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.

Real friends

Living with Multiple Sclerosis will weed people out of your life

One thing multiple sclerosis has done for me is weed out the people in my life that were only there for the ride, not the journey. So many times people proudly boast about the great numbers of people they know, but are those people really friends? I can almost guarantee you that a majority of them are what I would consider fair-weather friends.

I’ve noticed that people seem to be great at hanging around when they are getting some type of reward or kick-back for being your friend. You know, the free food, tickets, perks, support that you are able to send their way, but when those things dry up and you become the one in need of their continued help, they suddenly have other things more important to do.

Life has taught me a few things—I guess you could say the hard way—about people. I have learned what true friendship is…and is not.

A friend is not…

  • the long list of people in your High School year book.
  • the person who friended you on Facebook, followed you on Twitter or added you on Instagram.
  • someone who attended your birthday party or says hello to you in passing at the office.
  • the person who gives you a piece of gum or hangs out with you at the mall.
  • someone who waves at you from across the room, bags your groceries or invites you to their wedding.

A friend is…

  • someone who is willing to go grocery shopping with you on the coldest, rainiest day of the year and allows you to change your mind ten times about which kind of cheese you want for sandwiches.
  • someone who puts up with your moodiness, hangs in there through the tears and listens when there’s nothing left to say.
  • someone you can call up at 3 o’clock in the morning to take you to the emergency room or help you with a flat tire on the side of the road.
  • someone who holds your hand when you get a bad doctor’s report and who never judges you when you have a melt down.
  • someone who genuinely wants to know how you’re doing.
  • someone who never walks away.

A friend isn’t the person who SAYS they are your friend, who SAYS they want to help, who SAYS they will be there come rain or shine…they PROVE it by the things that they do.

I hate to admit it, but I know I have become less of a friend in return for many of the people in my life mainly because MS has exhausted me both emotionally and physically to a point where I don’t have the energy to maintain forced interactions or unnecessary conversations.

An exhaustion so deep that I don’t have the strength to hold someone else up without sinking myself. I’m at a place in my life where I am the one in need of support. A true friend will understand that and choose to stay anyway.

Hang on to those true-blue friends. You won’t have many…maybe one or two, but they are worth their weight in gold.

Living with multiple sclerosis will weed people out of your life, but in the end you will be left with the beautiful roses, orchids and daisies. Treasure the people that treasure you.

When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares. ― Henri J.M. Nouwen

you are

You are a somebody

I had an extremely difficult time watching my career come to an end. It was the last thing I ever thought would happen, so when it did I took it hard. I did all I could to hide my cognitive problems from others. I fumbled my way through each day knowing that life was changing yet refusing to acknowledge those changes.

As a computer programmer, I could meet any challenge thrown at me and beat it. I developed some amazing systems and was proud of my accomplishments. When Multiple Sclerosis came along and began disrupting those abilities, I didn’t like it one bit. I would try programming but just couldn’t get my brain to work.

I struggled with everyday things too like trying to remember if I had washed my hair while in the shower, so I would wash it again just in case or forgetting I had something in the oven even with a timer set. Who could burn a casserole with a wonderful smell filling the house and a timer going off? Me!!! So, to get confused looking at code, the very code I, at one time, could decipher in my sleep…that was devastating.

The day I made my decision to resign, I cried. Not just one tear either, a flood and an ocean of tears. I covered it up well, but my heart was broken. Having to walk away from my job made me feel like a failure.

It’s been close to three years now and I still miss my job. I find myself trying to do in depth programing from time to time, but can’t seem to do it without a cheat sheet for even the simplest of tasks. I’m still smart, I’m still me…I’m still a somebody.

I do my best to stay focused on the big picture. My career wasn’t who I was. It was only a part of my life. I am so much more than the things I can do…and so are you. For some reason, we put our identity in things that don’t really determine who we are. You aren’t a chef, or a fireman, or a store clerk, or a nurse. You are an amazing, wonderful, strong, inspiring person who has a lot to give even in your weakest moments.

I know it’s scary, the unknown. “How will I? How can I? What about? What next?” I know, it’s terrifying to take a step forward when you can’t even see the road in front of you. But regardless of how you feel, I can tell you with confidence that you aren’t a failure, stupid or broken. You are a somebody…and being a somebody is the best thing anybody could ever be.

When you have to think to swallow…

One of the scarier moments for me in this life with multiple sclerosis is when my throat closes up and refused to allow me to swallow. Many times I have to actually convince those muscles to actually function. Last night was one of those times.

I had water by my bedside, elevated the head of my hospital bed, reached over for my cup then took a sip. I held that water in my mouth a good two or three minutes as I tried to swallow. At one point I even thought about spitting it out but eventually was able to get it down. The harder times is when it goes down the wrong way and I end up having a coughing fit.

And people wonder why we are always so exhausted. Maybe it’s because we have to work overtime all day long in order to do the things everyone else takes for granted. When you have to think to walk, think to swallow, think to remember words, think to even scratch your nose…well, that’s a lot of exhaustive thinking and would wear out even the healthiest person around.

I wish there was a switch I could flip to make my muscles work as they were intended or a program I could write to override the glitches in my system. That would make my days so much easier to manage and would be a welcomed improvement.

My morning coffee is not as enjoyable as it used to be but I still make myself a cup each morning anyway. Sometimes I don’t get it all down and end up pouring half of it down the drain…but sometimes I don’t. This morning I finished my cup and for that I’m thankful. It’s the little things in life that really matter anyway.

Life has drastically changed because of multiple sclerosis but I will never give up looking for rainbows in the chaos. This morning I found a rainbow in my coffee cup, tomorrow maybe I will find it in the laundry. Hey, anything’s possible!

To whom it may concern: Advice to the world about life with Multiple Sclerosis

To whom it may concern:

There is an entire world filled with people who don’t understand Multiple Sclerosis. I know since you don’t live with the disease yourself it is hard to comprehend, but I hope what I have to say will give you insight into what life is like for me…giving you insight and understanding into the life of someone living with MS.

First off, I would like to say that Multiple Sclerosis is real, it hurts, it is full of challenges and struggles, and if you haven’t figured it out yet, it is invisible to a majority of the population since the destruction takes place inside the body. The effects are seen in other ways as I walk, talk and go through my day with disabling symptoms, but if you were able to see inside my body, you wouldn’t judge me so quickly. My insides are a wreck and filled with chaos.

Sure, I wear a smile much of the time, but that doesn’t mean the disease isn’t there. It just means I’m doing a pretty good job at covering it up. You see the mask I wear, but let me pull off the mask for a moment. I get angry, fearful, weepy and scared. Lingering in the back of my mind is the fact that one day my future will be drastically different than it is today. You see, MS is progressive. That means that although today I may be moving around okay, tomorrow I may not. It may take a year or 20 years, but my life is changing every day.

Please know that it hurts when you so casually decide you know what’s best for me. MS has affected every part of my life, but that doesn’t mean it’s made me incapable of making decisions. Don’t exclude me from things just because you think I wouldn’t want to be a part or because you think it would be too hard for me to do. Let me make that decision. It hurts more to be left out than to give a response of “no thank you” to an invitation. I would much rather be given the option. Please don’t stop inviting me or including me even if you get a lot of “No” replies.

Another thing that really hurts is when you tell me you know how I feel. Really? You understand the fatigue that never goes away, the numbness in my body, the pain, the bladder problems, the vision struggles? I have major damage in my brain and spine causing continued chaos throughout my body, and you want to try and compare your flu symptoms to my MS? Please don’t do that. Unless you are living with MS yourself, don’t even try telling me you know how I feel. Support me, help me, console me if that’s needed, but don’t make the assumption that you get it.

Then there’s the problem I have of you always trying to fix me as if I’m broken. I’m not broken. I’m simply living with a chronic progressive incurable disease. That means it’s not going away unless a cure is found…and no, there isn’t a cure yet. All those supposed cures you read about online, they aren’t cures. They are either symptom management techniques, wishful thinking, or money making schemes. Nothing has been found to completely remove MS from someone’s life. Nothing aside from a miracle! So your great Aunt Sue’s cousin’s friend who was cured using a combination of bumble bees, tin foil, baking soda and pine cones…I’m not interested in the recipe. Accept me for who I am. I’m thankful you care, but your remedies cause me more weariness than help.

Something else I’d like to say…for some reason you have this need to ask me if I’m feeling better every time you see me. As I’ve said before, MS is progressive so that question truly has no answer. Feeling better than what or when? Yesterday? Ten minutes ago? Last year? Instead of always asking me if I’m feeling better, treat me like everyone else. There are more things to talk about in life than my having MS. I don’t want that to be the center of conversation every time we meet. I am more than my MS. I am still me and would much rather talk about gardening, traveling, architecture or the funny thing I saw yesterday on the side of the road. Don’t ignore my struggle, but don’t make it a continual focus either.

Please know that I have my bad days and at times terrible, horrible really awful days. Getting out doesn’t make them better either. In actuality, going out has the potential of making them worse. Me doing more will not make my MS symptoms less. Yes, exercise is important, but it has to be done carefully. That old saying “no pain, no gain” will not work for me. If I get to the point of pain, I have pushed too far and my body is going to rebel for days, if not weeks. I have to do everything carefully and with great planning. Sometimes my bad days happen within minutes of a good moment. That’s just how rebellious my body can be. So please don’t tell me I need to get out more or I just need to lose weight to feel better. That’s not the cause of my struggle and it is not the answer to my pain.

So, the next time you decide you want to judge me for my bad days, bad moods or even my bad responses to your insensitivity, keep these things in mind…

I am the same person I was before my MS diagnosis. I am intelligent, caring, full of fun, loving, ready to laugh at any given moment, and a great friend. I also have the potential to be angry, moody, and frustrated. All still part of who I am. I would like nothing more than for MS to be cured, but as of today that reality doesn’t exist. Please don’t look at my disability as if that’s all that I am. I am still me…MS and all. The only difference is that I need a lot more love, support, care and understanding. I would much rather have someone fighting alongside me than against me.

Signed,
An MS Warrior
(Penelope Conway, Positive Living with MS)

P.S. Please share this with your friends, family, co-workers, and neighbors. Multiple Sclerosis awareness is needed all around the world.

Don’t quit…not now, not ever

Have you ever felt like your whole life was falling apart before your very eyes and no matter how hard you tried you couldn’t do anything to stop it? That the very ones you thought would stand beside you forever turned and walked away? That in each passing day a wave of hopelessness flooded your heart and clouded your mind, inching you closer and closer to simply giving up? That just the thought of facing one more day filled your heart with tremendous pain, fear and too much uncertainty to manage?

If you have ever felt this way before, just know that you are not alone. I have been there too.

People who know me, know that I’m not a quitter…I never have been. I face everything with the confidence that I will overcome. But there have been times when I’ve felt like giving up and waving the white flag of defeat. I’m not immune to having the feelings of being overwhelmed, weak and uncertain.

I read a story once about Emperor Tamerlane who was badly defeated in battle. He ran from the battle and  hid himself away in a barn. Enemy troops searched the countryside for him. By this time he was depressed, his troops had been terribly defeated and scattered, and he didn’t know what he was going to do.

It was then that he noticed an ant trying to push a giant kernel of corn up over a stone wall. As he watched this ant attempt to do the impossible, he counted its futile efforts to see how many times the ant would try until it gave up.

One, two, three… twenty… forty… sixty-nine times the ant tried and failed to push the kernel over the wall. But in one last push, on the seventieth try, the ant made it. Leaping to his feet, Tamerlane excitedly said to the ant, “If you can do it, then so can I.” That day he changed his outlook, reorganized his forces, went back and defeated the enemy.

I wish more people understood that every day living with multiple sclerosis I am attempting the impossible, and just like that ant I fail more than once…but I don’t quit. I push, get exhausted, try again, fail, rest, but still get up and try some more. My entire life seems to be one giant push. I push through pain, weakness, dizziness, blurred vision, muscle spasms, and lack of sleep. I push and keep on pushing at everything I do. Nothing comes easy, not even something as simple as a trip to the mailbox.

Sometimes each one of us needs a little ant to remind us that we can do it. That this fight is worth it. That we can make it. Today, let me be that ant.

Don’t quit. Don’t let the fact that MS is a part of your life cause you to feel defeated. You can’t stop trying. You can’t stop pushing that kernel of corn. Don’t let MS win. You got this…now PUSH!

Multiple Sclerosis makes life hard

Lately it’s been extremely difficult getting my body going in the morning. Now mind you, I’ve never been a morning person, but this kind of slow going is different.

For instance, take this morning…I woke up and lay in the bed a good hour just contemplating getting up. I didn’t throw the covers back immediately as if ready to conquer the day like I have done countless times before. It felt more like the day had already conquered me, and I hadn’t even gotten out of bed yet.

The energy it takes for me to move my legs, let alone use them, seems non existent. I can usually take about 5 steps before needing a break, but even one step seems impossible today. I can’t even talk them into moving across the mattress on their own.

My hands aren’t cooperating either. I’ve punched myself in the face twice already just pulling on my blanket. Then there’s my uncontrollable right hand which has a mind of its own as it shakes and jitters about.

As I lay here in bed, in my mind I have already canceled all of the plans I have for the day.

That trip to the store, it can wait until tomorrow. That dirty bathroom, it will just have to clean itself. Laundry? That’s a nope. My morning get together with friends, it will have to go on without me. Even getting my morning cup of coffee has been put on hold.

I am not a quitter but I have to admit, sometimes my body wins the argument before the argument has even begun. Sometimes my inability to do certain things is not a mind over matter concept but more of a what’s-really-important kind of thing.

I have simplified my life and my surroundings all because of multiple sclerosis. It kind of has this way of weeding out the unnecessary in life…whether that be things or people. But you know, that’s not really a bad thing. As least I know that the people in my life today are genuine and real.

MS may get me down, and at times keep me down longer than I would like, but it still hasn’t won. I am going to keep pushing through the struggles I find myself facing, and if need be I will pause for awhile to catch my breath, but I won’t quit.

MS makes life hard, makes everything hard, but don’t ever let it cause you to give up. You are too valuable, too important, too needed, to quit. Pause, take a breather, nap if you must, but never, ever, ever give up.

Today for me may already be cancelled, but it’s not over. There is still a lot of time to do the impossible. The same goes for you. You can’t give up now.

sad

It’s true…Multiple Sclerosis is painful

Living in a constant state of pain is grueling, exhausting and tough…really tough. Someone who hasn’t been in that position will never grasp how difficult it actually is to function during a time of blinding pain, no matter how much you try to explain it to them. There is just no way to put that kind of thing into words.

When pain becomes that overwhelming, you find yourself creating your own methods of mind over matter to try and cope. Sometimes they work, but sometimes the pain becomes so intense that you can’t seem to find any coping mechanism to bring relief. That’s when the tears flow, the mood swings happen and you pray with all the strength you have left inside of you hoping that everything will simply stop spinning out of control.

That has been my world these past few days. The pain has been so intense that I found myself hibernating…more for my own sanity than anything else. I know my fuse can be short when my body is screaming at me with that much intensity. I wouldn’t want anyone to be on the receiving end of a faulty mood swing during an I’m-trying-to-cope moment in my life.

Now don’t get me wrong, I truly am a wonderful, nice, calm person…but when I’m hit with excruciating pain that just won’t let up or stop, the monster hidden deep inside of me rises up. I would never be cruel, but I am more apt to say something that might hurt someone’s feelings.

Anyone who says that people living with Multiple Sclerosis don’t experience pain, is full of it. Oh, how I would love to give that person a glimpse into just how painful it can be.

But you know, although the pain is horribly unbearable, I find that somehow the strength I need to push through during those times comes. I eventually get through it and I gain deeper compassion for others facing similar times of pain in the process.

Before MS, I really didn’t get it. Life wasn’t as meaningful or as precious to me as it is now. I took way too many things for granted: people, a good job, strong friendships, laughter, and the freedom to do just about anything I wanted to do.

Now, because of Multiple Sclerosis, I live my life in a constant state of uncertainty and pain. Physical pain and emotional pain. Yet now I find myself savoring every memory and moment I have…even the painful ones. I no longer take life for granted. I value each day, each sunrise, each raindrop, each tear.

There’s no time for petty arguments or silly whining. There’s no point in trying to one up someone just to make myself feel important. There’s no need for meaningless relationships or power struggles. Each moment I’m given, each person I meet, they’re a gift I’ve been given and something I shouldn’t waste or toss aside.

Savor life. Enjoy every moment. Live today regardless of how terribly tough it may be. You are here, alive, for a reason. You matter. You have a purpose. You are loved, valuable and someone that I’m thankful to call friend.

You are a survivor and a warrior. You are truly an amazing person. Never forget that, even in the pain.

bear

I never asked to get sick

For so many, Multiple Sclerosis is filled with times of intense struggle followed by periods of calm. During the calm a new normal is found that consists of changing how everyday tasks are done and limiting those things that are not as important. Meds, vitamins, diet, exercise, and working to stay as stress free as possible helps to manage the symptoms and life goes on. Years pass by. Relapses happen and with each relapse a new normal is found and the process continues.

I wish I was one of those people. I wish I could say, like so many do, that I have had MS for 20 years and am still going strong or that it’s been 10 years and my symptoms are still the same, but I have never had a period of time when something wasn’t changing. I’ve never really known a relapse. MS has been fast progressing and aggressive for me. I know I’m part of a smaller population of MSers, but I think it’s important for the world to know that not all MS is the same.

Sure, I am encouraged by the stories of people with MS who advance in their careers, run marathons, and are seen on TV giving a face to MS. What bothers me are the numbers of people that think MS isn’t that bad, after all just look at so-and-so on TV or watch this video I saw of how someone follows a special diet and now lives symptom free.

We have done a fairly good job at informing the world that MS exists, but not so good at explaining that it can be cruel, painful, debilitating, and that a cure has not yet been found. Yes, I agree that not everyone will end up in a wheelchair unable to manage life on their own, but it happens and we have to be sure we are sharing both the good and the bad with the world so they know the truth and not just the positive, brave side we like to portrait. Being positive doesn’t mean denying what is going on in your life and hiding those things from others. It’s acknowledging the ugliness of MS and choosing to push through anyway.

I never asked to get sick, to have to quit my job, to live day by day with struggles. That was never a part of my long term goals in life. I work hard every day to stay positive, encourage others and even encourage myself. But you know, some days I have to talk myself into getting out of bed. It’s true. I have even been known to argue with myself as I work up the strength to get a shower to start my day.

It’s hard. But even in the impossible, I see good things around me. I see people smiling because I said something funny. I see strangers extending a helping hand when I’m struggling to get the door open or needing help to get something from the top shelf. I see love in action and joy in some of the strangest moments.

No matter how difficult your day is, look up from your struggle and take a deep breath. What are some things in life that make you smile, that warm your heart, that bring you joy? Hang on to those things today. It won’t make the day easier but it will make the load lighter. MS is different for everyone, but pain is pain, struggle is struggle, change is change. Today is not a “give up” day…it’s a “get up” day.

You are not alone

A life with Multiple Sclerosis can be a physically challenging, emotionally draining, round-the-clock exhausting and lonely job. Everything we do takes an extraordinary amount of effort to complete and some things become nearly impossible to do causing us to get really creative in finding an alternative to our otherwise normal way of doing things.

I want you to know that no matter what you are facing today or how difficult things become tomorrow…you are not alone! There’s an army of us warriors standing shoulder to shoulder, together in this fight.

If you cried in the shower this morning because you were so unbelievably overwhelmed with the load you have to carry and feel as if the whole world has flipped upside down, inside-out and turned up on its end…you are not alone. Somebody else cried, too.

If you find yourself staring at piles of laundry, a sink full of dishes, shoes tossed in the hallway, unmade beds, dirty toilets and are fighting the guilt of the day coming to an end with everything still in the same place it was when you woke up…and then you find yourself wondering “what did I do today?”…you are not alone. Somebody else wondered, too.

If you miss running with your kids, attending graduation parties and baby showers, standing in long lines waiting for tickets to the best show on earth, and joining in on all the fun everyone else seems to be enjoying…you are not alone. Somebody else misses it, too.

If you woke up exhausted after a full night of rest and are trudging through your day longing to go back to bed so you can sleep just a little bit longer…you are not alone. Somebody else did, too.

If you wished you could still be part of the buzz around an office, the business of deadlines and bad morning coffee, cranky bosses, nosey employees and water cooler gossip…you are not alone. Somebody else wished, too.

Maybe not every person’s experiences with MS are the same and the difficulties you face are different from mine, but I am convinced there is someone, somewhere in the world who is going through the same overwhelming moments as you. Just because you don’t hear about them or know them personally, doesn’t mean they don’t exist.

Keep hanging on. It’s okay to feel like you’re falling apart because in many ways you are…well, your nerves are so I guess that’s the same thing since they are a part of you. Eventually things will get better and you will find ways of coping with all the changes. I can guarantee you that.

Right now the days may seem long and the pain may outweigh the joys. It’s tough…I get it, but it’s not impossible. Let’s carry this burden together. Let’s offer a listening ear, a gentle hug or a nod of understanding to those beside us. We need each other. That’s how our strength grows.