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

When taking a shower hurts

There are times I wish everyone would just go away and leave me alone so I can clear my head and distance myself from all the drama, arguments, pain and chaos in the world; to find such a place where I can cry as much as I need to and let out a scream or two from time to time—even if only for 5 minutes.

It’s not always easy finding that perfect spot. The place where no one else is hanging around to judge you for simply being you. For me, that place just so happens to be in my shower. Somehow I am able to have my own crying party in the solitude of the bathroom away from the world as water gushes down my face. It just seems easier to think and cry in the shower. I have washed many tears down the drain in my lifetime.

Lately though, showers haven’t been so freeing. This may sound weird to some of you, but much of the skin on my face, arms and legs have become so hypersensitive that even water hitting me from the shower head hurts. And when I say hurts…I mean HURTS!

I’ve been pointing the shower head to the side wall and filling a large cup with water to rinse the shampoo out of my hair and off my body. It makes bathing a bit more complicated, but if I don’t want to smell like a skunk I have to change and adapt to the strange things multiple sclerosis does to me.

It seems MS is good at making simple things, complicated. Who would have guessed that clipping your fingernails could become a near impossibility to accomplish all by yourself? Or that things like signing a check, picking up the mail, vacuuming, getting dressed, or even brushing your teeth require more time, energy and help than ever before?

I never really thought about doing those things in the past. I just did them without realizing how much I was truly taking for granted. But today, many things have become a challenge for me to complete. It’s as if each day, as I pull back the covers to get out of bed, I start my journey to the top of Mount Everest. I don’t always make it to the top as the day comes to a close, but I press on anyway.

Multiple Sclerosis is the disease that keeps on giving and taking away. If you ask me, it’s pretty selfish. But regardless, I refuse to let it limit or define me.

REMEMBER: You have this terrible, often times debilitating, disease called Multiple Sclerosis and it’s trying to take over your body, your life…but you are not MS. You are an amazingly courageous person that can still love, dream, laugh, and hope for a better tomorrow. I’m loving, dreaming, laughing and hoping with you.

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.