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

Sometimes multiple sclerosis wins, but not today

What a tough week so far. I just woke up for the day and here it is 9 AM. That is just so not like me. Normally I will not sleep well through the night and yet still be awake by 6 AM. I tossed and turned though the night listening to a thunder storm (which actually for me is quiet soothing). I’m glad the last few hours that I spent in the bed this morning were actually spent sleeping…I think.

I have felt so much weaker these past few weeks. My body won’t cooperate and my brain seems to have gone on vacation. I don’t like feeling out of control like that.

That’s one thing multiple sclerosis does…it takes away your ability to control much of your life, but at least the things I can control, I’ve got. I can still laugh, smile, find enjoyment in life, cry, worry and wonder about tomorrow.

I often think about where life is heading for me and it does concern me if I allow myself to stay in that place for a long enough time. You can’t do that. Yes, acknowledge the reality you are facing. Yes, allow yourself to go through times of worries, fears and doubts. Yes, give yourself time to grieve if you need it…

But then you HAVE TO shake off the weighty negative thinking and face the day you have TODAY. You only get one today so make it count.

It may be a tough day to handle…but you are tougher than any of the things happening around you. You didn’t ask for this life. You didn’t ask for the struggles, the pain, the storms. You didn’t ask for MS, but since it’s here choose to keep pushing through all the crap that comes with it and find something good to hold on to. There is good in today. You can’t give up on being able to find it. You can’t let MS win.

Keep searching. Keep going. Keep pushing through. I believe in you!

Dear Weary One…

Dear Weary One,

I know your heart is heavy. Right now you are on the verge of tears…tears that have been collecting deep in the spaces of your heart and flooding over into your mind. You have met reality face to face and you don’t like it one bit. Multiple Sclerosis is your reality. It’s real and you feel it deep.

Many times you find yourself overwhelmed and challenged in areas of your life that you never thought challenging before. You feel the weight of simply making it through today to be daunting as laundry piles up and errands are put on hold. You don’t feel very brave right now.

Sure, when you go out the door to greet the day with a smile plastered across your face, people see you as strong and resilient, but that’s a mask you wear out in public to cover the pain. They don’t realize the weight you carry.

In the quiet when you are able to get away from the crowds and business of life, that’s when the mask comes off. That’s when your thoughts run wild and the tears begin to fall. That’s when you find yourself wondering where your brave is…when you feel numb to the core and every emotion imaginable comes crashing in?

You find yourself asking where’s your brave when all you see is clouds around you? Where’s your brave when you tear up because you can’t find the strength to hold onto a pencil to write your name? Where’s your brave when you try to walk across the room but can’t seem to get your feet to cooperate and end up having to sit down? Where’s your brave when your words get all jumbled up trying to have a normal conversation? Where’s your brave then?

I want you to know that you are brave even when you don’t feel like it. There truly is strength in you. A strength so amazing that even you can’t see it…but others can. You’ve held on this long, you’ve made it this far, you’ve kept going when others would have long ago crumbled…that’s brave, that’s strong. You don’t see it, but I sure do. You are a brave warrior in this fight.

Rise up and be confident in who you are. Don’t give up just because the road is hard. It takes a strong person to wake up in the morning and face a new day surrounded by challenges, and you are doing it.

Discouragement will happen, exhaustion and stress will find you, but don’t allow your heart to grow weary too. It’s okay to let the tears flow. Sometimes that’s what you need to do to lighten the load. Let the tears flow then let it go and find your brave today, because you are brave!

Signed,
A friend standing with you in the fight

 

I don’t remember

This week, Monday came and went without incident. The only problem is that I don’t remember Saturday or Sunday having been lived through. I have tried hard thinking about the weekend but the only thing I can remember is that I can’t remember.

I think I went to the grocery store, but then again I might have done that on Friday. It rained much of the time and the temperature outside was much cooler…I think. I dozed off a few times in the living room while watching something on TV…I think.

There are so many possibilities that could have filled my time. It’s possible I might have buried a dead body in the back yard, I could have won a years supply of chocolate, or I just might have robbed a bank and am now a multi-millionaire. Who knows? I sure don’t.

The one thing I do know is that I’m still here breathing in and breathing out, alive, and ready for a new day, It’s weird how the brain works. You know how some people have selective hearing and can tune out things that annoy them? Yeah, well I think I have selective thinking.

It amazes me that I have no problem remembering the words to the Animaniacs theme song but easily forget that Tuesday is trash day unless I am reminded by an alert on my phone. If I didn’t have reminders to keep me on track I’d probably not get anything done.

I forget to call people back, answer text messages and respond to emails. It’s not intentional. It just is what it is. If I haven’t responded to you…sorry about that. If I forgot your birthday…again, sorry. If I can’t remember your favorite color, miss an appointment because I didn’t have it written down or forgot your name, trust me, it’s not on purpose.

Multiple sclerosis just has this way of scrambling my thoughts and at times turning them into mush. Sometimes I wonder how I get anything done at all.

Well, it’s time to restart a load of laundry that I left in the washing machine for a few days. Let’s see if I can get them re-washed, dried and put away without incident today. That is my goal. I’ll let you know how it goes.

What was I trying to say?

Words. We all use them. When we aren’t speaking them out loud, we are thinking them in our heads or writing them down on scraps of paper. Not one day goes by without the use of words. My words, though, seem to come out all mixed up. It’s as if someone took my vocabulary, put it into a blender and then dumped all the chopped up words on a table. Only somehow, some of the words got lost. Maybe the dog ate them. I think I’ve seen him talking when he thought no one was watching.

While writing, somehow I seem to put words into sentences that don’t actually belong and leave others out. It’s just as bad when I talk. I will say something and then pause for a moment wondering “What did I just say?” I know I have left people scratching their heads in bewilderment as I matter-of-factly explain something I need done, then wonder why they aren’t doing what I asked.

Somehow I hear everything correctly inside my head but the words that exit my mouth…well, they aren’t the ones I was thinking. It’s the old “bait and switch” routine that my brain plays with me. He’s a sneaky bugger.

It’s crazy how the filter between my brain and fingers, or my brain and mouth, seems to get things all mixed up. I wonder if there’s a replacement filter I can install? They make oil filters for my car that have to be replaced after so many miles of use. Can I get a word filter replacement for my brain, please?

And don’t even suggest turning on auto correct. Auto correct messes me up even more. I am convinced it’s trying to take over the world. It will rewrite my words into different words and insert random words into sentences that have nothing to do with what I’m trying to say. That’s when I get really confused. Many times as I look at something I’ve written, I’m left wondering what I was even trying to say in the first place.

According to auto correct, not only do I “create new words” but I’m “cursing bee wigs” too. I didn’t even know bees had wigs. I’ve heard something mentioned once about bees knees, but never about wigs. Do they even have hair?

Oh, the joys of Multiple Sclerosis. If you can’t laugh, you will have a miserable time in the days and years ahead. Laugh and keep on laughing. Or as auto correct just corrected me, “lift and keep on lifting.”

potatoes eggs and coffee

Potatoes, eggs and coffee

The past few weeks for me have been hard. Sometimes life just keeps happening and no amount of searching uncovers the STOP button. This short inspiring story has been running through my mind lately. It was something I read a few years ago and I find myself thinking of it from time to time, especially when I’m having a really bad day. Every day we are faced with choices. We may not be able to choose the struggle, but we do get to choose how we will respond to it…

Once upon a time a daughter complained to her father that her life was miserable and that she didn’t know how she was going to make it. She was tired of fighting and struggling all the time. It seemed just as one problem was solved, another one soon followed.

Her father, a chef, took her to the kitchen. He filled three pots with water and placed each on a high fire. Once the three pots began to boil, he placed potatoes in one pot, eggs in the second pot and ground coffee beans in the third pot. He then let them sit and boil, without saying a word to his daughter. The daughter, moaned and impatiently waited, wondering what he was doing. After twenty minutes he turned off the burners. He took the potatoes out of the pot and placed them in a bowl. He pulled the eggs out and placed them in a bowl. He then ladled the coffee out and placed it in a cup.

Turning to her, he asked. “Daughter, what do you see?” “Potatoes, eggs and coffee,” she hastily replied.

“Look closer”, he said, “and touch the potatoes.” She did and noted that they were soft.

He then asked her to take an egg and break it. After pulling off the shell, she observed the hard-boiled egg.

Finally, he asked her to sip the coffee. Its rich aroma brought a smile to her face.

“Father, what does this mean?” she asked.

He then explained that the potatoes, the eggs and coffee beans had each faced the same adversity-the boiling water. However, each one reacted differently. The potato went in strong, hard and unrelenting, but in boiling water, it became soft and weak. The egg was fragile, with the thin outer shell protecting its liquid interior until it was put in the boiling water. Then the inside of the egg became hard. However, the ground coffee beans were unique. After they were exposed to the boiling water, they changed the water and created something new.

“Which one are you?” he asked his daughter. “When adversity knocks on your door, how do you respond? Are you a potato, an egg, or a coffee bean?”

In life, things happen around us and things happen to us, but the only thing that truly matters is how you choose to react to it and what you make out of it. Life is all about leaning, adopting and converting all the struggles that we experience into something positive.

There’s a nap for that

I think I slept a total of 3 hours last night if I were to add up all the time I wasn’t actually watching the minutes tick by. Boy, can I feel it already today too. Nights like that make for some really interesting days. You will find me yawning in the shower, as I work, and even as I eat. It’s funny how that happens.

My days seem to always be filled with the longing to go to bed and my nights are filled with my brain refusing to sleep no matter how exhausted I am. It just won’t stop talking, and the random things it chooses to talk about are crazy. “Why can’t you buy a bag of Oreo middles? Why don’t penguins fly? Where is that middle of the universe, really!?”

I guess you could say I don’t sleep even at night, I just nap. I nap at 2 o’clock in the morning and at 3 o’clock in the afternoon…and other times in between. Multiple sclerosis can truly be exhausting, more for some people than for others. I can tell it definitely is for me.

When my body is screaming at me to slow down and take a break, I listen now more than I did in times past. Those pauses in my day aren’t me being lazy or a sign of weakness, they are simply a necessary part of me taking care of myself.

I can’t stop the impact of MS on my day, but I can do better at handling the exhaustion that comes with it. If that means taking a nap, sitting alone in my car to get away from the hustle and bustle happening around me, or taking a trip to the park for a little R&R, then I do it. No guilt. No shame.

Know that you are important enough to take that time too. Life is moving at such lightning speeds and it seems to demand so much out of us that rest just doesn’t fit into our plans. Don’t buy into that lie. Rest is needed and more valuable than you may realize.

Press the pause button today, hang out the do not disturb sign, and make the choice to be still in the middle of the day…just try not to snore too loudly, or drool.

thread

Hanging by a thread

I have come through many days feeling emotionally as if I were hanging by a thread. That kind of feeling can be scary and so very real. It’s hard to talk about things like that with someone who isn’t where you are in the middle of MS and life.

Those worn out, overwhelming emotions can cause a person to grow weary and makes it incredibly difficult to see tomorrow because all possibilities of happiness today seem impossible.

Sometimes you have to get back to the basics in order to make it through the pain you are facing today. Think of your day like this…

Every cell in your body is fighting to survive right now. Your strength may be waining, but your heart is beating and you have breath in your body. Can you feel it? Breathe in. Breathe out. It’s a new day and a new chance for something good to happen. Sure, life is hard, but no matter what you are going through today, believe that things are going to be okay.

MS is not the end of your life. I know how alone you can feel surrounded by the chaos. I know how much life sucks when you are faced with this monster called multiple sclerosis. You probably feel like an iceberg drifting along in a vast open ocean. It’s freezing cold and you are the only one hearing the cracking of the ice beneath you. But look there, below the surface. There are layers and layers of strength holding you up. You are not going to sink in the waters. You are a survivor!

I want you to know that not only are you going to get through this, but you are going to live again. You will feel more joy than you thought ever possible. You will. You really will.

You may walk with a limp, talk with a slur and hang onto walls for support, but you are going to be okay. You may cry more than you thought possible and the load may be hard to carry, but you’re strong. So very strong!

When you feel like the world is crashing in around you, know that I’ve been there too along with thousands of others. You’re going to get through this. You can do it. You ARE doing it…one breath at a time!

alone

You did not cause Multiple Sclerosis

I want to talk about a topic that many people either avoid or choose to ignore. It’s something I see very little support for yet affects over half the population of people living with Multiple Sclerosis as well as those living with other chronic illnesses like Parkinson’s, ALS, Lupus, EDS, Asthma…too many illnesses to even list.

If this doesn’t affect you, you can simply pass up today’s post as something to be thankful for since you are among the few who have been kept from the judgements of others. For the rest, I hope you leave encouraged in knowing that you aren’t alone and that you are an amazing person even while living with a disability.

I want to talk about faith and the disabled. Regardless of your background or beliefs, it seems there is always someone who has an answer as to why you got sick and how to be healed…and if you aren’t healed then there is something wrong with you. I have been approached with that very thing more times than I can count.

I have been told everything from I didn’t have enough faith, to I must have some unconfessed sin in my life, to I must really not want to be healed…all of which are untrue. If you are anything like me, once diagnosed you spent hours searching your heart for answers of where you went wrong in life only to come away exhausted and feeling defeated.

Something else that gets piled on top of all the guilt that is already weighing you down is when someone shares a story with you of how a person was healed of cancer or a heart condition…and you can be too if you just believe. I don’t think people realize how much it hurts to have a comparison made like that. It comes across, yet again, as saying you must be doing something wrong or that you don’t have enough faith. I’m sure that’s not the intent of the comparison (at least I hope it’s not), but that’s how it comes across.

If you have had something like that happen to you and are carrying around a boatload of guilt because of it, I want you to know that there is nothing wrong with you. You didn’t cause MS due to past mistakes or terrible wrongs committed. It’s not because you lived a bad life, said the wrong prayers or don’t have enough faith. Multiple Sclerosis just is. It’s a reality that can’t be explained away. It isn’t caused by a lack of faith either. It affects the best of the best, the worst of the worst and everyone in between.

Don’t hold onto the guilt others have tried to place on you or that you have put on yourself. Let it go and shake it off. I know that’s easier said than done, but I also know you can do it. Don’t believe the lies that take off running through your head. You are a beautiful person with an amazing amount of strength…more than you realize. You are not the cause of MS in your life, never have been and never will be.

We live in a world that worships physical perfection. The helpless, vulnerable, chronically ill and impaired don’t fit that picture perfect image. People are so good at pointing fingers and trying to place blame where it shouldn’t be, but in the process they are actually causing us harm, not help. And just so you know, they are wrong.

Maybe, just maybe, those of us with a disability are here to show the world that the “perfect” people are the flawed ones. Maybe, just maybe, we are here to teach others how to love and truly be compassionate without judgement. Maybe, just maybe, we are changing the world through our suffering…one tear at a time. Maybe, just maybe, the strength we carry today is helping to build a bridge for those who will follow tomorrow. Maybe, just maybe.

Disabilities are a part of life. They have nothing to do with how much faith someone does or doesn’t have. They have nothing to do with how much someone prays, reads their Bible or takes part in worship. They do, however, have everything to do with being human.

“Part of the problem with the word ‘disabilities’ is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.” – Fred Rogers

I have an MS (Multiple Sclerosis) degree and didn’t even know I was studying for it

I have an MS (Multiple Sclerosis) Degree and didn’t even know I was studying for it. It’s not an honorary degree either. It’s a real life, up close and personal, in your face degree. One of those “I studied my butt off” degrees. My next step is to get my Doctorate…and that’s not too far off. With the amount of time I spend at hospitals, doctor appointments, therapy and the pharmacy, I should have my doctorate in no time flat.

I have had people ask me, “What is MS?” If I say it stands for Multiple Sclerosis. It’s a chronic progressive disease where the nerves in the brain and spinal cord become damaged and eaten away by the immune system causing numbness, speech impairment, muscle coordination difficulties, blurred vision and severe fatigue (and that’s just the tip of the iceberg of what we go through)…I tend to get a blank stare and “huh” comes tumbling out of their mouth. Either that or they proceed to give me their cure for this incurable disease or tell me about a relative of theirs with MS that died.

It’s interesting to me that we live in a time where knowledge is powerful and easily accessible (more accessible that any modern day business with wheelchair ramps and elevators) yet so few people actually use the knowledge available to them to truly KNOW anything. We are pros at the latest gossip and celebrity news; we know all the cheat codes and hidden passageways in the newest released game; we even know the difference between tap water, distilled water, spring water and mineral water; but when it comes down to things that actually matter, we are fairly ignorant.

If I were to write an entry in an acronym dictionary on what MS stands for, it would look something like this…

MS – an acronym for:

Multiple Sclerosis
Messaging Short
Many Sores
Majorly Sexy
My Strength
Mighty Strong
Many Smiles
Making Strides
Moving Still
Monster $(^&
Mystery Solved (coming soon to a theater near you)

The next time someone asks me, “What is MS?”, I’m going to whip out one of my acronyms because even in our highly intelligent and knowledge driven society, people can’t seem to grasp an understanding of Multiple Sclerosis. But I don’t blame them too much, I still have trouble with MS and I’m the one actually living with it every day.

Don’t get too discouraged when you find people are clueless about MS. I didn’t know anything about it until I was diagnosed. But now…now I’m more knowledgable than even some of the finest Neurologists out there. Maybe that means I’ve actually earned that PhD after all. So call me Dr…Dr. Penelope! I like the sound of that. Are you a Dr. too?