Fight on, oh mighty warrior

Multiple Sclerosis is weird. You can wake up one morning feeling okay and the next wishing you didn’t wake up at all. It messes with your body, your emotions, your relationships, and your job. It has this way of touching every part your life.

MS is definitely not a disease you can keep to yourself. We try though…don’t we? I know I do. I try hard to keep it neatly contained in its own little space but it doesn’t seem to stay where I want it to.

If only people could see inside my life for a day and experience not just the physical symptoms of MS, but the emotional, relational, and financial challenges it brings along with it.

MS is something I wouldn’t wish on my worst enemy, but it is something I wish everyone could experience for a day so they would have a bit more understanding, compassion and patience with me. This way, when I’m having a bad day, I don’t have to work so hard trying to explain myself and having to convince people that my pain and struggles are real.

Today I woke up and my hands wouldn’t cooperate. The tremors were a bit more intense than I have experienced in times past. As a matter of fact, my entire body feels like an earthquake has exploded in 10 different directions. Nothing is working as it should. But I peck out my thoughts and send my heartfelt message of encouragement to you because I don’t want anyone to feel defeated or hopeless. I don’t want anyone to give up.

If I can do it, you can do it. We got this.

You are my hero because you fight battles every day that no one will ever see or know about. You wield your sword and fight gallantly even when your knees buckle under you and it’s hard to hold your head up. Never doubt, not for a moment, your strength because even on your weakest days you are strong.

Fight on, oh mighty warrior. Fight on!

hearts

Words to live by

I find that the older I get the more comfortable I become simply being me. I have changed a lot over the years. I think we all have. Having Multiple Sclerosis has taught me to be more selective in where I focus my energies. I want to always be learning and growing as a person, to be filled with goodness and at peace with the person that I am.

I read something this morning that I feel is just too good not to share. This quote is something both raw and beautiful, something that speaks of the heart of many today…me included. It was penned by José Micard Teixeira.

“I no longer have patience for certain things, not because I’ve become arrogant, but simply because I reached a point in my life where I do not want to waste more time with what displeases me or hurts me. I have no patience for cynicism, excessive criticism and demands of any nature. I lost the will to please those who do not like me, to love those who do not love me and to smile at those who do not want to smile at me.

I no longer spend a single minute on those who lie or want to manipulate. I decided not to coexist anymore with pretense, hypocrisy, dishonesty and cheap praise. I do not tolerate selective erudition nor academic arrogance. I do not adjust either to popular gossiping. I hate conflict and comparisons. I believe in a world of opposites and that’s why I avoid people with rigid and inflexible personalities. In friendship I dislike the lack of loyalty and betrayal. I do not get along with those who do not know how to give a compliment or a word of encouragement. Exaggerations bore me and I have difficulty accepting those who do not like animals. And on top of everything I have no patience for anyone who does not deserve my patience.”

butterfly wings

Soaring with butterfly wings

Do you ever feel weird? Like you are not normal…if there is such a thing? I know I sure do. I tend to think differently than most people. I find humor in just about everything. If you hung out with me, you would find me laughing at dropping my plate full of food on the floor, joking about stumbling on invisible cracks in the sidewalk, and giggling because I lost my keys for the hundred-millionth time.

At one time I lived life like a caterpillar. The only thing I could see day in and day out was the leaf I was sitting on. My world was small and limited to how far I could inch myself around. But then a transformation happened.  It took time, but I grew the most amazing and beautiful wings. They changed my life.

As I spread my newly found wings and flew above the trees, I found the world to be much bigger than I had ever imagined. I saw not just my leaf, but thousands upon thousands of others too. There were leaves and flowers and oceans and mountains. My leaf  was no longer my focus. There was an entire world to explore and discover.

The other caterpillars in my tiny little space on the tree didn’t like that I changed. They wanted me to stay who I was and to keep doing all the things I did before. But once you find your wings, you can’t go back. I discovered that I liked being weird. I liked the beautiful butterfly I had become.

Much like the caterpillar, many times we get stuck in our troubles and struggles and only see life from a small place. We perch on our leaf and see only our pain, frustrations, difficulties and troubles.  We convince ourselves that we are comfortable where we are not realizing that there’s so much more to living.

It’s time to become the beautiful butterfly that you are; to spread your wings and fly into the wind; to see life from a place above Multiple Sclerosis, financial difficulties, relationship problems, pain, and stress on the job. I’m not saying to pretend those things don’t exist, just let your focus shift to find the good around you, even in a chronic disease.

Can you think of one good thing that has happened in your life because of MS? I know you would have no problem coming up with pages of bad, but name something good. For me I would have to say simplifying my life by weeding out the work and people that I didn’t need around me became a good thing. The process was tough, but in the end I found I am much happier because of it. Also, I gained new friendships with people I never would have met before, I am able to spend more time developing my artistic skills through painting and writing, and I no longer have to wake up before the sun to the buzzing of an alarm clock.

Be thankful for the good. As you do, you will begin to see more and more good around you, and before you know it you are no longer seeing life from the perspective of a tiny leaf, but from the wings of a butterfly soaring in the wind. Be that butterfly!

Shove Multiple Sclerosis out of the drivers seat

Weather can be so unpredictable. I would love to be able to tell it to snow on the hottest day in July, or to rain when not one drop of water has been seen for months, or to make a storm dissolve and disappear. But no matter how hard I try, I can’t make those things happen. The wind didn’t ask me which way to blow today and the sun didn’t get my permission to paint the sky purple and red.

I think the weather is just as unpredictable as multiple sclerosis. One day you may wake up feeling as if you could conquer the world and other days you feel as if the world has conquered you. No matter how prepared you think you are or how much you try to guess what tomorrow may bring, the unplanned and unexpected happens. If you haven’t figured it out yet, the crazies come when you least expect them.

Overnight, MS seems to have some kind of party in my body, or a revolt (I haven’t figured out which one), causing radical changes that I hadn’t planned for. If I could choose, I would make it all go away. There are days I would love to be able to tell my legs to march forward or my voice to speak louder or the pain to take a vacation, but I can’t simply wish my MS away. That would be wonderful if I could.

If something isn’t working, don’t get down on yourself or allow your emotions to overwhelm you with fears and worries. You are living in a different world now with a different kind of “normal.” The only control you have is in how you respond to the unpredictable and how you react to the changes. Believe me, you will have plenty of opportunities to work on those things. Some days I’m a pro at it, other times not so much.

The most important thing I have learned is to be thankful for each new day I am given and to cherish the people in my life. Those are the things that really matter anyway. You can’t relive yesterday and you can’t live tomorrow in advance…all you have is right now, this very moment. Make the most out of every second of it.

Don’t give MS the satisfaction of consuming your day and overloading your emotions. That’s the one thing you do have control over. So shove MS out of the drivers seat and you take the wheel. You’re in charge of your today. You decide how fast you go, if you need to pull over into a rest stop for a break, or if you take the scenic route.

I’m spending my day stuck in the mechanic shop getting a flat tire fixed surrounded by the smell of rubber tires, grease and stale coffee…but I found a crossword puzzle to occupy my time. And did you know the first product Motorola started to develop was a record player for cars? The most famous record player then was the Victrola, so they called themselves Motorola. Just thought you might like to know. (grin)

When accidents happen

Sometimes I laugh at myself, like yesterday when I accidentally dropped a cup of flour all over myself and the kitchen floor. Laughing about it was so much better than crying. Besides, tears mixed with flour would have created a sticky mess.

I have accidents all the time. I trip, fall, misplace things, forget appointments, and have lots and lots of mishaps. Accidents seem to be synonymous with Multiple Sclerosis. Some of us have more than others, but they seem to just be a part our life now.

There is one accident though that I hate more than any other. I hate when my bladder malfunctions and causes me to leak all over myself. I know people don’t like to talk about bathroom stuff. It seems to be a topic many avoid, but it’s a real problem with MS and something more people need to know about.

Thankfully two years ago the doctor recommended I get a suprapubic catheter surgically inserted. I am glad I had the surgery. It’s not maintenance free like some people may think though. Now I live with a tube coming out of my belly that has to be changed every month and I deal with a urinary bag attached to it.

No more accidents in the middle of the night or even during the day for that matter, but now I have the job of lugging a bag around with me and keeping it clean so it doesn’t smell over time. Since I’m in a wheelchair it’s easy for me to conceal a bag, but you have to think about where you will keep it. Will you wear it around your waist using a belly bag, on your leg with a leg bag, or in a pocket on the side of your wheelchair with an extension tube attached to a bag?

Since the muscles that control my bladder do not function properly and I have completely lost feeling in that are of my body, a suprapubic catheter was the best solution for me. I tried self catheters and I know many people who are successful using them, but my hand weakness and tremors make it impossible to manage. There are also some mechanical devices available that can help people control their bladder with meters, wires and button, but for me they wouldn’t have worked.

One good thing about me having the catheter is that I don’t have to rush to the bathroom every couple of hours, no more accidents in the middle of the store when I’m out and about, and no more sleepless nights because of multiple bathroom trips. Well, at least no more puddles on the floor.

Accidents are going to happen no matter what I do. Let’s see if I can make it through the day today without one, but if I do have one I will make sure to laugh about it. I hope you are able to do the same thing. Find something funny in the moment.

Dear Mighty One

Dear Mighty One…

Dear Mighty One,

I know you have been through a lot of pain and frustration over the years. Some because of multiple sclerosis, others simply because of life itself. Each day seems to have its own set of obstacles and struggles different from the day before, yet you keep pushing forward refusing to give up.

On days when you are exhausted, in pain and wanting everyone and everything to leave you alone, your determination and perseverance keeps pushing you through. Your tears are noticed by few because even in the hard times you somehow find something to smile about, something to hope for.

Although it isn’t easy, you have learned to enjoy the little things, to appreciate those who have stuck around (your real friends), and to not take living for granted. Sometimes your thoughts wander to the dark side and sometimes all you know to do is cry, but even warriors cry.

Regina Brett says it so eloquently: “It takes a strong person to cry. It takes a stronger person to let others see those tears. We need to be tough enough to be tender, no matter who is watching.”

You are rising above all the trouble life has piled onto you. I see the strength you carry and admire your courage. I know you don’t hear it often enough, but you are a treasured gift to this world. You are important and you matter.

From one Mighty One to another…keep standing and never give up on YOU. Don’t be afraid of tomorrow. Keep taking things one day at a time and be sure to pause long enough to take care of YOU, because you are THAT important.

It’s going to be okay. You are going to be okay. Life is going to be okay. You are not alone.

xoxo

P.S. Remember, it’s okay to say “no.” Don’t ever be ashamed of needing to rest or for choosing to take a break.

Living with a chronic illness can be extremely lonely

I think one of the hardest things about living with a chronic illness 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 a chronic illness 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 now how I’m feeling.

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.

Living with a chronic illness can be extremely lonely and amazingly enough it’s possible to feel that way sitting in a room all by yourself as well as in a room full of people. Sometimes you just want someone to sit by your side and simply be there, to give you a hug, to listen, to care.

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. Sending a virtual hug your way today.

Living in an upside-down world

Three years ago I wanted to do something to help others like me who live day in and day out with Multiple Sclerosis. I didn’t actually know if the things I had to share or write about would make a difference or even matter, but I knew I needed to try. If not for others, at least for my own sanity and peace of mind.

So, I started writing away even though I was unsure who would actually read what I had to say. I know that sometimes I get serious and real about what things are like for me and others with MS. Other times I can be a bit goofy. But my hope has always been to help others feel less alone and less scared about living with a chronic illness, especially those with Multiple Sclerosis.

I have been amazed at the growth of Positive Living with MS over that short time, not just among other MSers but also with caregivers and people who are dealing with other chronic illnesses and diseases. We all have something in common though…an unexpected disruption to our lives that brought along with it a whirlwind of change, chaos and pain.

We didn’t choose to have our lives flipped upside down. We didn’t choose a life of constant struggle. Yet somehow it found us and here we are living in a world that we know nothing about. We research. We dig for answers. We hope. We cry. We even get discouraged.

But you know, no matter how low our emotions get or how bad life becomes, somehow we find the strength to keep going. Somehow we get through just one more day. Somehow hope fills our hearts when the weariness grows deep. Somehow. Somehow.

I don’t know how MS really works or why some people have more challenges and difficulties in life than others, but I do know that no matter what you are facing or how hard things get, you are not alone. I am here along with thousands of others to bring encouragement, hope and peace to a broken and chaotic life.

Together we love, help, dream, and live for a better tomorrow. Together we stand arm in arm holding each other up as we swing our swords in battle. What a sightly bunch of warriors we are. Bruised, wobbly, weary, tired…but somehow less afraid of tomorrow.

If you feel sad today, know that you aren’t alone. If you feel you are losing hope, hang on a few more days because the sun will come out and the birds will begin singing once again.

You are amazingly strong, resilient and a fighter even on your weakest days…especially on your weakest days. Keep standing. Keep hoping for a cure. Keep sharing. Keep fighting.

To-do lists aren’t always so doable

Have you ever had a time when you had full intentions of getting something done before the day was over, but it didn’t happen? It was at the top of your to-do list, written on several post-it notes and you even had an alert on your phone to keep you reminded, but then you sat down on the couch exhausted from the day and there was nothing left in you to do anything more. It seems once I pull my shoes off and sit down, my to-do list turns into a to-don’t one. Whatever I had written down just isn’t going to get done.

That happened to me yesterday. I had great plans of cleaning the bathroom and running a few errands. Both seem simple enough, right? And they are, until fatigue decided to pay me a visit.

Once fatigue shows up, you can forget me being able to get anything done. I can tell you this, it is one of THE MOST unwelcome guests in my life. MS being the ultimate first. Fatigue can happen early in the morning (sometimes as early as me opening my eyes with the morning sun), after my morning shower, part way through the day, or once lunch is over. Its schedule is random and it seems to have no plans of sharing the itinerary with me.

I have to admit, MS has taken some of the joy out of surprises. I think it brings more my way than my first boyfriend ever did, and that’s a lot because he would bring me flowers, gifts and notes of admiration ALL THE TIME. At least the things he brought me were lovely. I can’t say that about MS.

I have had to learn to go with the flow on a daily basis. It’s not an easy thing to do, but it is necessary in order to keep a positive outlook on life. One thing MS has done for me…it has taught me to value life way more than I ever did in the past and to not take things like being able to work for granted. Work was my passion, but now that my career is a thing of the past, living has become my new passion.

MS changed things. It made life difficult in some ways but it also gave me a different perspective on life itself. I see how precious each day is, how special caring people are and how short life can actually be.

I woke up this morning to a new day. My to-do list, post-it notes and phone reminders are ready, but I’m okay if I need to shift things around or if I fall asleep in the process and miss out on getting anything done at all. Life is too short to get caught up in the land of lists.

Enjoy living in the NOW of today. It only comes once.

I may not be as strong as you think I am

Hi, my name is Penelope and I have Multiple Sclerosis. (I feel like everyone in unison should say “Hello Penelope” like in those support groups.)

I am a real voice of a person living with a chronic illness. I can be a bit rough around the edges, creative, funny, and slightly opinionated. Sometimes people make the mistake of thinking that since I am so open about the difficulties and struggles I face, that I’m a super tough, amazingly strong person. Somehow they assume that the problems they are facing, I never face. That nothing gets through this armor I wear.

But it does.

I get tired and at times can become overwhelmed with all the challenges that MS causes in my life. There are moments when the thoughts swirling around in my head are all screaming at me in unison to quit. There are times when it takes everything I’ve got just to drag myself out of bed, open the curtains and welcome a new day.

I have moments of doubt that I really matter especially when my body is weak and I am struggling with the simplest of tasks. Things like holding a cup of coffee, washing my hair or tying my shoes.

When it takes every ounce of strength I can muster up just to take another step, it’s at those times that I find myself clinging on to hope. For me, hope is what gives me the strength I need to keep going when all I have left are tears.

Hope that my voice about life with MS will be enough to make someone stop for a moment and realize that what they are going through is real and not just all in their head.

Hope that the things I write will be a right-on-time read for someone needing a little bit of encouragement, support and a gentle hug.

Hope that lives will be changed through the things I say and the laughs I give.

Hope that people will begin speaking more freely about what life is like for someone living with MS.

Hope that those without MS will gain a deeper understanding about the challenges we face.

Hope that tomorrow with be better than today.

I’m here to say that MS is real and so is the struggle we live through. It can break even the strongest of the strong. Sure, we get pretty good at slapping on a smile to cover up the emotional and physical pain, but that doesn’t change the fact that MS hurts. It really hurts.

The important thing is to not let the pain or the daily troubles you are experiencing become so big that MS is all you are able to see. Pause and look around you. There is a world to be explored and people to meet. There is a life to be lived…and you are the one to live it. Strap on your armor, hold your head high, take a deep breath and step out.

I may not be as strong as you think I am, but I know I’m not alone. There’s an entire army of us brave and courageous MSers who never quit as we face the impossible each day. Together we are standing strong. Together we are doing it one hope at a time!