What’s in Your Junk Drawer?

By Penelope Conway

We all have one – that infamous junk drawer that collects a little bit of everything from spare keys, to half used chapstick, to pens, to some unknown mechanical looking thing that nobody is quite sure what it is, to just plain junk. There seems to be at least one drawer like that in every person’s house. Even the most put together house has lurking somewhere in the kitchen, office or bathroom, a junk drawer.

It goes unnoticed until a pen is needed to jot down a quick note, then almost as if by habit you go to the junk drawer. Immediately you open the drawer and begin tossing items back and forth as you rummage through the contents in search of that much needed pen.

You keep telling yourself that someday you’ll clean that drawer out. Someday, you’ll organize it. But every time you open the drawer, the task seems too overwhelming, too time consuming and just plain hard.

Does this sound familiar?

Just like that junk drawer, we have places in our heart where we hide away bits and pieces of the brokenness we have experienced because of multiple sclerosis and other painful life events. It’s messy in there.

I know I stuffed away my own share of hurts, fears and difficulties. Things like the anger I felt because I had to end my career due to my MS progression, the defeat I encountered when I started using a wheelchair, the abandonment I went through due to lost friendships, the fear I experienced because I found I was no longer able to be as independent as I was before MS came along, and the disappointment I felt because I could no longer wear heels. Yes, even my shoe choice was a difficult thing to face.

I kept telling myself I would face those fears, disappointments and pain someday. Someday, I’ll address those things head on. But every time I opened that drawer in my heart, the task seemed too overwhelming, too time consuming, and just plain hard.  So what did I do? I ignored it.

Every once in a while I would forget it was there and accidentally open it up. The emotions would start spilling out and I would shut it as quickly as I could.

“Nope, I’m not dealing with that. I’m not ready,” I would say.

But I knew I needed to take some time to dump everything out, sort through what should stay and what should go, and then take the trash out. It wasn’t easy. I actually think it’s one of the hardest things in life to do, but it was time I let go of the hurts and fears weighing me down.

Today is a new day and you are worth too much to hold onto all those weighty emotions tucked away in your junk drawer. Set some time aside and start clearing out the clutter so you can make room for the beautiful things that you deserve in life. You are worth it.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (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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Spring!

By Lisa Scroggins

Finally, spring is here, and I feel more energized than I have for some time! I suppose it’s a combination of the improved weather, and an improved outlook.

When I saw my neurologist in February, I asked about Lemtrada as well as Ocrevus (which has since been approved by the FDA). My doctor wasn’t very encouraging about either option, and I was frustrated. I talked with my husband about getting a second opinion. I wanted the latest, greatest treatment, and I wanted it now!

I suppose I’m the classic dissatisfied person with long-time MS. Things really went south for me a few years ago, and I won’t lie: I was deeply sad, and shaken by the newest losses I was experiencing. We have made trips to see a specialist, and had high hopes for something new that might help me improve. I’m sorry to report that not only did the specialist not have any new ideas or ones that differed from my general neurologist, but she turned out to be a truly unkind person. By that I mean that from the first moment I met her, her basic social skills were sorely lacking, to the point of rudeness. (Example: when I first met her, I held my hand out to shake hers, and began to introduce myself. She held her hands up, palms facing me, saying, “I just washed my hands!” My gut told me this was weird, but I fought my instincts. I didn’t know this doctor yet, and we’d traveled quite a distance, incurring hotels, meals, gas, etc., and the last thing I wanted to do was go back home without getting seen.) That kind of thing can happen to anyone, but somehow, because MS is a chronic illness, and I made special arrangements to see a so-called expert, I was unprepared for the callous way that the “expert” treated me. It seems obvious in the abstract that not all doctors have a great “bedside manner,” but I confess I was really vulnerable and it hurt, probably more than not being offered something new to try.

Back to my local neurologist and my silent demand that I must be on something new. While I have not officially gotten a second opinion, I feel as though I have. I watched a YouTube presentation by two MS neurologists in another geographical area, and even though the words they used were very similar to what my doctor had said, it essentially was confirmation of what he had told me in February: those two treatments are new, and it remains to be seen if either or both have unanticipated, even serious side effects. I know they didn’t mean it in a disrespectful way, but they as much as said, “let others be the guinea pigs.” Worded more professionally, for people who continue to experience attacks while on another medication, one of these drugs might be a Godsend for them. But if attacks are not occurring, it’s much safer and wiser to remain on one of the drugs with a much longer safety profile.

I did not want to hear this, and yet, I needed to hear this. My husband didn’t say so, but I suspect he is relieved that I’m not pressing to hit the road again in search of a different answer. I’ve come to a proverbial fork in the road of navigating life with a chronic, sometimes cruel illness. The best thing for me to do is to continue on the therapy my doctor has prescribed.

People with MS are taking big risks to try to improve their functioning, and both Lemtrada and Ocrevus have the potential to be quite risky. The biggest buzz seems to be about HSCT (hematopoietic stem cell transplantation). This has not been approved by the FDA, although there are studies in progress. So far, the number of patients is small, and while it looks promising, I realized that I didn’t want to die in an attempt to get the procedure. I know of people who have gone to other countries to get this procedure, and have gone to great lengths to raise the money (in excess of $100,000) to do so. Not only am I unqualified to determine if protocols done anywhere are best practices, I’m also not fluent in any of the languages spoken where some are having HSCT.

Some of these people have died. Some advocates describe that a specific thing happened to this one or that one, and maybe those stories are true. And maybe they aren’t. I really did some soul-searching, and tried to imagine if I pushed to do this. I’m in a foreign country with my husband, when suddenly, I develop a complication. Things don’t improve, and I actually die. Well, then, my husband, having watched everything, has to contact everyone in our family and tell them. He has to get himself (and my body) back home, and deal with everything that happens when someone dies. I’m not trying to be dramatic, but I had to really imagine this. As much as I wish for an improved (maybe even cured!) condition, it seems cruel to put the people I care about most through the wringer. A less dramatic scenario could happen, too, wherein I didn’t noticeably improve, but we’ve spend a massive amount of money, not to mention the emotional capital draining away. And maybe I’d be one of the lucky ones, the folks who swear they’re like new.

Even as I write this, I wonder if I’m giving up too easily. Never stop fighting, right? The truth is that many people with MS profess to be willing to take gargantuan risks to get better. I counted myself among them. I’ve realized that I’m not such a badass, after all.

All of this has served as a kind of “spring cleaning” of my attitude. It’s surprisingly freeing to imagine not questing after another drug! Instead, I’m trying to focus on things that will bring me joy, as well as new “treatments” that I can control. I’m fortunate that we could afford to buy a Freedom Chair, and that allows me to ‘walk’ our neighborhood. I recently signed up for equine therapy and am looking forward to being outside on the back of a horse. Perhaps most telling of all, I found a book that has given me a lot of hope. I know I’ll still follow everything related to MS, I’ll research it and ask my doctor about it. Other people may push hard for something to get better, and maybe that’s fine for them. I’ve decided to focus on the here and now and the known.

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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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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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