When the simple things are no longer simple

Most people don’t have to think about doing the simple things in life like answering the door when an unexpected visitor arrives, picking up some toilet paper at the grocery store or helping out a friend until something like multiple sclerosis comes along and messes with those seemingly simple tasks or plans. Sure, they have to juggle other plans around in order to fit the sudden change into their day, but most of the time those shifts are simple to make.

For me, in order to “run errands,” the timing has to be planned perfectly to ensure I have the energy for the remainder of my day. Not planning can end in disaster…meaning, can end in me vegging on the couch for hours just to regain enough strength to help me manage the remainder of my day. Some errands can set me back days…not just hours.

It’s that way with just about everything. I have to think about the simple things more than people should. For example, take the act of walking. That may seem like a strange thing to have to think about, but when I stand up to walk, I have to make sure I have the proper supports around me to keep from falling down. Then I have to concentrate on each step, movement, leg shift and foot lift. It takes GREAT effort and tremendous thought to do something as simple as walk.

If I need something in the kitchen, I can’t just jump up and get it. If I drop something on the floor, many times that item will remain where it landed until I have the strength to reach down and pick it up. By the way, that can mean it will remain on the floor for days. If someone comes to the front door unannounced, it takes so much energy to transfer to my wheelchair and make my way to the door only to find out it’s a solicitor wanting me to try their restaurant take-out service, that’s why most of the time I just don’t answer it.

When MS comes into our lives, the things most people take for granted become something we are grateful to still be able to do. We know that one day everything will change, the unexpected will happen, life will throw us a curve ball, and shifts will have to be made to even be able to do the simple things. No amount of planning prepares anyone mentally for those kinds of changes.

If you find yourself frustrated because you need to fill up your gas tank on your way to work today or because you need to pick up some cheese for tomorrow’s taco dinner, stop and remind yourself that you are still able to do those things…and be grateful for the little things no matter the inconvenience.

Don’t take anything you are still able to do for granted. Those things may take extra time to work through or you may have to get creative in the way you do them, but in the end you will have accomplished something greater than great. You will have done something some people are no longer able to do.

Don’t give up, don’t give in and keep going while you can. That’s what makes you an MS Warrior. Plan B, C, D, and sometimes even Z, ZZ, and ZZZ have become a part of my everyday life and I’m okay with that. I will keep trying, keep going, and shift with the changes until I no longer can.

Comic strip - I don't know

Advice from the experts…those actually living with multiple sclerosis

I asked people living with Multiple Sclerosis to share a piece of advice that they feel would benefit those newly diagnosed with MS. The response was overwhelming and very informative. I put together a list of their answers and hope it will encourage even those who have been living with MS for years.

If you are newly diagnosed, know that you are not alone. If you have been living with MS for years, sometimes reading a list like this will encourage you and help you to shift your focus back to things that are truly important in life.

The most recurring advice from people living with MS
  • Stay calm, you are not alone.
  • Stay positive. You will have good days and bad days.
  • Surround yourself with positive people.
  • Laugh.
  • Exercise.
  • Fight, fight, fight.
  • Have faith.
  • Take one day at a time.
  • Don’t panic.
  • Love yourself.
  • Keep living.
  • Be your own advocate.
  • It’s not the end of the world.
  • Listen to your body.
  • No matter how hard it is, DON’T QUIT.
  • Breathe.
More great advice, information and help from some amazing MSers

Not everyone’s MS is the same. What course of treatment works for me, for your cousin’s best friend’s boyfriend’s grandma, or your neighbor may NOT work for you. – Erin

Kick people who tell you about someone they know with MS climbing Everest or cycling around the world…so you can too. Oh, and get the old person attitude of saying what you think. – Leigh

Don’t start the meds the next day. Investigate, talk to others who use the meds, read up on them, join MS groups, get a couple of 2nd opinions, find a neurologist who knows about MS (not all do). Do some investigating on your own. – Melissa

It’s time to take exceptional care of yourself in EVERY way because you are sick and need it. And your life will thank you for it. Don’t listen to the horror stories, just live it up and REFUSE to LOSE. Rest when you really need to but not so much you forget how to walk. Practice walking every day so your brain always remembers how. – Chelle

Be who you are and not a diagnosis. – Chris

You know that song by Time McGraw, Live Like You Were Dying? Listen to that. Then pick yourself up and give it your best shot. – John

Drink lots of wine. :))) – Aistė

Don’t tell everyone right away, just those closest to you. I made that mistake. I spent most of my time trying to help everyone else through my diagnosis. People created so much drama and negativity. I wish i would have waited until I was more adjusted myself. – Cindy

Don’t wake up looking for your MS symptoms. Get on with your day just being you and live your life. Be prepared to rest and alter your day if your MS decides to appear. Sometimes it does good to slow down and “remember to smell the roses.” – Jacki

Just because they are doctors that specialize in MS doesn’t mean they walk with it. Research the things they tell you that sound off or weird. Get 2nd opinions. If your gut says no, then it’s probably a no. – Chula

You are allowed to fall apart…for a little while. Then get back up, smile and get on with it. – Odette

The journey has a lot to do with you…your attitude, discipline, diet, exercise, supplements. The best doctor is Dr. You! – Vince

Hold on, it’s a bumpy ride. – Shari

Know that your MS is unique to you and you only. Don’t get scared if you know of someone with a hard hitting, rapid progressing form of the disease because that doesn’t mean it will happen to you. Listen to your body and do what makes you feel better, and never underestimate the power of exercise, healthy diet, rest and laughter. – Danielle

Say hello to the new you. Never compare yourself to who you have been. – Sara

Never let anyone, especially yourself, make you believe that your symptoms are not real, or not that sever. They are real, own it, accept it, learn from it, and learn how to be happy around those limitations. No matter how many comparisons people make, remind them (and yourself too) that they are irrelevant to your issues. Your MS symptoms are just as valid as anyone else’s medical issues. You have value, and the hardest work you can do is making sure you believe that. When MS symptoms hit…and they can hit like a truck, you are valued. You are valued in those who love you, those who treat you like a person, and most importantly, you are valued by yourself. The most important person to be valued by. – Rich

Get YOUR GAME FACE on! – Jyme

Someone will love you for you…be patient. – Steph

If your body says it’s tired, rest! I used to think I was Wonder Woman and had to do everything in one day. My philosophy is that it will be there tomorrow. It’s not an easy journey, but you got this. I am a firm believer that if He (God) brought you to it, He will bring you through it. – Cathy

Only read stuff online from reliable sources. I over read and freaked out. – Netty

The worst scenario you have in your head may not be your destiny. Take it one day at a time. There are scientists working on this, and I think there’s light at the end of the tunnel. Keep pushing on. – Jennifer

Pray lots. Pam

…When you find that you can’t do the things you like to do because your MS won’t let you, be creative and find other ways to make it easier to do those things. Find a new hobby that your MS will allow you to do and don’t be afraid to ask for help from someone. Allow yourself to have more time to get things done. I like to have supper at 5:00. I would start at 4:00 and have no problem, now I prepare everything ahead of time like cutting up my onions, peppers or any thing else that can be done early. Just learn to adjust your routine with your MS so that you can still feel like you are on task. Give yourself extra time to get to where you have to go. Leave earlier then you would normally leave so you don’t feel rushed. Do the things you love but in a different way. – Karline

This episode will improve, but your health will now be unpredictable and never the same again, so make the most of life when you’re feeling good and be prepared for set backs. – Stephanie

Learn to laugh at yourself, because the world is going to laugh. BE KIND TO YOURSELF: allow yourself to have those days when you don’t belong on a ladder to change a light bulb and perhaps shouldn’t leave the house unescorted! – Kathy

You are always gonna be YOU, never lose sight of that. – Evie

Every day the ninja living inside of me kicks some MS butt

I understand how it feels to be drowning in medical bills, strained relationships, physical and mental exhaustion, stressful decision making and demanding responsibilities. Add to that the fact that I’m living every second of every day with multiple sclerosis and I might as well just crawl back into bed each morning before the sun even comes up and call it a day.

Somehow we face the impossible every moment of every day and yet as the day comes to a close, we always seem to make it. Many times I find myself climbing into bed feeling beat up, worn out, battered and bruised, but as I lay my head down on my pillow and take a moment to look back over the day, I realize that the ninja living inside of me kicked some MS butt.

Some days I push through bumper to bumper traffic with my legs and hands cramping up while my head is spinning making for an interesting ride. Most of the time it feels more like I’m on a roller coaster than an actual highway. The worst thing is when I get to the place I’m going to and I don’t quite make it to the bathroom in time. Those times happen more often than people realize. Thankfully I keep a change of clothes in my van and people don’t notice the magical change I make from black to tan pants.

As the day goes on I make mistake after mistake because I can’t keep my brain focused. Most of the time I’m pretty good at covering those kinds of things up. It takes great skill to stumble over words then turn them into something that makes sense. I think I’ve mastered the art of word replacement, finger pointing, hand gestures, and usage of the words thingamajig and doohickey fairly well.

Somehow I even manage to keep from burning down the house after forgetting about the casserole I put in the oven. Sure, it’s a little charred, but I am now an expert at scraping off the burnt parts and still producing something that’s edible.

Today may be an awful day for you, but it’s not the day you give up…even though you have every reason to do so. Instead, it’s the day you push through and remind yourself that if you can make it through the terrible, horrible day you had a few days ago…then you can surely get through today. Let your inner ninja loose and kick some MS butt.


Things I wish more people understood about Multiple Sclerosis

Lately I think I have experienced every emotion imaginable. I have cried more than usual, lost my temper for seemingly stupid and even unknown reasons, and become more withdrawn than I ever thought possible simply because my body and brain won’t cooperate.

I can literally feel the changes happening in my life, so much so that if I allow my thoughts to linger on my increasing weakness and struggles, it scares the crap out of me. (That’s just me being honest.)

It’s hard to talk with people about those fears and the crazy emotions I deal with mainly because, 9 times out of 10, I am met with “Oh, it can’t be that bad” or “You just need to think more positively.” I find it to be exhausting trying to explain progressive MS to people who aren’t willing to actually listen.

Here are a few things I wish more people would try harder to understand about life with Multiple Sclerosis:

1. There is no cure

No matter what you read online or hear people say, there’s nothing that has been proven to eradicate the disease from a person’s body aside from a miracle. There are symptom management techniques through supplements and diet and medications that work to slow the progression down, but that’s not a cure.

2. My symptoms are unpredictable

One minute I may be doing well managing the pain, weakness, sluggish thought processes, and vision difficulties. The next minute I may need to climb into bed and be unable to move for hours. I am not being lazy. I’m taking the rest my body needs in order to function. You have to remember, it’s fighting every second of every day just to survive.

3. Things will get worse

I know you think that’s not being positive enough, but no amount of not talking about the truth will help others (or even myself) come to terms with my reality. MS is progressive. That means that as time passes, symptoms will build and my life will become more difficult. I need to prepare for the possibilities of tougher times so I’m not caught off guard when they happen. Help me to not allow my difficulties to be the only thing I focus on, but allow me the space needed to face the truth.

4. I need help

Just because I don’t ask for help every time I do something doesn’t mean I don’t need it. From my perspective, I see the burden I have become on others and know that in the future it will be an even greater need. I also know that I can’t give back like I could in times past. Those thoughts weight heavy on me at times. Regardless, never stop asking if you can help. Just the asking makes each day better because it shows me you care.

5. Please invite me

I know I am limited in the places I can go because I have to ensure accessibility and that it’s not too late or I’m not too tired, but please don’t decide for me if I can join you for a time out of the house. You may hear “no” more times than yes, but I feel included when you ask.

6. Little things matter

I know it may sound silly, but a text asking how I’m doing or just to say “thinking of you” makes any day brighter. So does picking up the mail, dropping off a meal, doing a load of laundry, taking out the trash or just sitting for a chat. Those things matter more than you will ever know.

7. Don’t get offended

I have a brain that can’t keep information in order. If I don’t remember a special date, have trouble putting words together into coherent sentences or I’m not engaged in a conversation, don’t hold it against me. Most of the time it’s difficult to keep things organized in my head. Even with lots of notes and reminders I still confuse things.

You’re going to make it

I’m starting to get used to a life of change. Don’t you just hate it when “normal” keeps changing on you? My normal today is drastically different than it was last year at this time. Comparing milestone markers in my life by looking at my progressions from year to year, and sometimes month to month, is the only way I can actually determine just how much my disability is changing.

For me, last year at this time my legs would still function a little when I would do the ever so popular furniture walk. (That’s where you walk from one piece of furniture to another using anything you can grab hold of as a support.) My grip strength was much better then too. Thankfully the tremor in my right hand has subsided a bit, but it’s still there and ever so annoying.

Now my voice is softer, my thinking slower, pain has increased and sleep is difficult. I have a tube coming out of my belly attached to a urine bag since I have lost control of the muscles needed to empty my bladder by myself, I no longer wear an AFO brace on my right ankle since the drop foot has shifted to being stiff rather than floppy, and my breathing is shallower but still going strong. I’d say that’s a lot of change.

But looking back over my life, change has always been happening…even before multiple sclerosis came into the picture. Seasons change in our lives and what we considered normal changes right along with it.

No matter how much change has been happening, I have made it this far in life because I hung on even when I wanted to give up. Look back at all you’ve been through then give yourself a giant pat on the back, high five or hug for sticking it out too. You have pushed through some truly difficult and impossible times.

I always think of Florence Chadwick when I feel like quitting. In 1952, she attempted the impossible. She stepped into the waters of the Pacific Ocean off Catalina Island determined to swim to the shore of mainland California. She was already the first woman to swim the English Channel both ways, so surely she could do this.

The weather was foggy and chilly making it hard to see the boats that were accompanying her. Fifteen hours she swam, stroke by stroke, exhausted and only able to see a few feet in front of her. She begged to be taken out of the water.

Her mother, in a boat alongside, told her she was close and that she could make it, but being both physically and emotionally exhausted, she stopped swimming and was pulled out. It wasn’t until she was on the boat that she discovered the shore was less than half a mile away.

At a news conference the next day she said, “All I could see was the fog…I think if I could have seen the shore, I would have made it.”

Can you relate? Sometimes I feel like giving up because I don’t have the strength to move forward, not even an inch. I can’t see where I’m headed and I am exhausted, weary and just completely worn out.

I didn’t ask to be a part of this fight, this struggle in life. But you know what? Each day I still come up swinging. Sometimes I get knocked out even before stepping out of bed, but I keep fighting anyway. You have to do the same thing. That’s what warriors do. And believe me, you are a warrior.

If today is a difficult day for you, remind yourself of how far you’ve already come. Stop looking at how far you still have to go or the fact that you can’t see the finish line. The important thing is that you are moving forward…even if it is only at a snails pace.

You are conquering today one moment, one step, one stroke at a time. And that my friend, is amazing!

I don’t forget things on purpose…it just happens

Last night I opened a candy bar and for whatever reason I set it down on my lap, got myself comfortable in bed, then forgot to eat it. What? Who opens a wonderful, delicious, amazing candy bar and forgets to eat it? ME, that’s who!

At around 3:30 AM I woke up and could smell chocolate. I didn’t quite know what to think as to the reason why. Still no recollections of the candy bar. I used my hands to help shift my body to a more comfortable position and it was then that I felt something strange. There were crumbs in my bed.

At first I didn’t know what to make of it. I don’t usually eat in bed so I knew it couldn’t be cracker crumbs. Maybe dirt transfer from working in the garden. Hmm, not sure. I turned the light on, pulled back the covers and then I saw it. The chocolate bar that I had opened earlier was mostly melted all over me, my PJ’s, sheets, and what wasn’t melted was now chocolate crumbs all around.

I ended up spending a few hours this morning washing a load of laundry, washing myself and carefully cleaning the floor where a few pieces of chocolate had fallen then melted in place. I have had some doozie moments with my memory like forgetting appointments; not remembering to reply to emails; forgetting names, words, TV shows I’ve already watched, and even things like what month it is, what day it is and why I went into the kitchen, but this is a first for me.

I use the calendar on my phone for reminders all the time. Am I going to have to start setting a reminder now to eat?

One good thing for today, I now have a freshly made bed that is so inviting I’m tempted to climb in and go back to bed for the day. It’s going to rain a little bit later anyway. Rainy day always help me sleep.

Oh, wait, according to my calendar I have to make a trip to the grocery store for some coffee, soup and BBQ sauce. Why BBQ sauce? I don’t know, but it’s on my list. I’ll remember later what it’s for so I better pick some up.

Now if I can just figure out what I did with my phone. It was sitting next to me a few minutes ago. Ugh…such is my life.

Try walking in my shoes before judging how I live

I wear shoes most days. Although I still prefer my barefoot moments, protecting my feet is way more important these days especially since I don’t have much feeling in them anymore. You’d be amazed at how many times I still bump my feet throughout the day from a wheelchair. My driving skills aren’t always that great, just ask the walls and doors.

My everyday shoes are a bit worn and scuffed even though I don’t walk in them any longer. I have been many places with them on my feet. If they could talk they would tell of things like how I once went to a surprise party to celebrate my birthday. I shed tears of joy that day and had a beautiful night filled with laughter and dancing. I felt unstoppable and on top of the world.

They would also tell of the day I went to the doctor’s office for tests because I was having a hard time walking, seeing and feeling parts of my face. That day was a day of tears too, but of sorrow not of joy. It was a day I wish I didn’t have to go through, but my shoes were with me and walked me down the sterile hallways of the hospital into the unknown. They saw my pain and felt my discomfort as a diagnosis of multiple sclerosis was made. If only they could talk.

No one has ever walked in my shoes. I doubt they could fit in them even if they tried. I think my shoes are a little like Cinderella’s…you know, how out of everybody in the kingdom, no one had a foot her size or could fit into her lost shoe. It’s amazing how not even one person could wear her shoe. It was unique to her.

I’ve heard it said that you can’t know someone until you’ve walked a mile in their shoes, yet for all the times I’ve heard that said, I don’t think I’ve ever seen anyone actually doing it. Could you imagine a football player with a ginormous foot walking in a dainty girl’s shoes that were two sizes too small…for an entire mile? I doubt he would make it a few feet (no pun intended) let alone a mile.

People like to throw out opinions of how we should live our life and what our journey should look like, but in actuality, they don’t know the road we have to travel. Don’t allow someone to judge your pain or your response to the difficulties in life while standing in their own shoes, not once putting them aside to even try walking in yours first. They can’t know your pain, sorrow, happiness, joy, ups, downs, depression, heartache…they can’t know your life if they aren’t willing to set aside their own judgments to consider what your life is really like.

We each have our own journey and our own shoes to wear. When you put your shoes on today, remember how far you’ve come and the miles you’ve already been. Each scuff mark is a story of trying. Each smudge is a part of not giving up. And know this…your journey isn’t complete yet. You still have many, many miles to go.

It’s not your fault

I don’t know why people like to point fingers when something goes wrong. It seems like a common occurrence these days. If I was to drop my ice cream cone on the ground, even if I was super careful while holding it, I could blame the cone creator for making it too tall, or the weather for being too hot, or the wind for blowing just right, or a barking dog for distracted me.

So many factor could be the cause, but does it really matter why it fell? Is that going to make the ice cream jump up from the ground and land back onto the cone for me to enjoy? Or, should I simply be thankful that it didn’t land on my best leather shoes permanently staining them with chocolate fudge and caramel?

Can we accept what has happened with an attitude of “it is what it is” and move on? No blaming, no finger pointing, no scientific calculations of wind velocity vs. walking speed, just it fell and oh well.

I know when it comes to multiple sclerosis people like to point fingers at something or someone as to the cause. I have heard many crazy as well as plausible theories myself. Maybe you’ve heard some of them too. Things like…

“You have metal fillings in your mouth. I know that’s what causes MS because I read this blog on the internet about it.” Well, I don’t have any, so I guess that one’s debunked for me.

“You must eat a lot of artificial sugars like aspartame. That’s why you have MS.” Well, I don’t. So, hmmm.

“You don’t get out and exercise like I do, after all I’m out running, biking and hiking every weekend.” That’s another no-go since I exercise daily. Just because I can’t do the conventional exercises doesn’t mean I’m not working out.

“You don’t have multiple sclerosis at all. It’s actually Lyme disease or it’s just all in your head.” Another conspiracy gone awry.

Many others have shared stories with me of what people have told them as to why and how they got MS. It’s frustrating for a person with MS to have people flinging around unfounded statements just because of hearsay or something they read on the internet when the fact is no one really knows what causes MS.

Theories and opinions run rampant online, but that’s all they are at this point. And a majority of them have a tendency to do more harm than good in a person’s life. Someone going through the struggle of  living a life with a chronic illness feels bad enough already…piling on some sort of guilt trip and blame, now that’s a double whammy.

Once someone is diagnosed, do the how’s and why’s really matter anyway? Shouldn’t the focus be on today rather than yesterday? Yesterday can’t be changed…but there’s a whole lot that can be done with today.

I know many of you blame yourself, but you have to know that you didn’t cause MS. It’s not your fault. It’s not like you woke up one morning and decided you wanted to get a chronic illness. You didn’t do anything wrong, so don’t listen to those thoughts. They are lies and lies aren’t worth any of your attention. For whatever reason, it chose you, and regardless of what you think I know you are strong enough to handle it.

You may not feel like it right now, but you will make it. You are brave and even brave soldiers stand in the middle of a battle with knocking knees! It’s okay to be afraid, just don’t let that fear paralyze you and stop you from facing the day. You can do this. Today is a new day and tomorrow is full of possibilities.

Things people say to someone with Multiple Sclerosis that make you go Hmm…

Those of us living with Multiple Sclerosis get interesting responses from people when they find out we have been diagnosed with MS. I actually think most people mean well, they just don’t think before they speak.  It can be frustrating, I know. Hopefully the more we talk about these things the more people will learn that we need care, understanding and support more than anything else. People really do say some on the darndest things…

1. You need to be more positive. You would get better if you had a better attitude.

2. You shouldn’t drink coffee, cola, wine or really anything except filtered water.

3. I read about this diet that cures MS, why aren’t you on it?

4. You should be eating gluten free. Gluten is your problem.

5. Are you contagious?

6. You need to stop eating meat.

7. What did you do wrong to get MS?

8. I heard a vaccine causes it. You shouldn’t have gotten that vaccine you had when you were 2 years old.

9. You need to get out of the house more.

10. What about that celebrity with MS? He’s fine…why aren’t you?

11. Have you Googled MS?

12. Why don’t you try a different medication? Something that doesn’t have as many side effects and that stops MS?

13. But you were fine yesterday.

14. Are you sure you have MS? I think it’s all just in your head.

15. You should join a fitness club. Exercise is all you need.

16. It can’t be that bad.

17. You don’t look sick.

18. Oh, my aunt had that and she’s fine now…or dead, I can’t remember which one.

19. Trust me, I know EXACTLY how you feel.

20. Stop using MS as an excuse. You are just trying to get out of work.

21. Try this supplement…it helped my cousin’s uncle’s sister’s friend who has MS.

22. You’re just stressed.

23. Have you been tested for Lyme Disease? That’s really what you have. MS doesn’t really exist.

24. There’s a trial medication out now, why aren’t you on it?

25. Why are you so tired? You can’t be THAT tired, you slept all day yesterday.

26. You’re just not doing everything you can do. You must not want to get better.



How embarrassing…

Some of my most embarrassing moments with multiple sclerosis have been bathroom related. It’s not always easy to talk about the challenges I face on a daily basis when it comes to toilets, toilet paper, and accessibility. It’s not like I can just start a conversation, “You wouldn’t believe the mess I made in less than 10 seconds flat yesterday.”

The muscles that control my bladder and bowels simply don’t work for me. No matter how hard I try, my brain will not communicate to that area of my body. Believe me, I’ve tried. A few years ago I had a suprapubic catheter surgically inserted to help with my bladder issues. It’s a catheter that is inserted in my belly and attaches to a urine bag. So basically, my bladder is an external bag that I have to periodically empty in the bathroom throughout the day.

That is one of the best things I have ever done in my MS journey. It’s not maintenance free and comes with it’s own set of challenges, but at least I don’t have the unexpected accidents like I did in times past. The only time I have bladder leakage now is when I have a kink in my catheter or have forgotten to empty the bag in time. Even with an external bag, that can happen.

I used to tell people that my bladder and the front door conspired against me on a daily basis. Every times I would make it home after I had been out, as soon as I got to the front door to unlock it, my bladder would no longer hold things in. I can’t even count how many times I had to take a shower and wash a load of laundry after I got home.

Now, my bathroom accidents mainly happen due to my bowels and me not getting to the toilet in time. The problem for me is that since those muscles are not working, I can’t flex or constrict them to help hold anything in. I get at most 30 seconds to make it to the bathroom, pull my pants down and sit on the toilet, and many times I don’t quite make it.

One thing is for sure, my abs always get a workout when I finally make it on the toilet since those are the only muscles I can still control. I should have washboard abs by now.

Is that TMI? It may be for some people, but I think open and honest conversation is always best. It helps both those with MS and those caring for someone with MS.

When I am out of the house, bathroom location is the first thing I think about. I want to know where the closest ones are and if they are wheelchair accessible. And just in case I don’t quite make it, I also keep a change of clothes with me for those unexpected moments.

Hey, s*** happens and most of the time I have no control over it.