shift is all many of us can do.

One minute you are fine and the next minute the dam is about to blow.  Not much warning is how most of us roll.  Ladies after your period, I know you are draining off that bloat.

Your skinny jeans don’t fit because of the bloat.  Skinny jeans are hard to peel off quickly when you got to go, NOW!  You can’t wear them any way.  Leggings are a nice alternative.

I was never a fashion plate.  Being trapped in girls sizes never allowed for much sexy  dressing.  Being tiny does, in fact, carry some serious disadvantages.  Getting things tailored is not exactly practical for me.

Now, I am looking to replace my cute zipper/button shorts with the pull-on style. Easy off when I really got to go.  Plus, pulling them down or up, with one hand while using the grab bar for stability with the other is easier.

While athletic shorts are not super flattering, they give me a fast pass to board the potty. Bikers shorts underneath then help keep an incontinent pad in place.  That is a mental crutch for me.  It is there just in case.  I only employ that strategy on long trips. I worry about peeing myself a lot.

Now I stop to tinkle at every place possible.  It drives my husband and sons batty.  My young iron bladder was replaced long ago by pregnancies and age.  Then throw the MS into the mix.  Bad combo.  Kind of like when my son dips watermelon in ranch dressing.   The combo is never good.

On a trip to Canada a few years ago, I used the potty every chance I got.  My husband joked that I peed my way through Toronto.  Maybe, but I felt secure in my bladder.  I never worried about the dam breaking.

I can’t think of potty accidents as being no big deal or just an MS thing.  It can be crippling to plan around and deal with.  The worry and fear of potty accidents are very scary monsters. They are very real monsters for MS folks.

I always make sure my bowels are clear, before I leave the house too.  I get up and begin my day, before everyone else.  This gives them the signal that they need to be clear.  Gross, but still an unspoken MS thing.

I carry extra pants/shorts in my purse.  I roll them and secure with hair ties. Guys may have to carry a man bag.  Sorry dudes.  Some things you can’t stuff in your pockets.

I went from a diaper bag with stuff for the kids/babies to a large purse.  The kids are older now, but tissues, sunscreen, Purell, Advil, Band-Aids, cough drops, and the like are always needed.  In a way it is the family bag.  Someone always needs something and my purse has it.

Prepare for the worst. One thing I learned from my sons in Boy Scout is to always be prepared.  My purse is heavy, but someone is always digging through it.  They make fun of its weight, yet my purse is essential to the entire family.

Worrying about potty issues will not rain on my parade.  If the storm comes, I am prepared.  Make room for worries like fatigue and heat and not potty issues.  Try and live the wee bits of life that you can.

Trying is all we can do.  Ask a fellow MSer what they do about potty issues. (Go for someone of your same sex.  Plumbing matters).  Chances are that most will be happy to share.  It is mortifying when you have an accident.  Have a plan in mind. I am the typical “worst case scenario” lady, but at least I try to be prepared.

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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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Jump Into Spring Cleaning – Then Nap

By Lauren Kovacs

“Spring cleaning” is more than scrubbing floors.  Yes, dusting and cleaning under the bed are both good starts. Cleaning how you do stuff is also important.  Methods to your madness will iron out life-wrinkles.

I admit spring cleaning is something I abandoned on the side of a dusty road, in the desert, years ago. Along with the OCD Cleaning Lady and the Floor Nazi Mom, I left them behind too.  Relax; I gave them a bottle of water.  They were replaced with the “Do What You Can Lady.”

With three boys, a husband, and a dog, I am drowning in major testosterone.  Physical spring cleaning is often a losing battle for me.  I take one task at a time, now.  I also make lists of what tasks need attention.  Cleaning toilets never makes that list.

Learn to work smarter.  Expel as little energy as possible, but be proud of the tasks you do complete.  One trick I use to move laundry is using a rolling plant stand.  I can no longer lift laundry baskets onto my walker and pushing it was scratching my wood floors, even with putting felt dots on the bottom.

When putting away laundry get help and put away winter clothes, as you uncover summer clothes, at the same time.  I put the youngest one’s clothes into a designated container to give away, as it comes through the wash. The older boys put their own clothes into large plastic tubs, with the size and season written on paper on top.  If one of the boys happens to eat miracle grow and suddenly needs a bigger size mid-season, it is clean and dresser ready.

It would be easier, if they were turtles and their clothes grew with them.  I am also wondering if being nudists would help.  I guess having weeds with big feet, in my house, is just life.  The dog grows out and does not need clothes, thankfully.  We just adjust his collar.

Once we switch over seasons, I make a list of what is needed.  They are boys.  Stuff gets stained, torn, or runs away with the socks.  Pinewood Derby paint does not wash out, by the way.  Blood on soccer uniforms responds well to hydrogen peroxide, before the wash.

Do what you can and what you are good at.  I am good at organization, making lists, and researching.  Cleaning the blinds, I am not good at, however.  Embrace your gifts.

Clean your methods too.  Make sure to know easier paths to get things done more efficiently.  Save energy the best way you can.  Even driving can be made more efficient.  Maybe have a route mapped in your head of how you shop.  Write down the map, if you have cognitive issues.

I like to spring clean with a small bag of M&Ms.  I reward myself with the completion of each task.  Reward yourself in some way when doing anything really.  You know the effort it requires.

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Wellness is a Big Puzzle

By Lauren Kovacs

Wellness is as broad as MS itself.  It is a never-ending struggle for some kind of wellness.  It haunts most of us like a persistent poltergeist.  Little pieces fit into the MS puzzle and you need them all.

We all try and latch onto any floating debris. We ask, “What if it helps?”  There it is, the dreaded, “What if?”  Always try it; it might work for you.  Turmeric is a decent life-ring for some, for example.

It is really hope we cling to, in the end, no matter how small. Routines and eating well are obvious pieces. Many of us find reducing gluten and sugar helps.  The jigsaw puzzle of MS wellness is huge.  Someone’s failed try might be someone else’s small victory.

One piece I have found to be golden is mental wellness.  We all need to vent.  I have a talk therapist.  I dump my MS garbage on her, poor dear.

A disinterested third party is great for me, mentally.  I am a talker.  I can talk your ear off.  With recent MS stuff, talking is work. Ok, I sound drunk.  My brain wants to release, but by the time the flow gets out it is a muddy mess.

Unloading on your spouse puts a big kink in your marriage. Talking to a friend helps, but it has to be the right friend. Talking to a family member might not work either.

Many people are not equipped to carry the burden of listening to our MS struggles.  So, we put on a happy face and move on.  Eventually our bag gets too heavy and explodes or leaks.

A trail of MS juice follows us, if we ignore it.  It drips from our backpack with every step.  Wellness calls for us to find a way to lighten our load or patch the leak.  The MS backpack is a permanent fixture.  We can never take it off.  Wellness of any kind is a welcomed Band-Aid.

Talking to someone helps me feel better.  I can trip over my own words or smear them as they come out.  I need the release at times.  Friends might hear complaining and family might get annoyed.

Wellness is a puzzle piece.  Trying to smash it into the wrong place won’t work, no matter how you turn the piece.  Mental wellness is personal, and very important.  You have to find the best way you can to slide that piece of the puzzle in.  A Cadbury Crème Egg helps too.

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Wellness Needs a Nap

By Lauren Kovacs

I can’t stress this enough.  Fatigue is a relentless beast. If we want to be as well as we can, sleeping helps.  From marathon naps to a wee kitty snooze, it is a must.  Some days more than one is needed.

Don’t resist the craving to sleep.  Cave in and watch the back of your eyelids. Mid-day naps work for me. Even my dog knows when it is my naptime.   In this sense resistance is not good.  Don’t fight sleep.

I sleep with the phone and I only answer it if it is my kids’ schools.  Most people, with two brain cells to rub together, know I am out of order during naptime.  I have “out of area” numbers blocked by my phone company and if something gets through, I turn it on and off to get it to stop ringing.

Blocking out light and sounds help me too. I have a hard time with glare and sleeping in sunglasses is uncomfortable.  I put something over my eyes. Eyelids are not enough and fabric blocks it out.

A few drops of lavender oil on my sheets can be relaxing.  I also have a hard time clearing my mind.  Boy Scouts, soccer, Taekwondo and many other scenes in life are doing the Tango in my brain all night.  I draw the curtain on that sleep-sucking dance by reading.  A few pages of fiction turn the pages of life.

Listen to your body.  It whispers wellness secrets.  If you are too hot, your body tells you.  If you need to sleep your body will tell you.  LISTEN.  If your body says it needs chocolate…  Listen to it!

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Symptoms that Effect Relationships – The Infestation of Fatigue

By Lauren Kovacs

Relationships can be with your spouse, sibling, friends, parents or any living thing really. Sadly, MS contaminates everyone and every thing. It is ever changing. There is usually one symptom that takes the cake.

For me, the winner is fatigue. I swear a cloud of sleepy juice stalks me. It lurks behind corners and lays on me like a wet blanket. It will mess with every relationship and can smother events.

I often have to skip functions because of fatigue. The way I deal with it does not always jive with a particular gathering. Routines with MS work well, but not every event works around your routine. MS is not always flexible. People are happy to let babies nap; however, full grown adults don’t seem to get that same level of understanding.

I take half my “awake” medicine in the morning, nap, and then take the other half. This usually helps, but caffeine gum and coffee are heavily leaned on too. Not the best options.

My spouse knows my routine. Most people very close to me know it. There are times when my routine can’t be followed. Boy Scouts, soccer games, and Taekwondo sometimes jump in the path of my routine. I bend MS, as much as I can, in those situations.

The biggest effect of this is guilt. I fight guilt over missing the Pinewood Derby because I had to be at Taekwondo in the morning. I have guilt because I had to miss a soccer game because I have to nap. My parents had to go instead. It is a ripple. Asking for help often rolls into guilt.

I have to rest and miss some things and rely on my spouse, parents, or whoever. I deal with this balancing act all the time. I try not to tip the scale. Guilt and pride are always battling.

The guilt of asking for help and the pride of doing it myself tip back and forth constantly. People get mad because you didn’t ask for help, but the guilt of being a burden is often worse.

We carry heavy and complex weights to the scale. You have to try and balance that scale.  Do the best you can. Others often do not see this part of MS. Getting those scales to balance can cause fatigue. Take a deep breath, do what you can, and have some chocolate.

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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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