Friends

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… and living with MS is definitely a journey. When life is going good, it’s easy to find people to hang out with. Add a challenge or need peoples help on a regular basis and most of those so called friends disappear.

So many times people proudly boast about the great numbers of people they know, but are those people really friends? I can almost guarantee that a majority of them are what I would consider fair-weather friends. They will pretend that they like you when things are going well for you, but the moment things begin to turn bad they gradually begin to distance themselves from you.

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 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 what 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 actually 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

MS Gets on My NervesMS WarriorMS Superhero

 

I create new words and sentences that actually mean nothing

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 in the mix. 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 together into sentences that don’t actually belong together and leave me scratching my head wondering “What was I trying to say.” Proofing my writing takes a lot of patience. 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 or get put down on paper…well, they aren’t the ones I was actually thinking of. 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 sentences into different words and insert random words 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.”

MS Gets on My NervesMS WarriorMS Superhero

 

Beautifully broken

Some say that I’m broken. They look at my past mistakes in life and even at the fact that I’m living with multiple sclerosis, and all they seem to see is cracks and imperfections. But the most amazing thing happens when you hold me up to the light. You may see my broken places…but, you will also see what makes me beautiful, because in those cracks are the stories of overcoming and standing strong.

Because of those imperfections, I am who I am today…broken bits and all. My scars tell my story. My MS scars may be invisible to the world, but their effects are made real as I struggle to get through the day. I may not be able to walk more than a few steps on my own, I may not be able to change the sheets on my bed without a fight, I may not be able to hold onto my coffee cup without using two hands…but I keep fighting anyway. I push on. I keep going. Sometimes through a sea of tears, but I keep going.

This past week was a tremendous challenge for me that tried its best to sink me. My accounts were hacked with an attempt to bring about destruction…like I really needed something more than MS to try and destroy me. Trust me, MS does a pretty good job of that without any help from anyone else. Good thing is that even with the pile of crap coming at me, I didn’t give up and never will. I’m a fighter that way.

You have broken places and cracks too. Your mistakes and hurts are real, as well as your disability, but so is your beauty. Let your beauty shine through you and let your story inspire others. Just because you have cracks doesn’t mean you are worthless. Even if you are broken, you are a container of life, love, brilliance and beauty. Let those things spill out today.

The story is in your scars and may be just what someone needs to hear in order to keep going.

MS Gets on My NervesMS WarriorMS Superhero

 

Living with multiple sclerosis is exhausting

I think I slept a total of 3 hours last night if I were to add up all the time I wasn’t lying in bed just watching the minutes tick by. Nights like last night make for some really interesting days. You will find me yawning in the shower, as I work, and even as I eat and I still won’t be able to sleep for a short afternoon nap. It’s crazy how that happens.

Multiple sclerosis can truly be exhausting, more for some people than for others. I know it definitely is for me.

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 the little sleep I do get at night are really just a few naps added together. I know I nap at 2 o’clock in the early morning hours while I’m longing to actually sleep. There’s something special about the 2 o’clock in the morning time. 

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 falling asleep at random times in the day then I do it. No guilt. No shame.

Know that you are important enough to pause your day 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.

Oops, sorry, I forgot

My ability to forget things is a skill. It takes great talent to forget birthday’s, lunch plans, appointments, shopping lists, things people said only a few minutes earlier, and words that I know I know but can’t seem to find even on the tip of my tongue. And that all happens in one day. Each day is different, yet the same. I’ve become a pro at forgetfulness.

And just so you know, it’s different than old age forgetfulness or the casual “sorry, I forgot” kind of thing. My memory issues live in a universe and dimension all their own. A place where my thoughts and words float about just out of reach. I try to reach for them, but those darn letters move about too much. Sometimes they hide from me and other times they simply slip through my fingers.

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 won a years supply of chocolate or I might have robbed a bank and am now a multi-millionaire. I might have even buried a dead body in the back yard. Who knows? I know I sure don’t.

So what causes my MS forgetfulness? Take a look at my brain and it would be obvious. The damage in there looks a bit like swiss cheese. Those holes and lesions in my brain are the reason for my forgetfulness. Black holes don’t just exist in outer space you know. Some live right here…inside my brain. Talk about things getting lost in the dark. I live there.

My brain may not be able to function properly every minute of the day, but at least I know I have one. I even have documented proof. Just check out my MRI’s if there’s ever any doubts. As for some people, I think they lost their’s entirely a long time ago.

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 Mahna Mahna song from the Muppets but can easily forget that Thursday 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 probably wouldn’t 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 don’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.

Here’s the Mahna Mahna song. Something that can get stuck in your thoughts without even trying…

Living with multiple sclerosis is not your fault

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 spared 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. I talk about it from time to time, but I think it’s needed again just watching the chatter online. Regardless of your background or beliefs, it seems there is always someone with 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 don’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 have the same experience if you just live as they say. 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 even 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 just 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 others 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. Shake off those defeatist thoughts, take a deep breath, and hold your head high today. You are an MS Warrior.

“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

MS Gets on My NervesMS WarriorMS Superhero

 

When it feels like the world is crashing in around you

I have come through many days feeling emotionally drained and dead. 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, overwhelmed emotions can cause a person to grow weary and makes it incredibly difficult to see any good happening in life because happiness today seem impossible. Sometimes you have to get back to the basics in order to make it through the pain you are facing. 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 it feels 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!

MS Gets on My NervesMS WarriorMS Superhero

 

I dare you to live

I love days when I am able to get out of the house even if it’s only for a wheelchair ride down the street or just through the front yard. The weather in Alabama is starting to cool off a bit so my outside adventures can happen more often now. On cooler days I love it when the sun is out, the breeze is blowing, the birds are singing, and everything in the universe seems alive.

Even though I have my moments of weakness and difficulties, I never want to throw the towel in and give up because of my limitations. I want to keep going until I no long can. Yes, I’m that stubborn. But to me that kind of stubborn can be a good thing. As long as I’m not harming myself or others, my stubbornness is the push I need to keep going. Believe me, if I wanted I would have given up months ago…years ago…but that’s just not in me to do.

When I was out in the yard yesterday I was thinking about my many trips years ago I made to the amusement park for fun. I don’t live too far from one and I remember riding the scariest of the scary rides. I had no fear. Now, Just thinking about some of those rides makes my head spin and puts my body on tilt. Thankfully I’m sitting down.

It’s kind of ironic that I can lose my balance so easily now. I wish I could exchange this roller coaster ride multiple sclerosis has given me in my head with a trolley ride instead. I have an endless roller coaster ride that I would gladly exchange for one that had stops, pauses and moments of stillness. Gone are the days of me riding daring rides. Now, because of MS, I carry one around with me everywhere I go that dares me to live.

Life is short and moments will come along that you can never get back. Don’t become so busy with things that have little to no importance in life that you later regret missing out on something that you could have done instead. You have to take each day as it comes. When you find yourself able to do something…do it. You never know if you will have that opportunity again.

If you can walk, get out and walk. If you can run…run. If you can dance…dance. If you can ride in a wheelchair…ride. Soak in every moment you can. You never know what tomorrow may bring. It may be sunshine, it may be torrential rains, but if you’re anything like me just pull out an umbrella and keep on going without any regrets.

While there’s life, there’s hope. Don’t let MS stop you from living. Let it stir you up to live life to the fullest. I dare you to live. Actually I double dog dare you!

MS Gets on My NervesMS WarriorMS Superhero

 

What is MS?

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, and the optic nerves in the eyes become damaged as the outer coating on the nerves called myelin gets 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 readily available and easily accessible (more accessible that any modern day business with wheelchair ramps and elevators) yet so few actually use the knowledge available to them to actually 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 video games; 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 with it. But now…now I’m more knowledgable than even some of the finest Neurologists out there. Maybe that means I’ve actually earned a doctorate degree. So call me Dr…Dr. Penelope! I like the sound of that.

I have an MS 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 degrees. One of those “I studied my butt off” degrees. Do you have an MS degree too?

Choose your own adventure…

I try so hard to get through my days with a bit of dignity and grace, yet somehow multiple sclerosis voids those plans as soon as I wake up. Sometimes I don’t even make it out of bed before my body decides to take off on a different road into the unknown. You would think I would have the unknown fully charted by now.

Do you remember those books where you could pick your own adventure to end the story with? You could navigate through the story and have things end with happy moments, disasters or surprises. The problem with my story is that there is never a suitable outcome to pick from.

Yesterday I had a choice of kitchen disasters, bathroom mishaps, vehicle troubles, and brain fog mistakes. But just when it came time to choose my adventure things shifted and I ended up with overdue bills needing to be paid, a lack of energy, muscle spasms and pain through the roof… more like a gazillion on the pain scale. I didn’t actually get to choose any of the chapters and found myself stuck in a perpetual cycle of ups and downs, blurred vision and ringing in my ears.

It’s a new day today so I’m believing for a better day, but so far I don’t see things shifting in my favor. I have already had to restart a load of laundry that soured in the washing machine because I let them sit wet for too long. I need to patch a hole in the wall in my hallway because I didn’t turn properly in my power chair. I also need to clean up a coffee disaster I created when I spilled the coffee grounds all over myself and the floor.

Maybe I just need to go back to bed and try again tomorrow. At least I woke up today with a smile and even though my MS life is challenging, it doesn’t win. I may not be able to choose my own adventure, but I do get to choose my own responses to everything that happens. My response will always be one of gratitude and thankfulness. Yes, oddly enough I smile my way through the pain. Not a fake smile either. It’s more a smile of determination and gutsy grace. We all have to push through the obstacles that pile up in our path. Even when we end up with a lot of difficulties and pain. We are warriors that way.

MS Gets on My NervesMS WarriorMS Superhero