The unexpected happens

I had an interesting past 4 days. Four days filled with pain, tears, doctors, meds and friends. Four days that shouldn’t have happened, but did. Four days that I’m thankful are over.

As many of you know, I ended up in the Emergency Room at the hospital because of a problem that occurred with my suprapubic catheter. For those unsure of what that is, it’s a tube that is surgically inserted into the bladder just below the belly button and attaches to a urine bag outside your body. The tube, or catheter as it’s called, has to be replaced once a month. I have it because the muscles that control my bladder no longer work properly. MS decided to paralyze them without getting my approval first and now my brain will no longer communicate with my bladder.

Well, my catheter change was done wrong by a nurse that comes to my house and it left me in extreme pain. And I do mean extreme. The urologists office was closed so the ER was my only option for getting help, but the only help they could offer was pain meds to get me through the weekend until I could see the urologist on Monday. That left me the entire weekend in misery.

Unexpected things like that happen in life. I hate it. We all hate it. But they happen. Each day we wake up to challenges and obstacles, and each day we must find the strength to get through them.

Today you may be faced with pain, weakness, uncoordinated legs, brain fog, dizziness, poor eyesight, numb body parts…so many things MS related. But you could also be facing stress on the job or at home, financial problems, relationship difficulties, sickness of a loved one, troubles with your kids…so many personal things that seem impossible to manage.

In the heat of the moment, it’s hard to see anything worth striving for when all you see is pain. Your thoughts are focused on getting through the next 5 minutes. Forget about tomorrow, you just want to make it through today. Sometimes it’s hard to see through the tears.

But just because the end appears to be far away or even impossible to find doesn’t mean it’s not there. I promise you…everything has a beginning and an end. Sometimes the end doesn’t happen the way we want it to, but it always comes and peace is always found. It’s just in those minutes, hours, days, years of going through the difficulties that we seem to get lost, discouraged, and weary.

I want to encourage you today…to let you know that you can do this. Don’t let the “going through” times weigh you down. Sure, MS may knock you down (sometimes literally) and mess with your plans, life may deal you a crappy hand, but don’t let that stop you from living.

You have to rise up with the kind of determination that never quits fighting. Don’t throw your hands up in surrender just because everything gets too hard. Take on the challenge and prove to the world (and to yourself) that you are not going down without a fight. Don’t stop trying, don’t quit, and don’t let MS get the last say in things.

pie

Take a break and have some pie

I woke up this morning to my teeth chattering. It’s grown cold and I’m not a fan. The cold tends to stiffen my muscles and causes me to have to work extra hard just to move. The heat isn’t my friend either. Oh, to live in a place where the weather is perfect—not too hot and not too cold—would be amazing. I don’t think that place exists, but it’s great to dream anyway.

There’s nothing worse than feeling out of control. The temperature tends to do that to me. It comes along and throws a wrench into my plans and messes things up. Everything I do tends to take more effort and a whole lot more energy. I get exhausted just imagining my day and all the things needing to get done…and I haven’t even gotten out of bed yet.

Many times, if you’re anything like me, you push yourself hard anyway…sometimes too hard. All that energy you use making your muscles function and your body move leaves you worn out. You want desperately to be able to do the things needed for the day, but your body just won’t let you. You find yourself weaker in your efforts to make yourself strong. Then discouragement comes knocking at your door along with some of its friends…weariness, frustration, defeat and disappointment.

At those times, it’s important to take a break. My kind of break may be different from yours, but anything that puts life back into perspective helps. It may be taking time to pamper yourself by getting your nails done or going to a local miniature golfing spot to ride the bumper cars. It could be finding a secluded spot away from the world to shed a few tears and pray in private or even something as simple as having a slice of chocolate pie…anything that helps to calm your heart and put peace back into your day.

Taking a break doesn’t mean you quit on life or on your plans, it doesn’t mean life will change and all of a sudden you will have this amazing boost of energy and your nerves will work properly again, it just means you put things on hold for a bit in order to take care of yourself.

You deserve that. You deserve some “me” time. Don’t let MS cause you to give up and stop believing in who you are. You matter more than you realize.

Get your oomph back

Most of the time when in pain or dealing with an onslaught of symptoms, you don’t feel like doing anything. The simple act of getting yourself up in the morning, making your bed and showering to begin the day can be daunting. I guarantee you that if you chose to wait until you “feel like it” to get out of bed, it would never happen.

You can’t allow your feelings to win in life and determine your day. You wouldn’t get anything done. It takes strength to stand up to your feelings…especially the ones that lie to you saying that you can’t do something or that you are worthless and of little importance. I describe strength as that little bit of oomph you give when there’s nothing left to give.

There have been days when I have lost my oomph. It’s a slippery little bugger and an easy thing to lose, that’s for sure. I lost my oomph just the other day. I’m not sure where it went to hide…maybe under the bed, or in the closet, or under the refrigerator along with all the ice cubes I keep kicking under there when one falls to the floor. It hid really well though and took me a bit of time to find it.

You know where my oomph was? It was right here inside me the whole time.

Michelangelo, the great painter, sculptor, poet and engineer knew that all too well. When he was selecting marble to use for the statue of David, he had his choice of the finest marble around but settled for what was considered a ruined stone. All the other sculptors rejected the flawed looking piece of marble considering it to be of no value. Do you know why Michelangelo chose a piece others didn’t want? Because he looked inside the stone and saw a masterpiece. He found the beauty and strength within the stone.

You are strong and inside of you is a whole lot of oomph waiting to break out. You don’t have to be perfect or flawless…you just have to be YOU. The strong and beautiful YOU that you are!

A little bird told me

I woke up this morning to a bird singing outside my window. That’s great except he was singing so loud that I was awakened from the part of my night (rather early morning) when I was actually asleep. As I lay there in the bed not wanting to get up, yet unable to sleep, I’m almost positive I heard that bird talk. I could have been delusional from a lack of sleep—that’s always a possibility—but regardless, I heard it talk. Not bird talk either. It was “people” talk; lots and lots of people talk.

This bird, which I have officially named Tweets-a-lot, told me that you get discouraged some times. That you have days when you feel as if life has flipped your world upside down and inside out. That your plans, dreams, hope have all turned around, changing your future more than you thought could ever happen and have been causing you to feel overwhelmed.

You fight, you struggle, you cry, all in an attempt to wiggle free from a disease that is holding you captive, but you find no relief. People come along giving you an ole “pep talk” to help you out of this emotional roller coaster, and although you appreciate them taking the time to share, their words of encouragement seem to discourage you even more. You feel like a failure. Life has changed too much and you weren’t prepared for the change.

You spend hours and days looking back at what once was but the freedom is in the what will be. You have a future ahead of you, a world to be explored, people to meet and experiences to be had. You can’t do those things chained to the past and always looking back. You have to let go of what once was in order to live in the now and become a part of what will be.

So take it from me and the little bird outside my window…you’re hurting, not defeated. You’re broken, not destroyed. You have worth and tremendous value. You are perfect just as you are. Now is not the time to give up. Swim through the tears and refuse to drown.

believe

I believe in you

I didn’t get this far in life alone. I had help…and lots of it. The support of family, friends, teachers, coaches, doctors, pastors, neighbors and strangers were invaluable. At times when I was impatient, they helped calm my emotions; when I was filled with fear, they showed me I was stronger than I could have ever imagined; when I felt hopeless, they encouraged me; when sad, they made me smile. I couldn’t have made it by myself. Continue reading “I believe in you” »

Multiple Sclerosis and me are not a good fit

Some things just don’t go together, like peanut butter and mustard or swimming and lightning. Or how about music and ear plugs or driving and texting. Something else that doesn’t go together is Multiple Sclerosis and me. We are just not a good fit, the two of us. It’s a constant battle of what I want to do and what MS will allow me to do.

I still find myself over doing things and pushing myself beyond what I should be doing. And every time I feel the effects of it later. You would think by now I would know not to push so hard, but I seem to do it any way. Sometimes it’s because I just want to fit in with everyone else. Other times it’s because I still think I’m invincible. And then sometimes it’s because things just need to get done and I’m the only one to do them.

It’s important to know your limits and take time for yourself. To treat your body with care. Our bodies need more care than most and we have to be sure to not over do it. We all get busy. We all push too hard. We all forget at times just how much our body has changed because of MS. But we all need a break…a vacation from MS. Is that even possible? Taking a vacation from a disease that just won’t go away?

Maybe I can’t rid my day of MS, but I can  purposely give myself a break and do something just for me. I’m going to pamper myself and not lift a finger. No cleaning up messes. No work whatsoever. Just me time and coffee. Even if it only lasts for 30 minutes, I’m going to do it. Even if that means locking myself in the bathroom or hiding out in the closet…I’m choosing to step away from the chaos and rest. I’m choosing myself over MS today.

Every day seems like moving day

Packing up your house and moving hundreds of miles away can be a daunting task for a healthy body. Add Multiple Sclerosis into the mix and it can become terrifying. That’s not an over exaggeration either.  Anyone who has moved can testify to that. The energy it takes to box up you entire life, load it into a moving truck and then unload it a few days later, wears a body out. It is my job now to make sense of the mess and boxes as I work to put my life back into order.

It’s kind of the same thing when diagnosed with MS. It’s as if one day life was going great and plans were set…then bam, it’s time to pack up and move from your normal, ordinary way of doing things into a new way of living filled with uncertainties almost on a daily basis. Sometimes those shifts are easy to make. Sometimes they are the hardest decisions you could ever imagine possible.

I still remember the day I started using a cane to help me walk. I was so stubborn at first. I knew I needed something to help me because I was stumbling and wobbling about, but I just couldn’t break down and get a cane. My doctor was the one who made it clear I needed to get one. She told me that a broken bone was not near as easy to fix as broken pride. Boy was she right.

I have had that same struggle with each major life changing moment along with way due to MS progressing and causing me challenges. Going to a walker was another huge move that I found hard, then a wheelchair. The wheelchair was a really tough decision.

I have also had tough changes to make around my house to make sure I’m living as safely and as comfortably as possible. Things like shifting to using lighter silverware to eat from since my old set of forks and spoons were heavy. Or placing my dishes on lower shelves for me to easily reach on my own. Or having grab bars installed in the shower. Or adding a ramp to the entrance to my house.

There are so many changes we make as this disease progresses. One thing I have learned over the years, MS will shed you of your pride one way or another. It gets chiseled away little by little. You would think by now I would be pride-free, but I still have a hard time asking people for help. Not in everything. But sometimes I still find myself just wanting to do things on my own…even if I have to struggle in the process. And I don’t think that’s a bad thing.

It’s okay to have a stubbornness in you that refuses to give up. It’s okay to ask a friend to allow you to do something even if you struggle in the process. It’s okay to try, try, and try again all on your own. But it’s also important to know when to ask for help. There’s nothing wrong in asking someone to help you do something. The asking part gets easier, trust me. And besides, from my experience, people really do want to help. Many times they just don’t know what they can do so they pull back and do nothing. When you open up and become honest with others about your true, genuine needs, most are ready to jump in and be a support. We just have to ask.

And to the ones that aren’t a help…you learn who they are fairly quick and that’s when you start to lighten your load. I’ve throw a few boxes off the truck in my lifetime. Make sure the people around you are a support and not a hindrance. It’s okay to lighten the load. I’ve had to shed a few people from my life because they caused me more trouble than helped.

Moving is tough…but it’s also rewarding. You learn who your true friends are in the process. Not may people are going to carry a heavy couch up three flights of stairs for you. Hold onto those people and be sure to let them know how much you appreciate them. Sometimes we forget to tell them.

Living a life of thanks with Multiple Sclerosis

Being thankful when you’re hurting seems like an impossible thing to do. How in the world can anyone live a life of gratitude in the middle of a life of pain? You may be looking at everything happening in your life right now and thinking I’m crazy to even suggest such a thing. Being thankful with Multiple Sclerosis on top of everything else going on in life? Yeah, right!

When you look around all you see is pain and hard times. You can’t see anything worthy of thanks. Tears happen way more than smiles. I get it. I understand how overwhelming and difficult it is to live a life of constant change and uncertainty.

Do this for me…take a moment, pause and look back at your life. Look at everything you have come through over the years. You have faced circumstances that seemed impossible to others as well as yourself, but you made it through those times. You have seen heartaches and heartbreaks. You have walked through hell itself more than once. Most of those times you don’t want to relive, but as you look back you find things to give thank for. After all, you endured and didn’t give up. The strength and wisdom you gained during those times are lessons worthy of thanks and gratitude.

Giving thanks when you’re hurting is something most people don’t want to do, just like most don’t want to go to the dentist for a root canal or start a new diet, but the rewards are worth it. You can’t give up hope and allow the weight of your current circumstances keep you from seeing that life is filled with more than just momentary pain. It’s filled with beauty too.

Pain has a way of changing our lives for the good if we let it. You don’t have to give thanks for Multiple Sclerosis, but you can be grateful for the things it has taught you and continues to teach you. When you approach life with that kind of thinking, you find that being thankful is not only possible but doable.

Find three things you are thankful for today. You can have a hundred thing to want to complain about but choose to focus on those three good things. Tomorrow do the same thing…then the next day and the next day do it again. I challenge you to a week of gratitude. Can you make it through an entire week focusing on things each day worthy of thanks?

I’ll start…three things I’m thankful for today
1. a good cup of coffee to wake me up after a night of no sleep.
2. the beautiful people in my life that go out of their way to help me do the things I can no longer do.
3. that my move to Alabama went well and I’m starting to get my house organized and feeling like home.

hero

You are an MS hero

I’m not ashamed of my story. I’m not ashamed of the life I live. I’m not ashamed of my problems, struggles and hard times. I wasn’t before I had Multiple Sclerosis and I’m not now.

We live in a world filled with people who pretend their life is full of only sweetness and that problems simply don’t exist in their world. They think that denying all pain and problems is what a positive attitude is all about…but it’s not. There’s a difference in smiling through the pain when faced with difficulties and in hiding the fact that you’re hurting simply because you can’t bear someone knowing that your life isn’t perfect or that you need help.

We have this inner desire to be accepted and liked by others but don’t hide the realness of who you are just to fit in. That kind of “fitting in” will fade away and you will be left wondering where the people went as time passes. True friends accept you for you…warts and all.

There are times I might share some TMI (too much information) moments…and I’m okay with that. If I want to tell a poop story, I do. I’ve told neighbors, strangers, bosses, friends and family some crazy TMI moments when asked how I’m doing or what’s going on in my life. Sometimes the stories come tumbling out of my mouth before I even realize what I’m saying, but I’ve never been one to hide how I feel or what’s going on in my life.

Why do I do that? Because if I don’t share the reality of MS with others or talk about the struggle I’m going through, how will they ever learn or even know when I need a hug, some encouragement or help? They aren’t going to learn about MS by watching a movie or going out to eat with friends. Most won’t even look things up for themselves online (no matter how inaccurate the information may be) unless it affects them personally. They learn by asking questions and by watching us as we deal with our daily struggles with MS. Our lives are a walking billboard and we get to choose the message on display.

It can be a message of denial and pretending to be okay, but people will never learn anything if you cover up your needs and pains. Asking for help, sharing your problems, opening up your heart, talking about the difficulties…that’s what’s needed to get the message out. Not in a complaining, “woe is me” kind of way but in an “I’m in a lot of pain today and having trouble thinking, can you help me get a few things at the store” kind of way.

You can’t be ashamed of your life or of the fact that you are living with MS. Embrace the person that you are and use your life as a living example of how a person can rise up in the struggle. It’s okay to have a melt down. It’s okay to fall apart. It’s okay to have a bad day. Real heroes do. And you are a hero. Don’t hide your cape under a boring t-shirt. Wear it proudly and rise up to become the warrior you were meant to be.

face today

Face today with courage

I woke up this morning with this one thought on my mind…you can’t give up, you have to keep hoping.

Many of you are facing some very difficult times right now. You don’t know what to do or who to talk to. It may be Multiple Sclerosis related or something else in your life that has brought such pain that you aren’t sure how you’ll make it through. Don’t allow your day to become so focused on the pain that you lose sight of all the good you have around you. People really do care about you, even when you think they don’t. You are loved…dearly loved!

If I could, I would sit down with you and we could cry over a giant chocolate muffin or slice of cheese cake. Sometimes that’s all you need…a moment to release the floodgate of tears in order to relieve the pressure that has been building up.

Keep hoping…face today with courage and a smile. I’m proud of you and the strength you carry. Show the world, and MS, just what you are made of.