Jump Into Spring Cleaning – Then Nap

Posted on April 10, 2017 by MSAA

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.

Wellness is a Big Puzzle

Posted on March 29, 2017 by MSAA

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.

Wellness Needs a Nap

Posted on March 27, 2017 by MSAA

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!

This is for the Weary Ones

Posted on March 24, 2017 by MSAA

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.

I Am Free in the Water

Posted on March 1, 2017 by MSAA

By Simone Sanders

I was an unusually tall child. I stood at almost five feet tall by the age of six. So, naturally, my family began to speculate about my future athletic potential. My grandfather, who was an avid swimmer, decided that my lanky, thin frame would best be suited for swimming. And so my lessons began at seven years old. I remember I felt two things the very first time that I jumped into the pool: cold and free.

On land, I was quite awkward. Being much taller than the other kids left me at the end of the line most of the time. My feet and hands were too big to swap shoes and winter gloves with the other girls in the class and adults always seemed to notice my height first. But the very features that made me awkward on land made me graceful in the water. My big feet helped me swim faster than the other kids. My hands helped me pull water behind my body more efficiently and my height made me superior in a race to the finish line. In the water, I was a winner.

Fast forward twenty years and I still feel like a winner when I swim. Living with multiple sclerosis on land is rough. I walk slowly. My hands and feet are numb and tingling. My vision is blurred from optic neuritis. I am tired all of the time and my brain is sometimes in a fog. But I am free in the water. I don’t have to drag my body because my limbs are light. My hands and feet are both cold so the numbness and tingling stops. My blurred vision doesn’t matter because there is nothing to see in front of me but the finish line. And if I am tired, I float. In the pool I am not disabled. When I am swimming, I am enough.

In a race against MS, I win.

*If you are interested in learning more about using your own passion for swimming to help the MS community, please visit SwimForMS.org.

Symptoms that Effect Relationships – The Infestation of Fatigue

Posted on February 24, 2017 by John MSAA

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.

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

Posted on February 17, 2017 by MSAA

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/

Sleep? What’s That?

Posted on February 13, 2017 by MSAA

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.

2017 Has Arrived

Posted on January 25, 2017 by MSAA

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.

Resolutions, Goal Setting and Multiple Sclerosis

Posted on January 23, 2017 by MSAA

By Susan Russo

Every year on January 1st, the first thought to pop into my head is “OK, it’s a new beginning, what do I want to do going forward?”

And every January 1st, I say “Well, absolutely nothing comes to mind.” Except coffee. I need coffee. And eggs and some bacon. So I climb out of bed and meander my way into the kitchen, all the while telling my son “Happy New Year Chris! We made it through another Holiday Season, still intact and none worse for wear.” Still not married, still alone, and still no grand babies for me to raise. Chris just grunts in unison, rolls back over in his bed and drifts back into his safe place. What that is, I don’t dare ask. All I hear is a muffled, low grade growl of “just stop it mom, pleeeeeeaaase!”

As I take my cozy seat at the breakfast table with my favorite blanket, (and, yes, it does get cold enough in winter to use a blanket in Houston) I begin to reminisce on the past few years. “How is my MS doing?” I ask. It answers back with a flush of burning, tingling, a bit of numbness, and a side order of vertigo, reminding me, “Hey girl, I’m still here. Did you forget about me?” And I’m like, “geez, sorry I asked.”

No. I have not forgotten. It’s just in the midst of all my goal setting, you simply slipped my mind.

And that’s just it. The thing about setting goals for the new year…it really is so important. Resolutions allow me to forget about multiple sclerosis, even for just a moment. Thinking of my dreams and aspirations brings me to a happy place. And by the time I finished my toast with jelly, I have a list of a thousand things I want to accomplish. We all know that feeling of elation. Yes, I can learn to swim so my MS will stop burning me, as I splash around in the pool like a halibut. Yes, I will become a world famous artist, move to the Fiji Islands, employ a cabana boy, drink ice tea, and paint until my heart’s content. And eat tons of potato chips. I love potato chips. And maybe have a glass of champagne. Just because I can.

Then, Boom! Reality comes knocking on the door. “You can’t ignore me forever! Let me in or else!” I sigh and take a gulp of my coffee, politely expressing to my reality to “go away, I still have bacon to eat.”

The thing about reality…it’s real and it’s relentless, and it never goes away. So, begrudgingly, I focus. One step at a time. One day at a time. One goal at a time.

I will take my Avonex on time each week. (I was tired of my MS injections, so I skipped a few. Don’t tell my doctor.)
I will swim 2 to 3 times a week.
I will eat healthy foods. (Yeah, like that’s gonna happen.)
I won’t pester my son about marriage and babies and wanting a corgi puppy.
I will create more art because I am totally talented and people like my work.
I will volunteer at the local police department because I have respect for officers of the law. (Actually, I adore a man in uniform, just sayin…)
And, I will find a cure for MS! It’s gonna happen people!

My point is this. It’s imperative to set goals, especially when we are in a battle with MS or other dreadful diseases. Unfortunately, they are a part of our lives. We cannot ignore them. So, include them in your dreams and aspirations. Keep it simple. Don’t set goals you know in your heart you won’t keep. Be kind to yourself. Reward yourself. Go see that movie that you’ve been wanting to see.

Remember this. No matter how crazy the world gets, if you have just one goal that gives you a sense of accomplishment, set it and follow through. When you succeed, pat yourself on the back. Smile. You did it. Then set another. And another. Pretty soon, you will find that resolutions can be made and effortlessly (well, you may have to exert some effort) accomplished, not just on the very first day of a new year, but anytime you wish.

The choice is yours. And know this, if you falter with your attempts to better yourself and the world around you, do not dismay. Time keeps coming. Days keep flying by. And January 1st will still be the 1st day of the new year. Always.

Time for resolutions and dreams, with an entree of bacon, eggs, coffee, and more bacon. And perhaps a little grand baby to cuddle.

Heck, I’d settle for the corgi puppy! I’ll name her Isabella.

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