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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I Am Free in the Water

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.

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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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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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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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Resolutions, Goal Setting and Multiple Sclerosis

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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New Year’s Resolutions, Taking Stock & Creating a Personal Health Reference Manual

By Stacie Prada

I used to think it was more important to just do things than to track them, but now I see the value in writing them down and acknowledging how far I’ve come over time. When the calendar year ratchets up and I think of myself as another year older, it’s a natural time to reflect and make goals. I like to review what I’ve accomplished, endured, thwarted and nurtured. When I’m feeling like I have a lot I still want to do, knowing how far I’ve come is a reality check for my expectations.

I aim for full life wellness, and I categorize my areas of wellness as health, home, relationships, finances, creativity and adventure.  At all times, I try to have at least one goal for each area. I like to incorporate small activities in my life that move me toward achieving my goals, and I like doing one or two large projects at a time that leap me forward on a goal.  Depending on my levels of energy and obligations, I’ll do a little or a lot on the larger projects. I try to establish and maintain balance in my life without sacrificing or ignoring another aspect of my life. My overarching goal is to keep working toward something while appreciating who, where and what I am now.

My 2017 Resolution: Take stock.

I think it’s helpful to take stock.  To think about what made me happy in the past, what I love about the present, and what I would like my life to be soon or someday. Committing those thoughts and ambitions to paper or a digital file allows me to look back over time to see if I still want the same things in life now that I thought I wanted in the past.

I’m taking stock figuratively and literally. I’m pouring through all of my personal belongings, my finances, my routines and my data. I’m compiling the things I’ve learned over the years since I don’t always remember something when I encounter it again. This will focus my attention on what I have, what I could adapt to use differently, what I still want, and what I’d like to upgrade for the perfect fit.

My Personal Health Reference Manual

A big project I’d like to accomplish this year is compiling all of my health information for things I’ve experienced, tried and currently use. I aim to create and maintain a binder for all the ways I keep my health in check. It will include all the successful and unsuccessful treatments.

The idea for this project came to me after my hip started hurting. I know that my hip can hurt when I jog longer distances, and I could tell that I’d overdone it. I believe the cause is foot drop that slightly affects my gait when I jog and triggers a misalignment in my hips to compensate.  In the past, I’d curbed my distances to deal with it. Sadly, it took hurting my hip twice in a month and six weeks of recovery time before it occurred to me I’d dealt with this before!  I remembered that I had physical therapy exercises from seven years ago that helped heal my hip from the same problem.  My hope is that using these exercises will not only allow me to heal my hip faster but prevent future injury and allow me to work back up to longer distances again.

This experience made me realize I need a personalized easy-reference health manual to manage my health with less stress. MS affects each person differently, and it requires constant adaptation to live successfully with MS. I want to reduce the amount of time spent enduring something and wracking my brain figuring out what will work for me in order to hasten effective treatment. An up to date personalized health reference manual will help.

The information I want to compile will include the following:

Conditions, Symptoms, and Injuries

  1. Indicators, triggers and causes
  2. Preventative measures including lifestyle choices, nutrition and activities
  3. Treatments including prescriptions, exercises, and natural remedies
    – Pros
    – Cons
    – When it’s effective
    – When it’s not effective
    – Why I choose this (or don’t)
  4. Experiences with this issue – what’s worked or failed
  5. Theories for why my body reacts a certain way – correlations proven and disproven

Sources of information I’ll use to compile this reference manual include:

  • Tracking calendars of health data and disease-modifying drugs
  • Notes I’ve taken at health appointments
  • Physical therapy treatments and exercises
  • My memory
  • My friends’ memories – often they recall things for me that I’ve forgotten
  • Books and internet resources that can trigger my memory for things I’ve tried but didn’t write down
  • Medical records from doctors

I’ve included a couple of examples at the end of this post that I’ve put together so far. It’s tailored to my health and experiences, so yours will look different. It’s also a work in progress, so I’ll keep adding and editing it as time passes and I change.

I wish I was low maintenance. Sadly, as I’ve aged I’m getting to be higher and higher maintenance. I joke that at least I’m doing the maintenance and not pushing that responsibility onto other people!

That said, if I do ever need help with my health, this will be a great tool for anyone helping me.  They’ll know what I’ve already tried, what works, and what hasn’t worked. I won’t need to start from scratch with each new provider.

This is organizing my health from my information and experiences. It frees me from relying on information from the web each time I confront an issue. Sometimes the information can just be too much, and what will help me gets lost in the mass of opinions and recommendations. This is organizing around me and benefiting from the decades of experience I have being me.

Examples of pages from my Personal Health Reference Manual:

Condition: Vertigo and dizziness with nausea

  1. Indicators, triggers and causes: crystals in ear out of place
  2. Preventative measures: none
  3. Treatments: Epley Maneuver to put crystals in ear back in place
    Pros: Non-invasive, I can do it at home, and no side effects. Immediate results.
    Cons: none
    When it’s effective: When dizziness is caused by ear crystals out of place.
    When it’s not effective: If dizziness is caused by something else.
    Why I choose this for now: It’s an easy fix.
  4. Experiences with this issue, what’s worked or failed. I experienced dizziness and nausea for a week before seeing my neurologist. He did the Epley maneuver to me on one side and it didn’t do anything. He did it again on the other side, and immediately my vertigo vanished! He taught me how to do the Epley maneuver at home, and I have used it a couple times over the years since. When I need a refresher, I’ve found a Youtube video to remind me.
  5. Theories for why my body reacts a certain way, correlations proven and disproven: It’s common.

Condition: Fatigue

  1. Indicators, triggers and causes:
    – When numbness intensifies or spreads from the usual areas
    – Spring and Fall when the seasons change
    – Less daylight in winter
    – More obligations than usual after work or on weekends
    – Workdays that involve constant personal interaction without breaks
    – Relationship stress
    – Big events – both happy and sad!
    – Long periods of added stress
  2. Preventative measures: Track fatigue level daily and adjust activities and treatments based on fatigue level.
  3. Treatments:
    1. Coffee/caffeine:
      Pros: It lessens light or moderate fatigue effectively and temporarily, it tastes good, it’s accessible, I don’t need a prescription, fewer side effects than other methods
      Cons: It can adversely affect sleep and intestinal health. Dosage can only go up to a certain level before getting jittery and anxious. I felt better physically (except for fatigue) when I went without coffee for a month.
      When it’s effective: For minimal to moderate fatigue.
      When it’s not effective: When fatigue is extreme.
      Why I choose this for now: I like it and it fits within my lifestyle. While I need to work in an office setting, it’s helped me maintain.
      Experience: Green tea inflames my throat. Caffeine tablets were harsh on my stomach. I may as well drink coffee and enjoy it.
    2. Rest:
      Pros: It’s helpful
      Cons: It’s isolating, it can conflict with life obligations.
      When it’s effective: At least some rest daily, but more intensive rest needed when fatigue is heavy or extreme.
    3. Modafinil (Provigil):
      Pros: It’s effective
      Cons: It requires a prescription, and my insurance doesn’t cover it. Out of pocket cost was $120 for six pills in 2012. (Could check on this periodically to see if it’s changed.)
      When it’s effective: It can help me get through periods of time when I’m not able to limit my obligations to get more rest. It’s a good temporary option if I can get an Rx.
    4. Exercise:
      Pros: Moderate exercise helps reduce fatigue. It’s good for weight management. It helps keep me mobile and able to experience lots of activities.
      Cons: Hard to always gauge how much exercise is enough and how much is too much. Too much extreme exercise over months can tax my body and lead to more fatigue.
      When it’s effective: When I’m not injured or severely fatigued.
    5. Organization & Prioritization:
      Pros: It lessens stress and frees up mental and physical capacity for reducing stress.
      Cons: It takes a lot of thought and practice to create organization methods.
      When it’s effective: Pretty much always.
    6. Blue light
      Pros: Non-invasive
      Cons: Daily time investment required, and the results aren’t immediate. Hard to gauge if it’s helping or not. It was an expensive investment without any assurance it would help.
      When it’s effective: Fall and winter when the days are short where I live.
    7. Limit activities
      Pros: Helps free up time for rest and sleep.
      Cons: It can get depressing and make me feel like I’m being punished.
      When it’s effective: When I’m still able to do things that satisfy me emotionally.
  4. Experiences with this issue, what’s worked or failed. I used a blue light in 2010 through 2012. I think it helped, and I should pull it out and try it again this winter. I don’t need it in the summer and I forgot I had it. Exercise, rest, coffee, and good nutrition work for daily maintenance. Modafinil works well when I need to keep going for a week or so beyond what my body would prefer. Rest is required to recover from overdoing it.
  5. Theories for why my body reacts a certain way, correlations proven and disproven: Fatigue is the #1 symptom common for people with MS. With so much damaged nerve insulation (myelin), it takes more energy to do common tasks than for someone with healthy myelin. My neurologist explained that the energy it takes a healthy person to walk a mile may be an equivalent of a mile and a half or two miles for someone with MS.

*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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The Ponds of Socialization

By Lauren Kovacs

Being with family and relationships are like skating on thin ice. Caution and preparation for these are something we need to do, especially near the stress of the holidays. Using some information can help us skate safely onto the pond of socialization. Having MS requires more of everything.

Like anything, we cannot “wing-it.” We cannot fly by the seat of our pants. The biggest thing to remember is to stay calm. Know your limits. Our speed is slow or “No.”

This is where knowing where the thin spots are will help.  I like to know people’s personalities ahead of time, if I can. Going to family events or parties may take some personality planning. I like to know who respects the limits of my MS. Know your audience, so to speak.

Know the thin spots and stay clear. Know what situations and who is safe. This will reduce stress. Pick events that keep stress and fatigue to a minimum.

Some people you may have to physically stay away from. Other situations or people you may have to emotionally stay away from. MS is tough enough without someone commenting how his or her sister-in-law’s cousin’s friend ate something and is fine.

Attending work related parties is part of PR for my husband’s job. I always use my chair.  It cuts down on fatigue so, I can stay a bit longer.  I am social, but in the evenings I am exhausted and the MS “misbehaves” more. My speech is garbled so, I mostly listen.  Sounding drunk at a work party is not wise. I try and eat before I go too.

Eating is very difficult for me. I can more easily refuse food, if I am not famished too. For me, it makes the gluten gods happy. I can be polite and have one or two bite size hors d’oeuvres. I don’t like to wear food in public so, I stay away from that thin ice.

If you are going to an unfamiliar place, take note of bathroom locations the minute you get there. Wear easy off clothes. When I gotta go, I gotta go now. I find thigh-high tights are easier than regular tights or hose. They are a bit drafty, but it is better than dealing with hose when now means now.

Know your limits. Don’t over party because the recovery time is not worth it. Try to stick to any diet restrictions. I mostly eat gluten free, but I allow a cookie or something. Balance for me is key. With a bit a planning, I can have that delicious gluten filled cupcake and be social. Be mindful of your limits and needs. A straw is a must and I carry an extra one in my purse. Most of all, try to enjoy the season.

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Feeling Connected and Nurtured When I’m Alone on Christmas

By Stacie Prada

Families seem to be expanding and shrinking simultaneously these days. With second and third marriages, births, in-laws and kids by marriage, the number of people I care about and am related to keeps growing. At the same time, divorce, death, living miles away and conflicting schedules reduce the number of people I spend time with in-person during the holidays.

This year I vacationed over Thanksgiving week, and I enjoyed a lot of time with family and friends while having a lot of fun. Now I’m back at home and while I’ll have plenty of parties to attend this month, I anticipate spending Christmas Day alone. Living far away from my closest family members makes it impossible for me to spend all holidays with them. I enjoy spending time with others, and I enjoy my time alone. Still, there’s something about the holidays that is tricky. If I don’t plan ahead, it can be easy to fall prey to self-pity.

In my life, I’ve experienced a couple decades of small family gatherings and another couple decades of large and wonderfully chaotic extended family holiday events. More recently I’ve experienced celebrating holidays solo, and it’s coerced me to think hard about what will allow me to enjoy the day alone. For me, I feel nurtured if I can include some time connecting with people important to me, some time outside reflecting and appreciating all of the good things in my life, and some time indulging with good food and drink.

If I’m going to be alone on a meaningful day, I try to connect with others in one or more of the following ways:

  1. Try to set up a time to Facetime or phone people important to you. If schedules are complicated, email or text a holiday greeting.
  2. Do things to connect with people throughout the month or year, not just on or near the holiday itself.
  3. See if friends will invite you to join them. You can be somewhat subtle by asking what they’re doing. They’ll ask what you’re doing and often invite you to join them, but make sure before asking that it’s someone with whom you would like to spend the day.
  4. Ask a neighbor if they’ll be around. You can get together for an hour for coffee, tea or wine. It doesn’t need to be big, just something to break up the day and include some interpersonal connection.
  5. Volunteer at a local charity. You can help prepare or serve a meal for others. You can also just be a smiling greeter if you’re not able or up to performing tasks. Listen, share, learn and connect.
  6. Tell people that you’ll be alone and would appreciate a phone call. Often people assume I have it all together and will be busy. They’re happy to connect when they know it’ll be appreciated and not a bother.
  7. I’ve never found a relationship that does better from no interaction. Give people a chance, and don’t assume the worst. Appropriately credit responsibility for behavior to the person doing it. Feel good about yourself. Make sure you feel good about your behavior regardless of the actions of others.
  8. Consider people you know that may also be spending the day alone. Make plans to do something together for a portion of the day.
  9. Post something to Facebook. One Thanksgiving I enjoyed watching the sunrise on the beach while drinking my coffee. I took a video of the sunrise and shared it with friends while expressing my gratitude for them in my life.

Some of the ways I’ll nurture myself include the following:

  • Do something special for yourself to commemorate the occasion. Do something indulgent for you, or engage in some activity you love. Sit on the beach, go for a walk, or stop at a coffee shop that’s open. What you love may be totally different than anything I would ever consider.
  • Find a restaurant nearby that’s open, and go alone if you want.  At the very least you’ll talk to people that have to work instead of spending time with their own family.  It’s usually a very friendly time.  Plan ahead since a lot of places are closed on holidays.
  • Visit and leave flowers at someone’s final resting place. Honor the impact that person had on your life.
  • Make and enjoy a meal you love if you enjoy cooking.
  • Decorate, even if it’s just a holiday themed bouquet or plant. Differentiate the day and your surroundings from every other season or day of the year.
  • Get outside. Even a rainy, cloudy day outside can feel better than staying inside or under cover.
  • Think about what you could do so that you’ll feel loved and appreciated even if it’s just you who loves you.
  • Make sure you find a way to enjoy the time instead of just trying to get through it.

Connecting with people important to me takes some initiative. Lots of them have a busy day ahead, so it’s good to plan in advance to make sure my emotional needs met. Overall, I’ll be happy if I remember to genuinely look at the bright side, do something I love, connect with everyone I care about either during the month or on the day, and find a way to be generous.  And if nothing else works, I’ll distract myself and remember tomorrow is another day.

*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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