I’m fighting a monster called multiple sclerosis

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I have learned more about myself than I ever thought possible because of a monster called multiple sclerosis.

I’m braver now even though I didn’t know MS existed in my life until I was in my 40’s. I fought through mind numbing pain, muscle weakness and tears. I fought it daily with a sword in my hand while yelling, “Hiyah!”.

I’m stronger now because I had to be. My choice was fight or give up, but I’m not a quitter. That’s just not a part of my DNA. So fight, I did. I learned how to use a cane, then a walker and now a wheelchair. I learned what foods benefit my body the most and what supplements help me to cope.

I’m happier now because I’ve discovered what really matters most in life. It’s crazy how that happens. You face down a beast like MS and discover a strength that you didn’t even know you had and that many things in life aren’t really that important anymore. Hold onto true friends and family, and let the other things go. You don’t need the extra baggage. It will only weigh you down and hold you back.

I stand taller, figuratively, because I am a survivor. Yes, there will be struggles and pain. There will be times I may be fearful of tomorrow or even of the next step I need to take, but I will push to the end and give it I’ve got.

Remember, you are not alone in this fight. The great Rocky Balboa said, “The world ain’t all sunshine and rainbows. It’s a very mean and nasty place and I don’t care how tough you are, it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain’t about how hard ya hit. It’s about how hard you can get hit and keep moving forward.”

Come fight with me.

There’s an earthquake happening inside my body

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I woke up this morning to an earthquake.  The entire room was shaking. No wait, it wasn’t the room. It was just ME. My normal hand tremors were happening in other parts of my body as well. My legs, my arms, my head…everything was shaking. It seemed like all of my nerves were on a quadrillion-trillion dose of Red Bull or had way too much caffeine.

Much of it has calmed down now after taking a few muscle relaxers and some pain meds, but I still have the feeling of tremors even though I can’t see them. I have a weighted bracelet that helps to calm things down in my hands but not much is helpful to control the other parts of my body. It’s such a weird feeling too. It’s almost as if my body is trying to jump out of my skin. Now, the only problem is, the muscle relaxers and pain meds make me sleepy. We’ll see how well that goes today. Sleep or tremors. Not sure who is going to win this battle.

It’s so hard to get through a day when you spend a majority of it fighting your own body. When you have to think just to take a step or concentrate in order to move your body in the direction you want it to go. Most people just don’t get it when you try to explain what’s happening. It almost makes you feel as if you’re going crazy.

Nobody should have to think this hard to do the things that everyone else can do without even thinking. I’ve already spilled my coffee trying to drink from a no spill cup, tossed my grape jelly toast on the floor trying to take a bite, and kicked the coffee table for no reason at all.

Our bodies have been trained since we were toddlers to move and function: to walk, pick things up, sit down, stand up, reach, and even do the happy dance. But when those wires get crossed or damaged, and the message transmitted from the brain to the rest of the body becomes disrupted, there’s no telling what might happen. We may want a certain leg to move and it won’t, or need a hand to function properly and it refuses to obey, or need a tremor to stop shaking everything in sight without success. But when sensation is crazy too…that’s an entirely different level of weird.

When it feels like water is dripping down your cheek and you find yourself constantly checking just in case it’s real, or when it fees like bugs are crawling across your skin and yet there’s not an ant to be found, or when you feel millions of needles stabbing into your hands and feet, or when it seems like every muscle in your body is twitching and on edge…all happening inside your body where no one else can see. You begin to feel like you are losing it.

I have been known to kick the coffee table, throw things across the room, drop my drink and even hit people…all due to multiple sclerosis. At least now, if someone says something stupid and I smack them upside the head, I have a valid reason for my actions. “Oops, sorry…that was MS, not me!”

It’s hard dealing with an out of control body,  but life goes on and nothing ever seems to make sense anymore. This unseen monster is too weird and unexplainable. Life changed without warning and I can’t send it back.

 

I’m Raising $500 for the annual website costs of Positive Living With MS. Any amount would be a tremendous blessing and give this blog further reach to people living with multiple sclerosis. Caregivers, family members and fellow MSers have always enjoyed reading my blog. Many say that they would miss me terribly if I would ever go away. That I am a light of hope and encouragement that helps get them through their day. I was diagnosed with PPMS myself in 2013. Most of my writing is about my own experiences. I try to mix in humor as well as the reality of what life is like living with MS.

Show your support by going to this link

 

Shake it off and keep going

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I’m back after the holidays. Am I supposed to feel rested? It didn’t work out that way for me. I have no idea what rested actually feels like, but I’m glad I’m back. Hope you didn’t miss me too much. (grin)

I heard a story about a farmer named John that was out feeding his animals on the farm when he noticed that his beloved donkey, Freddy, was missing. He walked all over the fields but couldn’t find him anywhere. Eventually he stood still for a moment, and he could hear the donkey wailing in the distance. He followed the sound until he came to the well. He leaned over and saw Freddy at the bottom.

Farmer John could see the distress on the donkey’s face and tried his best to get him out of the deep hole. He tried ropes, ladders, and planks, but nothing worked. The farmer sent down water and food to keep Freddy hydrated and fed while he could to make a plan to get him out of the well.

After three days, John gave up because he realized that there was no way for him to get Freddy out of the well. He spent one more day trying to save him but after the fourth day of trying unsuccessfully to retrieve Freddy from the well, he gave up. He called his neighbors who were also unsuccessful.

The farmer decided that the donkey was old and the well was already dry and needed to be covered anyway; that it really wasn’t worth pulling the donkey out of the well. The neighbors joined John in using shovels to throw dirt down with shovels. They were going to fill the well up and bury Freddy in it.

At first, the donkey cried horribly as he realized that the farmer had given up and was going to bury him while he was still in the well. Then, all those shoveling dirt closed their ears not to hear the sad wails of Freddy.

But then Freddy stopped crying, and everyone peered over the edge to see why he became silent. But, instead, they saw the donkey standing still, and as they shoveled, he shook the ground off his back and stepped on it.

Freddy continued to do this, as they shoveled he took a step up until he was level with the ground. Then, he looked at them, gave a neigh, and ran off to the pasture.

Like Freddy, sometimes we are given a hard knock in life, and people try to help but they eventually give up on us. But it is important to keep going, shake it off and take a step up until you are out of the deepest of wells.

Life is going to throw dirt on you, all kinds of dirt… the trick to getting out of the hole is to shake it off and use it to step up. Each of our problems are steppingstone.

Even the most impossible of situations are possible. Maybe not in the way we want them to be or how we think we need them to be, but somehow they work out. You have already faced some nearly impossible times and come through them maybe a little bruised and broken, but you made it. When you see them show up in the future, don’t panic. Take a deep breath, and hold on.

For me, my faith in God gives me the strength to keep going. At the end of the day, most of our regrets will lie in the things that we were too afraid to try. Fear is one of the biggest deterrents of success. If you never get the courage to try, you will always fail. Will you give up after a few setbacks or will you shake it off and keep going?

Each person is different in how they deal with the impossible, just know that you have within you the strength to go on. Shake it off, step up, and keep going.

I want to see you be brave

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I think one of the hardest things about living with multiple sclerosis is the pressure from certain people to just get better. It’s almost as if they think I have this secret power tucked away in my sock drawer that will rid my body of all the symptoms, difficulties and struggles MS is causing in life, but for some unknown reason I choose not to use it.

When I am unable to join in on the outings, parties, dinners and shopping trips people are taking part in, the vibe I get at times from them is one of doubt that things could actually be “that bad.” I can almost see the thought bubble above their heads as they wonder how it is I can go from feeling okay one minute to feeling like crap the next.

The best thing anyone could ever do for someone living with MS is to allow them to decide how they’re actually feeling and what they are capable of doing. I like it when people leave it up to me to decide what I can and can’t do, and are okay with my decision. After all, it’s my body…it’s my life. I should know how I’m feeling.

I don’t know what the next moment in my life or tomorrow will bring. I don’t know if today will end in tears or laughter. I don’t know if MS will get the best of me or if I will be able to muster up enough strength to fight one more day. I don’t know if my hands or legs will fail me when I need them the most. I don’t know if there’s really a light at the end of the tunnel or if I’m headed towards a tragic collision with the 6 o’clock train. There are a lot of things I simply don’t know.

Those that love me enough to give me the option to choose and are okay if my decision is different than what they want or planned for…those are some of the most amazing people on the planet. No one should ever have to spend time defending how they feel.

When you find yourself sitting in a puddle of your thoughts wondering where everyone has gone, know that there are others with MS who understand. We may be separated by miles and miles of distance and separated by oceans and seas, but we are connected through wires and keystrokes. We are in this together. I want to see you be brave with everything you go through. You can do this.

Multiple Sclerosis has taught me the value of living

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Multiple Sclerosis has taught me the value and importance of living…really living. In looking back on my own journey, I have noticed the shift I made from being overly focused on achievements and promotions to building lasting friendships and choosing to enjoy the little things in life. Things like rainy days, moments of quiet, giggles and laughter, sunsets, butterfly kisses, “thinking of you” texts, and of course the much appreciated cup of coffee.

For me, spending time with the people I love, giving of myself to help the less fortunate, and spending some much needed time taking care of myself…those are the things that are important. If anything, MS has given my life a greater purpose because it has opened my eyes to seeing the value of life itself.

The following is the philosophy of Charles Schultz, the creator of the ‘Peanuts’ comic strip. You don’t have to actually answer the questions. Just read them through and you’ll get the point.

1. Name the five wealthiest people in the world.
2. Name the last five Heisman Trophy winners.
3. Name the last five winners of the Miss America.
4. Name ten people who have won the Nobel or Pulitzer Prize.
5. Name the last half dozen Academy Award winners for best actor and actress.
6. Name the last decade’s worth of World Series winners.

How did you do?

The point is that none of us remember the headliners of yesterday. These are no second-rate achievers. They are the best in their fields. But the applause dies. Awards tarnish. Achievements are forgotten. Accolades and certificates are buried with their owners.

Here’s another quiz. See how you do on this one:

1. List a few teachers who aided your journey through school.
2. Name three friends who have helped you through a difficult time.
3. Name five people who have taught you something worthwhile.
4. Think of a few people who have made you feel appreciated and special.
5. Think of five people you enjoy spending time with.

Easier?

The lesson: The people who make a difference in your life are not the ones with the most credentials, the most money, or the most awards. They are the ones that care.

What do you spend your time on? The key thing is to always remember that no matter what happens in life or how bad things may get, surrounding yourself with people who care and love you is what’s important. That’s what gets you through your day.

The people you remember are the ones that made a personal difference in your life. Strive to be that kind of person for others. You won’t be able to change the world, but if you make a difference in just one person’s life…that’s the world to them.

Multiple sclerosis explained by someone living with it

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Those long lists on medical sites that describe multiple sclerosis really don’t tell the full story. They list out symptoms that make MS sound no different than a vacation to the hospital for a broken toe. So here is MS according to someone who actually lives with it. Yes, there is humor in there somewhere. You just gotta laugh at MS or you will go crazy.

  1. FATIGUE

    Much like someone who has just hiked 20 miles up a steep hill after two days of no sleep while carrying a backpack loaded with rocks on the hottest day of the year… that is fatigue. It’s that moment when your legs can no longer hold you up and every muscle, bone, and even eyelid hurts. Then as soon as you sit down (or more like fall down) you are asleep. A tornado could blow by and you would sleep right through it.

  2. WALKING DIFFICULTIES

    No we aren’t drunk, but imagine those times when you have experienced being drunk yourself. You attempt to walk across the floor with full intentions of simply going from your chair to the door but end up walking into walls and tables instead.

  3. SPASTICITY

    A constant charlie horse in the legs is more like it, but sadly it’s not just in the legs. Any muscle can be affected. We also have a tendency to involuntarily twitch and kick without warning. So if you say something stupid and we hit you in the head…oops, we’re sorry. That was an involuntary spastic moment.

  4. NUMBNESS

    Do you remember a time when you were sitting on the floor with your legs crossed and your foot fell asleep? Now imagine living with that feeling every minute of the day, only it’s not just in your legs. Many of us have that very feeling in our arms, legs, face and body.

  5. VISION PROBLEMS

    We don’t enjoy seeing two of everything unless it’s chocolate, or not being able to read an email on the computer because the words are blurry. Many of us will lose color clarity as well. So, if we are wearing uncoordinated clothes, don’t laugh. We didn’t know we were wearing bright neon green.

  6. DIZZINESS & VERTIGO

    You know that feeling you get when you are sure you’ve entered an unknown universe for a split second because you stood up too fast? Everything goes blank and things in the room begin to move around? Yeah, we live there. Who needs an amusement park when we have a roller coaster in our heads everywhere we go. We can tilt our head a certain direction and we’re off on the most exhilarating ride of our life.

  7. BLADDER & BOWEL PROBLEMS

    Long bathroom lines are our enemy. We can’t hold it and will give you a reason to mop the floor if you don’t let us cut in line. We can go from the extreme of not being able to go, to “I gotta go NOW!” One positive in it all, if you ever need to know where the nearest bathroom is… just ask. We know the fastest escape route to every bathroom on the planet.

  8. COGNITIVE DIFFICULTIES

    We forget often: scheduled appointments, birthdays, someone’s name, words, phone numbers and even how to do something we’ve done for years. Multitasking is out of the question. And asking us to deal with a difficult situation that requires deep thought may be met with a blank stare because we simply can’t get our brain to work.

  9. PAIN

    Yes, we experience pain. Lots of it, too. It’s not pain like when someone is stepping on your foot either. We are in pain because our nerves are misfiring and sending incorrect signals to our brain. And just in case you were wondering, Tylenol doesn’t help. You have to stop the communication process, not the actual pain. Sadly, MS pain never gives us a day off or allows for a time-out.

  10. SWALLOWING PROBLEMS

    If you invite us over for dinner and offer us a deliciously cooked steak and we decline, choosing to eat a bowl of soup instead, don’t be offended. Sometimes the effort of chewing and then trying to swallow what we just chewed is difficult. It’s MS’s fault, not your cooking… although, if you met my neighbor you would have a different story to tell.

  11. HEAT & COLD INTOLERANCE

    Heat causes chaos to our already damaged nerves making our symptoms a hundred-trillion times worse than normal. Add humidity to the mix and it becomes an unbearable situation. The cold is just as bad for many of us. Someone once said that there’s a place where the temperature is perfect all year long. It’s called “My Imagination.” Have you heard of it?

  12. SPEECH PROBLEMS

    Aside from the long pauses we take as we search to remember words, our voice can sound weak, winded, choppy and soft. Many times people will ask us to speak up, and although we would like to and even try, we can’t seem to get the words out any louder. Drive-thru ordering can be comical…“So, you want lettuce and popcorn on your hamburger? Really?” Regardless, we have a lot of wisdom, so pause and take the time to hear it.

  13. EMOTIONAL CHANGES

    Mood swings are real and we have them more than we like to admit. We have been known to burst out laughing at the most inappropriate times, like when someone is sharing a sad story about how their pet fish died. We also cry for no reason, get angry faster than normal and become extremely frustrated at things that never frustrated us before. After all, our life has flipped upside down and we are living in a world we don’t understand anymore.

  14. ITCHING

    Oh, the terrors. Itch, itch, itch…scratch, scratch, scratch…and not one mosquito in sight. We probably look like a ninja contortionist as we uncontrollably scratch at different parts of our body without any visible reason, but when our skin itches we just want it to stop. We have been known to scratch our skin raw in the process.

  15. TREMORS

    No, we don’t have Parkinson’s Disease… although it does look similar. Our hands, head, and sometimes whole body, can go through bouts of uncontrollable shaking and we can’t make it stop. We would make a good breakfast chef if anyone’s hiring. When it comes to cooking scrambled eggs we could whisk those eggs to pure fluffiness.

  16. BREATHING PROBLEMS

    MS can cause muscle weakness in our respiratory muscles giving us one of the most uncomfortable hugs ever. The MS Hug feels like a boa constrictor has wrapped itself around our torso and refused to let go. Good news: we are still breathing. Bad news: we have yet to discover the secret to breathing fire. I blame my breathing difficulties on the fact that my dad took my nose when I was 3 years old and forgot to give it back.

  17. HEARING LOSS

    Hearing loss, fluttering sounds, and ringing in the ears can be frustrating. For many, it feels like water has been trapped in the ear muffling sounds. Between that and the ringing, we carry around our own heavy metal band in our head. Although, sometimes our lack of hearing can be voluntary due to people being ignorant and saying stupid things that we don’t want to regret responding to later.

  18. SEXUAL PROBLEMS

    Something people don’t like to talk about, but just because sex isn’t talked about doesn’t mean it’s not a problem. Numb body parts, disrupted nerve signals and emotional changes make intimacy 100 times more challenging. Lots of patience, understanding and care is needed. Well, that and maybe some chocolate, or bacon…or chocolate covered bacon.

  19. HEADACHES

    Our headaches can be caused by many things: medications, lack of sleep, damaged nerve receptors, depression, a bladder infection, steroids, stress, and of all things… annoying questions. “Have you taken an aspirin?” is not an appropriate question to ask us about our pain. Neither is a response telling us it’s all just in our head. Really? MS…in our head? Who would have thought?

  20. SEIZURES

    Not all seizures are the same. It’s possible for us to have the typical kind with uncontrollable jerking movements, but we can also experience lapses of consciousness without any movement at all, experience a “drop attack” where our legs turn to jello causing us to drop to the floor, and have moments when we appear to be wide awake but are completely non-responsive. Those are all considered types of seizures, not new dance moves.

Bladder issues with multiple sclerosis

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I have had an SPC (suprapubic catheter) for over 7 years now. It’s a device that is surgically inserted into the bladder to drain urine because I can’t properly urinate on my own. At the beginning of my multiple sclerosis journey I was having problems being able to void my bladder. I lost muscle control which caused me a lot of problems. My MRI showed lesions on my spine where the bladder is controlled. They cut off my ability to use my bladder muscles.

I used to say my bladder was conspiring against me because as soon as I would get home from work and opened the front door, my bladder would let loose and I would have a puddle in my entryway to clean up along with myself. When the urologist suggested an SPC I thought that was the answer to my problems. That is until I discovered some issues with living with an SPC. No one tells you about that.

What I discovered is that sometime the catheter doesn’t drain properly because of bladder stone, increased sediment in the bladder, unwelcome UTI’s and of all things, a faulty catheter. Yesterday I called home health because my catheter was clogged and wouldn’t drain. Every time I drank something, within 15 minutes I was uncontrollably peeing on myself meaning the catheter wasn’t draining as it should. I had a load of laundry after two days of fighting with the clog.

When the nurse came to change my catheter I was so glad because I needed my coffee. It’s crazy how that was my main thought. Not the problem with cleaning things up constantly or running out of clean clothes or even a clogged catheter, but coffee. As I’m writing this I’m enjoying a fresh cup of coffee. Ah, yum! I’m glad a catheter change worked.

If you would have told me MS had this kind of trouble I wouldn’t have believed you. I thought a catheter was a good thing, but I have noticed it can be a blessing and a curse. That’s true for a lot of MS symptoms. I always thought my tremors were a curse but I discovered that when I uncontrollably kick someone or slap someone that says something stupid, I can blame it on MS. Oops… sorry, that was a spastic moment.

Or when I forget an important event that I really wasn’t interested in. Oops… sorry, my brain doesn’t work right and I forgot. (grin)

Or when I can’t remember a show that I previously watched… that’s just my reason to watch it again and be surprised at the outcome.

There’s always a way to look at things differently. Don’t take a life with MS too seriously. Besides smiling is a lot better than a frown. It helps your immune system to function more effectively. It is thought that when you smile, your immune function improves because you are more relaxed. So smile! It does a body good.