Keep it Romantic

Posted on August 16, 2017 by MSAA

By Lauren Kovacs

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

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

High school sweethearts. Let me barf, I know.

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

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

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

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

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

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

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

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

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

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

Relationship Questions I’ll Ask Now That I Live With A Chronic Illness

Posted on August 7, 2017 by MSAA

By Stacie Prada

Here’s the hard thing about relationships when you have a chronic illness. At any given time we’re at a certain place in how we feel about our lives and health, and we hope that those close to us can understand and be there with us. And it doesn’t always happen for our spouses, family members and friends when we need them. They aren’t always able to trust us and be dependable for us when we need them. They aren’t always able to promise or have the ability to be there for us for what we think may be in store for us.

These are good people that have been through tragedies and life hardships before. But sometimes something that isn’t temporary, isn’t going to get any better, and is most likely to get worse is beyond what they can handle.

We don’t sign up for being sick. They don’t either. The difference is they have a choice. And I’m grateful that it became clear before I desperately needed anyone that the relationship I was in wasn’t one that would support me in my probable decline.

I want to be wanted, not an obligation or sacrifice. I see other relationships where people get together after one of them has been diagnosed with MS. I’ve seen how they treat each other, and it’s shown me that it’s possible to have a relationship where hardship exists and it’s not perceived as a burden. The hard things that need to be done are treated as things people do because they love and respect each other.

I don’t want a caretaker. I want a partner. I want someone who will do things for me because they want to, not because they feel obligated. If someone isn’t up for it, the biggest gift they can give is to admit it and bow out.

I cringe when I see articles and comments describing friends, marriages and bodies as not “real.” My marriage was real. And it was good, really good for a while. We were strong and there for each other for a lot of excruciatingly hard times beyond our control. But dealing with what happens and staying around for what might likely come are different things.

For me I realized it wasn’t about whether someone would have me with my chronic illness, the question was whether I wanted them around for my future and helping me with my chronic illness. As I embark on a new relationship someday, I think the questions I’ll want to know the answer to are different and more specific than the first time I married. They extend beyond whether we want children and envision our futures and beliefs align. These are the questions I’ve compiled so far that for me capture relationship traits important for living well with MS:

Can you be gentle and respectful to me when my health inconveniences you?
Can you respect and appreciate me if it gets messy?
Do I like how you treat me when I’m sick or not doing well?
Do you continue to treat me as a partner when taking care of me?
Are you there for me when I need you? Are you accessible? Do you respond to my texts or calls in a timely manner?
Are you there for me because you don’t want to be the bad person or because you want to be with me?
Will you go to doctor appointments with me and share my experience?
Will you do things for me even if they don’t seem like a big deal to you but you know they’re important to me?
How resilient are you? How do you handle stress?
Will how I treat you be enough for you? Will you think being with me is worth the effort it takes?

These questions are reciprocal. Just because I know I have an incurable chronic illness, it doesn’t mean that my partner won’t need the same from me at some point. Nothing is certain, but hopefully building relationships that support unknown futures may be possible.

*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/

Exercise Your Face Off

Posted on July 19, 2017 by MSAA

By Doug Ankerman

I’m a huge advocate of exercise and stretching in the battle with multiple sclerosis.

Though I understand many of us (me included) have trouble with standing, walking and some basic movements of working out, there is one neglected area of our body we CAN exercise…our face!

Did you know you have 43 muscles in your face just waiting to be used?

Instead, we let gravity take over by pulling our faces downward. Sagging till we look less like ourselves – and more like Droopy Dog.

Forget all those age-reducing potions and the creamy-crap you smear on each day. Start looking younger from the inside out by toning up the muscles of your grill.

Exercising your face is goofy-fun and so easy to do even those of us with MS can do it!

I’ve put on my 80’s fitness gear to show you how…..

Make your face reeeeaaal small. Squeeze your eyes shut. Purse you lips like sucking on a lemon.

Then make your face big. Big as ever. Eyes wide. Mouth open (Careful of flies). And do it over and over again several times.

Scrunch your face to the right.

And take it to the left.

Do it again and again.

Wiggle your eyebrows best you can.

Puff out your cheeks.

Crinkle your sniffer.

Stick out your tongue.

Smile big.

Smile bigger.

Work your lips like you are making out with your favorite movie star. (Mine is Clint Eastwood so I’ll rethink that one!)

You can’t go wrong because ANY exaggerated movement is great for the face. And you’ll feel instant results. Your face will feel tighter, firmer and toner (Wait, that’s not a word).

You can exercise your face in just a couple of minutes. And you can do it anywhere except public places as others may think you have a tic.

Maybe as an MSer, we can’t walk so well, but we can look fabulous!

Get started now. You’ll thank me later.

*Doug pokes fun at MS and other nonsense on his humor website at myoddsock.com. He also disappoints his family on Twitter @myoddsock.

Sometimes Living with Multiple Sclerosis Can Get Overwhelming

Posted on July 17, 2017 by MSAA

By Penelope Conway

I want to talk about the elephant in the room. No, not a physical elephant, silly. I don’t think one would fit through my front door. I want to talk about depression among people living with multiple sclerosis.

Many people don’t like talking about how much a person’s life changes with an MS diagnosis or how much their life is actually spinning out of control. It’s hard facing the MS monster at every waking moment. Sure, someone living with a mild case of MS or who has a stable progression may think I’m crazy to even bring the topic up, but just because people aren’t talking about it or are choosing to hide their struggle, doesn’t mean it’s not real.

The reason depression happens is because our symptoms continually progress (meaning they keep getting worse), making life increasingly more difficult. We face things like numb body parts, fatigue, dizziness, vision loss, pain, emotional changes, decreased mobility, and lack of understanding from others. We lose jobs, friendships, financial stability and independence. There are countless challenges in every day, and as time passes they only worsen.

Personally, I have experienced changes to my body and feel them with such intensity that it’s hard to even put my disease progression into words. I can actually feel the numbness, pain and difficulties creeping up my legs, arms and my entire body as the day goes on. One day it was just my big toe that I couldn’t feel and the next it was my entire leg.

Coping with something that continues to progress over time brings on feelings of hopelessness, stress, despair, and a host of other mixed up, chaotic emotions. All I ever wanted was to fit in and have that carefree life that MS stole from me. Is it any wonder that depression happens? I mean, who wouldn’t get depressed knowing that their body was destructing from the inside, out?

There are times when it’s easy to face the challenges in a day, but sometimes it’s a battle between sanity and trying to hold on to hope for a better tomorrow. It’s when hope begins to fade and all that’s left is pain and confusion, that’s when the tears start to flow and depression rears it’s ugly head.

You may see me smiling, hear my laughter and admire my strength, but in actuality those things are covering the pain that doesn’t often get talked about…both emotional and physical pain. My smiles are real, but so are my tears. I have found that if I allow myself time to cry, the weight of everything I carry gets lighter. It’s much like a pressure reliever. I cry, vent, then take a deep breath, dry my tears and face the day. Just that little bit helps.

I also take an anti-depressant because I found myself crying all the time, even when there was nothing to cry about. I would cry over the silliest things too like forgetting a word or dropping a cup of water. Yes, me, the positive one.

I needed help and reached out to get my whacked out emotions under control. MS doesn’t differentiate between which nerves it’s going to mess with so when the nerves that help us manage our emotions short circuit, know that it’s just another part of a living with MS and that there is help out there. You don’t have to go through it alone.

If you are having a wonderful day, please don’t criticize someone that isn’t. Enjoy your day and share your sunshine with others. If you’re feeling defeated and frightened of the future, reach out to those around you for help, and if they won’t listen to your pain, questions and doubts, don’t be too ashamed to make an appointment with your doctor to talk about what’s going on.

Life may not have turned out the way you expected, but you have a story to share that can help people cope with the unplanned and unexpected. Talk about what’s going on with others. It’s time to let go of holding on so tightly to a life that once was and start living the life you have now, today. Take things one day at a time, and if needed one minute at a time.

*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.

Dealing with Symptoms of Depression: Sports Car to a Jalopy

Posted on July 14, 2017 by MSAA

By Lauren Kovacs

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

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

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

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

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

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

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

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

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

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

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

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

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

Finding Myself In A Funk: Staving off Depression Due to MS Disease Progression

Posted on July 10, 2017 by MSAA

By Stacie Prada

Each time a symptom worsens, it can trigger fear, grief, and depression: fear for the unknown future, grief for losing some physical or cognitive ability, and depression for the sadness of the whole life with multiple sclerosis experience.

Lately, spasticity in my arms and legs is increasing. Spasticity results when the central nervous system sends messages to parts of the body involuntarily causing them to tense. It’s causing me physical pain and affecting my coordination. I’ve tackled spasticity head on by talking to my neurologist, starting medication, stretching, exercising, and getting referrals for physical and massage therapies. It’s a bit overwhelming since I have enough in my life consuming my time already. But beyond this common MS symptom is the emotional distress triggered when I think about what will likely come as my disease progresses. My mood is flirting with depression, and that worries me.

It helps me to know that our moods will always ebb and flow between the highs of joy and lows of depression. It’s impossible to experience life joys and hardships without a changing mood. For me the goal is not to avoid sadness, it’s to recognize when I’m headed for depression and use those low feelings to motivate me. I hope to redirect my behavior and thoughts to something personally productive.

Being diligent about watching for potential depression, validating feelings, taking action, and assessing the experience after each episode helps me deal with the cycles of adjustment and depression that come with having a chronic and progressively debilitating illness.

Be diligent about watching for potential depression. The goal is to anticipate when I might be susceptible and recognize the subtle signs before it’s more difficult to course correct. Some ways I’ll recognize I’m at risk for depression are the following:

If something in my life is causing increased stress or symptoms are worsening, I’ll ask myself how I feel about it. Does it feel manageable? Does it scare me? I need to pay close attention to how I’m dealing with stressful situations and be on the lookout for depression.
Friends and neighbors check in on me when my routine is unusual, and I try to be someone who checks in on others. It’s critical to let them know I appreciate it when they check in, otherwise they may feel discouraged from doing so.
I try to notice if I’m declining activities I enjoy because they seem like too much effort. Given that fatigue can contribute to this, it’s good to be honest about the reason for the decision. We don’t do ourselves any favors with self-deception. We just delay helping ourselves out of a difficult situation and potentially increase our suffering.
Trust and encourage people close to me to let me know if they think something is off with me.

Validate feelings. Remember our physical and emotional health are inextricably entwined. Recognize that it’s normal to feel depressed when our health is declining. It’s not a character flaw or personal failing to experience feelings of depression. Give yourself credit for doing as well as you’re doing. Consider that you have a lot of skills that keep you living well with your condition and that needing more help is reasonable and going to happen periodically. Remind yourself that you don’t have to feel terrible and these feelings don’t need to last forever. There are actions we can take that can help.

Take action. I’ve found that if I can take just one little step to offset my low mood, it can put me on a path toward feeling optimistic and empowered again. Intentionally make the first step small. Success is what’s needed at this point to encourage taking the next small step that will hopefully lead to more.

Do things that naturally help your body release mood-boosting endorphins. Use the mind-body connection to your advantage by listening to music you love, dancing, stretching, and moving your body. Triggering your body to release endorphins won’t solve your problems, but it will make you feel better temporarily and sometimes that’s the best we can do in that moment.
Power through: Pushing yourself to ignore feelings of depression can help in a moment, but recognizing depression and addressing it directly is necessary for long-term wellness.
Pursue connection: Talk to someone. Your neurologist, counselor, confidants, and online groups closed to people with MS can be a good sounding board. They can help validate your experience and help you find your way through these feelings.
Contribute: Whether it’s through work, volunteering, mentoring, or even casual encounters throughout the day, find ways to contribute to society. Knowing that your value is more than your physical abilities is crucial for adapting each time your body deteriorates. Having purpose and giving to others helps develop this sense of self-worth. There are ways to accommodate disability to continue being able to contribute even if it looks different as our disease progresses.
Seek personal growth: Learn something new, create something, or seek opportunities to see things differently than you have in the past. A change in perspective can neutralize feelings of depression dramatically.
Consider supplements and medications: Talk to your doctor about treatments available to you. They can be used temporarily to offset depression that has surpassed the point of being able to tackle without medication. Medication may also be helpful for ongoing maintenance if needed long-term.

Assess the experience. Think about what triggered feelings of depression and what helped you to feel good again so that you might be more prepared for next time. Think of it as weaving a personal safety net that includes your posse of friends, family, and health care providers along with lessons you’ve learned from past challenges. Remembering your previous successes will help you be your own inspiration when you need guidance in the future.

The time between when I start exhibiting tendencies toward depression and when I recognize it may not be as fast as I’d like, but with practice and self-awareness I keep getting faster. Improving my response time reduces periods of distress and helps me build confidence in my ability to face my future with MS. I’m still in the midst of applying these lessons to my current situation, but I think I’ve reached a turning point. I have faith in my safety net, and I know that I’ll adapt. I also believe that thriving in life doesn’t depend on life being easy; instead I think facing challenges head on with grace is what thriving looks like.

Hidden Symptoms of Multiple Sclerosis We Just Don’t Talk About – (which happens to be all of them)

Posted on June 23, 2017 by MSAA

By Susan Russo

I recently visited my local CVS store. As I was in the checkout line, a gentleman and I struck up a conversation. Our discussion eventually led us to the topic of multiple sclerosis. I mentioned to him that I have MS. With a startled and unbelieving expression on his face, he said, “You have MS? No way, you have MS! You aren’t walking around like a drunk person!”

I just stood there with my mouth agape and proceeded to give him my best eye roll possible. (Eye rolls usually prompt a vertigo attack from me, but it was worth the risk). Then he asks me, “Are you sure you have MS?” I was so stunned by this ridiculous comment that I wanted to throw myself onto the floor or slam into a wall, but I politely refrained.

As I finished paying for my items and stepped away from the line, I noticed a woman giving me the, “girlllll….go-get-em-kick-his-butt look” for asking me such a stupid question. Finally, I said, with the utmost respect for his ignorance, “Yes, in fact, I do have MS.”

Believing our conversation had ended, I headed for the store exit. But this guy apparently decided to push the issue and said, “What are some of your symptoms, if you don’t mind me asking?”

Actually, I did mind, completely, but being the really nice person that I am, I said, in the longest run-on sentence I could muster, “I have burning and electric shock sensations, severe dizziness, vertigo, trouble putting my words together, fatigue so bad, I call it my “wet noodle” phase, extreme mood swings including periods of outrageous, uncontrollable laughter and moments of such despair, I think I’m in hell itself. I also have constant ringing in my ears and oh, yeah, I almost forgot, a really strange sensation of hot water being poured inside me, if you can believe it, and don’t even get me started on the incessant itching in my feet!” But hey, at least I’m not stumbling around like a drunk person!

He looked at me like I was absolutely insane, and said “Wow. That’s a lot of weird stuff. I don’t think you should talk about it because people probably won’t believe you.”

Exactly!

At this point, I wanted to smack this guy all the way to China, but, instead, I said, “God Bless you sir and have a nice day”, then, I said, “I will pray for you. You’re gonna need it.”

Here’s the thing. So many of us with MS don’t want to talk about it. Especially those really weird, unexplained sensations. Because, like the gentleman in the CVS store, people simply do not believe you. And sometimes, that even includes our own medical professionals.

I once told my doctor I could feel electric shocks in my legs along with a “biting foil” sensation. He said, “Well, I don’t know what that is, but I don’t think it’s a symptom of MS.”

Here’s the deal. Some of the most not-talked-about effects of MS are the worst and most difficult to handle, especially if our “truth” is not validated.

We want someone to just listen; to really hear what we are experiencing and acknowledge it’s existence.

When we are denied our “truth”, this says to me that my disease is not real. Well, I’m here to tell you, my MS and it’s plethora of ongoing reality is real. Period. End of story.

So, to that I say, talk about your unseen silent symptoms of MS. Share them with those who love and care about you. They will listen. They will believe.

And if they don’t, just do what I do. Roll your eyes in the back of your head, wave your hand, put a little “sass” in your step and say, “WHaaaatttt-Evvvvvr!”

Then, quietly walk away and pray you didn’t just set off a major episode of vertigo.

There’s an Earthquake Happening Inside My Body

Posted on June 19, 2017 by MSAA

By Penelope Conway

When someone mentions multiple sclerosis, a lot of people immediately think of numb body parts, walking difficulties and fatigue. Those symptoms are fairly well known, but there is so much more to this disease and so many more struggles that we endure daily – sometimes silently – that should be talked about and shared.

To me, multiple sclerosis feels like an earthquake went off inside my body and different body parts are experiencing continual aftershocks.

I remember one day when I was sitting on my couch typing out an email to a friend and my right hand began shaking uncontrollably. It was weird and scary all at the same time. I literally had no control over it. It seemed to be flopping about like a fish out of water.

I sat there staring at it thinking “Okay, you can stop now.” After some time it finally subsided a bit but still goes on these crazy binges from time to time that I have no control over. I have a weighted wristband that helps contain the tremors but even wearing that doesn’t stop them entirely. There’s always a slight shakiness going on.

Because of multiple sclerosis my body has been known to jerk and twitch without being provoked, I’ve thrown things across the room unintentionally, and once I even kicked someone…although that one could have been on purpose. I’ll never tell.

I also have this weird thing with my ears. They ring constantly and there’s a repetitive flutter happening in my right one like when water gets trapped in your ears while swimming and it’s trying to work its way out. Someone could be talking to me and instead of listening to them, I’m thinking “stop ringing, stop fluttering, just STOP!”

There are times when I may want my legs to move and they won’t, or need a hand to function and it rebels, but when sensation is out of whack too…that’s an entirely different level of weird. I have two fingers on my left hand that feel like ice all day long even in the heat of summer. I also have this strange feeling of water dripping down my cheek from time to time. I know it’s not real but I find myself constantly checking just in case.

Then there’s this strange feeling I have of bugs crawling across my skin and an incessant itching feeling in my arms that won’t stop with scratching, rubbing or creams…all happening inside my body where no one can see.

It kind of becomes like that old saying “If a tree falls in a forest and no one is around to hear it, does it make a sound?” Well, I can tell you for a fact that if the nerves in your body break and no one can see the damage, they really do make you do weird things.

Don’t let your body’s craziness drive you crazy in the process. It’s hard dealing with an out of control body. Sometimes you want to scream at it and at your entire life…”Stop! Just STOP!” But life goes on and nothing ever seems to stop. Know that you aren’t alone. There are others of us who understand and face this unseen monster too in some very weird and strange ways.

Normal is no longer what it used to be.

B & B

Posted on June 12, 2017 by MSAA

By Doug Ankerman

Let’s be frank. You have MS. I have MS. So we have that in common.

It also means we may have similar problems when it comes to B & B. No, not bed & breakfast. B & B as in bowel & bladder.

Yeah it’s not enough that MS throws a wrench in the works with our gait, balance, vision, emotions, memory, dexterity and much more – but it also takes a swing below the belt with potty stuff, namely lightning-fast urgency to go and crushing constipation.

But after over 20 years of shared bliss with multiple sclerosis, I’m used to it. In fact, the bowel and bladder have become such an influential part of my life, I carry their picture in my wallet.

Every day my bowel & bladder taunt me, tease me and pick on me like two older brothers raze the youngest sibling. So I must stay close to the little boy’s room. At times it’s like being tethered to the toilet. I feel like an astronaut on a spacewalk, only getting so far away from the ship. Or the bathroom in my case.

As a result, I believe my bladder has some type of built-in sensor, like a urological GPS unit.

It knows the location of every restroom near and far. And like a dog, I must leave my mark in every one.

Another element of MS you probably already know…is the closer you get to the bathroom – the more urgent you have to go. Sometimes my urge is so strong I begin the whole “unsnapping, unbuckling and unzipping” process before I get the door closed.

And be warned as the “festivities of going” usually begin as soon as your foot crosses the threshold of the bathroom. The bladder figures “Hey, I’m in the war zone, might as well fire the first shot!”

I could go on why we MSer’s are so consumed with our “B & B’s”, but what’s the point.

We really aren’t that fond of these vital organs, they simply control our every movement…Strike that (Poor word choice)…MSers must keep close tabs of every nuance of our faculties.

Just add it to everything else we have to be aware of, right?

Keep fighting.

*Doug pokes fun at MS and other nonsense on his humor website at myoddsock.com. He also disappoints his family on Twitter @myoddsock.

Who Wants to Know?

Posted on June 7, 2017 by MSAA

By Lauren Kovacs

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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