shoes

For the love of shoes…

I love shoes. I really do. Even though I’m tall—over 6 foot—I would wear 3 inch heels proudly. When multiple sclerosis came along, it messed up my shoe choices. I could no longer wear heels because my numb feet and legs were unable to manage even the slightest of wobbles or unsteadiness. I also had a tendency to walk out of a flip-flop without even realizing I had done so and slip-ons, well, let’s just say they wouldn’t stay on.

I remember the day I decided to pack up my unwearable shoes to donate to charity. It was a hard hitting blow of reality for me. One I didn’t want to face but knew I needed to undertake. I couldn’t walk in most of the shoes I owned and they were just filling up space in my closet, so instead of seeing them every day and feeling sad because I couldn’t wear them, I decided to pass them on to those who could. It was a tearful time, but a freeing one as well.

And for anyone thinking, “Oh, just save them to wear anyway since you’re in a wheelchair.”

That’s not actually as simple as it sounds. It’s amazing how unstable my feet, ankles and legs are even from a seated position in a wheelchair. Flats are my only option, although I have been known to leave the house barefoot more than once. Besides, I can still look stylish in flats.

I knew by giving away my unwearable shoes, I would be able to bring smiles to people and that someone would be walking tall and proud in a new pair of heels—new to them at least. That made my heart smile. Knowing that I was helping someone else made my day brighter.

Over time, I have realized that there are moments when reality knocks on your door and other times when it smacks you upside the head opening your eyes to what you’ve known for quite some time…that multiple sclerosis has changed your life. But don’t let MS change your heart by allowing it to grow bitter and resentful of what you are no longer able to do.

I guess some people could see me giving my shoes away as not being hopeful enough. That I am giving up and allowing MS to call the shots, but I don’t see it that way. To me, if I’m not using something, I would rather give it away to those that can than keep it stored away for a future time that may never come.

That’s reality, not hopelessness…and besides, they are only shoes. If the time should ever come when I’m able to walk free or even dance, at that time I will go shopping and buy a new pair of shoes.

Life is so much more than shoes and, oh, so much more than things stored away. Life is for living now….today. Don’t hold onto what used to be. Move forward into the now and live, letting go of those things that hold you back.

My multiple sclerosis body is in a constant state of emergency

I hate when a storm knocks the power out unexpectedly. I have a flashlight handy for those moments along with some matches and candles to help get me through at least a few days of the pending chaos. If it should stay out longer than that I also have a small bottle of propane that I can use to cook with. It’s left over from my camping days.

Living with multiple sclerosis is much like those power outage moments. Our Central Nervous System (CNS) is short circuiting on us due to downed and broken lines. When our nerves suffer damages like that it has a tendency to affect our ability to walk, talk, eat, breathe, and even speak. It would be amazing if we could simply plug into a backup battery system or a generator to restore the power until our CNS could be repaired.

Workers are dispatched the moment an outage is discovered, but most of the time the damage to our CNS is unable to be repaired thus causing our bodies to remain in a constant state of emergency. It’s not easy, but we adapt over time.

We have learned to store up extra candles, flashlights, propane tanks and matches for any possible future outages, but those things only last for so long. For many of us, our spare flashlight has already burned out and our candles have melted.

You may be experiencing an unexpected outage right now. Those times can be scary and overwhelming. It’s not easy watching life change like that, but take it from someone living with MS…sometimes things seem to get worse before they get better. Hang in there. You can’t give up now. The storm has to come to an end.

You know that old saying “when the going gets tough, the tough get going”? Well, that’s you. You’re tough. Your strength shines through every single day. You are going to make it through this storm and you are going to have an amazing story to share.

checkout

To the person behind me in the checkout lane

To the person behind me in the checkout lane yesterday at the grocery store:

As you could easily see, I am in a wheelchair. Not because I lack intelligence, am damaged, or am part of a subclass of humans. I use a wheelchair because my legs don’t work properly due to a chronic disease that has damaged the nerves in the Central Nervous System of my body. Maybe you’ve heard of Multiple Sclerosis, or MS as it is commonly referred to. If you haven’t, I won’t hold that against you. A lot of people haven’t heard of it, or if they have they don’t actually know what it is. Kind of like how I didn’t know what a self-absorbed, judgmental, narcissistic person was until I met you.

I heard your long drawn out sigh as I took longer that 5 seconds to pull out my credit card to pay for my groceries, I heard the comment you made to your friend about disabled people being a burden to society, and I noticed how you so conveniently refused to make eye contact when I turned to look your way.

At first I was going to say I’m sorry to you and your friend, but then I thought…no, I’m not sorry. I’m not sorry for any delays in your schedule because you ended up behind me in line. I’m not sorry for the discomfort you felt watching me fumble with the zipper on my purse or because I took longer than you wanted while pulling the credit card from my wallet. I’m not sorry for taking time to greet the cashier with a warm smile and pleasant conversation even though I stumbled with my words. I’m not even sorry for being in a wheelchair or having MS.

You know what I am sorry for? I’m sorry for people like you who are so shallow that you only think of yourself, and in turn miss out on many beautiful moments in life. I’m sorry for whatever happened to you in your childhood or in times past that caused you to become so callous and smug. I’m sorry for how alone you actually are inside and for the hurts you are secretly carrying around with you everywhere you go. I’m sorry that the only way you can feel good about yourself is to put another person down.

I’m sorry because you are the real disabled…not me. I’m just someone living with MS.

Sincerely,
Penelope Conway
(Is this one of those times I can hit someone upside the head and blame it on MS?….Oops, sorry, that was an involuntary spastic moment.)

The multiple sclerosis phantom itch is real

I have this incessant itch on my upper left arm that will not go away. I try to scratch it, but oddly enough I can’t seem to find its exact location. Just when I think I’ve found it, nope…I’m wrong. I have to be careful not to scratch that area too much because my arm is completely numb, has been for a few years now, so I could easily rub it raw without even realizing the damage I’m causing.

That very thing happened to me last year. I way lying in bed scratching away when I happened to look ay my hand and saw blood. My nails had been clipped earlier in the day and I didn’t realize that a tiny sharp corner was missed. I cleaned myself up but then realized how important it was to be more aware of what I was doing.

One thing I can say for a fact is that multiple sclerosis phantom itches are a real thing. It’s one thing to have a mosquito bite you causing a defined visible welt that can be treated with some anti-itch cream and a few strategically planned scratches just to take the edge off, but to have an invisible itch caused by an invisible monster who chooses to make a feast out of the myelin hidden from view in my central nervous system thus short circuiting my nerves, well that’s just downright dirty. Trying to explain that kind of itch isn’t an easy thing to do.

Besides my arm, I have an itch that shows up from time to time on the left side of my face. That one seems to show up mainly at night and isn’t as annoying as the one on my arm which even just now is begging for attention. It almost become a mind game because it seems that the more I focus on it the worse it becomes. I have to purposely shift my focus to other things just to calm it down. It doesn’t take it away complexly but it does help. Admittedly that’s not an easy thing to do.

I have other weird sensations that defy reality as well. At times I have this feeling that there is water on my chin but when I attempt to wipe it away, there’s nothing actually there. Then there is this cold sensation on my right foot that feels almost as if an ice cube has fallen on it. It doesn’t hang around too long, but even for the short time that is does show up, well that’s enough to drive me nuts.

MS definitely keeps life interesting. Each day is a new adventure into the unknown. Just know that no matter what you are experiencing, you are not going crazy and most certainly not alone. There is someone else out there who is experiencing the same thing too.

What phantom sensations have you experienced?

change

Changing with the unexpected

I’m sitting in my favorite chair this morning as I write my thoughts down to start the day. The air is cool. My favorite throw blanket is lying across my lap and I’m watching some deer in my back yard munching on dew soaked grass. I have a hot cup of coffee with me and my computer in my lap.

That’s a perfect morning for me. I enjoy my time of quiet solitude to collect my thoughts, reflect on times past and prepare myself for the day ahead.

Many of you live with a stable condition of multiple sclerosis. Your days are fairly predictable and you are able to plan ahead easily. You know what to expect and how to adjust to the changes throughout the day. Then there are others, much like me, who have such unpredictable days, you can’t plan well because MS changes too drastically from one moment to the next. Even in your planning you don’t plan well.

MS is a disease of change. Some deal with smaller changes, but it’s all still change. It would be so nice to know what a day will be like, to plan and be able to keep those plans, to go out with others without having to leave early, to spend time with friends without falling asleep on them. To spring clean the house, wash and detail the car, and cook a meal fit for a king. It’s been years since I was able to do any of those things. I try though, and that’s what counts. I try to do as much as I can when I can and leave the rest to tomorrow.

If you can’t adapt to change, you will find your days hard to get through. For some, it’s not easy learning to go with the flow…to ride down the river of life rather than fighting with it. It’s okay to end your day differently than you expected, leaving things still to be done. Don’t get frustrated because your house needs to be vacuumed and yet you don’t have the energy to do it at the moment. I don’t know of anyone with an un-vacuumed house that has stopped the world from spinning causing it to tilt on its axis thus ending civilization as we know it. Your day will go on and the vacuuming can wait for another day.

Choose the important things in life to be your focus rather than the things of little importance. I’ve learned that many of the things that I thought were important really weren’t. Use your time wisely and know that YOU are what’s important, not what you can or cannot do. So today, step into the changing room, put on your MS superhero cape and step out into the world. You got this!!!

You can’t give up

Life is not always full of rainbows and sunshine. It’s not all puppy dogs and lollipops. I have found over the years that it can be cruel and downright painful. It can be filled with heartaches and headaches. It has this crazy ability to knock you off your feet and leave you in a puddle on the floor. You then have the task of picking up all the pieces and making sense of everything.

Most of the time as you begin putting your life back together, you discover that you can’t seem to find all the pieces. Some of them get lost, some are found broken and some can’t be repaired. You sit there in a heap holding onto the fragments of days gone by wondering, “Is this really my life now?”

There have been times in my life when I felt the overwhelming weight of tragedy pulling me down. I have experienced the huge blows life has thrown my way as it snuck up and hit me with a left jab followed by an uppercut. It seems that no matter how tough someone is, life keeps coming, punching and jabbing. It doesn’t care if you’re rich or poor, what nationality you are, where you came from or who you know.

I have been knocked around enough to know that you can’t give multiple sclerosis the satisfaction of bringing you down. You have to get up and never give up. You may be in tears as you rise, you may be in pain, you may feel hopeless and worthless, you may be shaking in your boots, but don’t let multiple sclerosis dictate who you are or where you’re going. Don’t let the pain of today hold you back from tomorrow.

You are a winner and winners take life, along with all the “stuff” thrown their way, and refuse to quit. Winners get up, brush off the dirt, hold their head high and keep on living.

You are that kind of winner. You can’t give up on living today. I know that sometimes life can be extremely hard to deal with. I understand the depth of pain you are facing with MS. I know about the tears that no one else sees. You are not alone.

Don’t focus so much on MS and the problems it brings with it. There’s a whole world out there waiting to be explored and experienced. Yes, MS will be there with you, but don’t let it lead you. You be the leader…let it follow. Sort of like the childhood game of Follow The Leader, you lead.

This world is better because you are here. Your life truly makes a difference. You are valued, important and very much needed. Don’t give up!

Do you want to know who your real friends are?

The world is full of selfish people. Society has become so consumed with the aspiration of becoming famous and important that they overlook and ignore the countless hurting people all around. People with disabilities are often overlooked and many times pushed aside as bothersome. Ears have been closed to their cries and eyes have been shut to their pain. It seems people today are too busy to truly care for anyone except themselves.

Wallace Speers, a businessman, was standing in New York’s Penn Station when an unshaven, ex-convict walked up to him and said: “You look friendly.” He went on to tell Mr. Speers the sad story of his life. When he finished, he looked at Mr. Speers and said, “Will you do something for me? There’s not a soul in the world who cares if I live or die. Would you mind thinking about me for a couple of weeks. If I knew there was someone somewhere thinking about me as a human being, it would be worth a million dollars to me.”

At some point in life I think everyone feels abandoned by someone they thought loved them, had their back, or said they would be there. The hurt of being abandoned or forgotten by someone has this way of convincing you that you are worthless and floods your heart with pain. This past year I had that very thing happen to me. It was by someone that I had always admired and thought highly of but discovered that their words were empty and void of any true meaning or action. I doubt they will ever know just how badly their inaction actually hurt.

I have always told people, “If you want to find out who your real friends are, get diagnosed with a chronic illness and see who sticks around.” It’s sad to say, but oh so true. Living with a chronic illness brings with it this uncanny ability to weed people out of our lives.

We know all too well the loneliness and hopelessness that accompanies a life with multiple sclerosis. We try our best to push through the chaos in hopes that tomorrow will be different, and thankfully sometimes it is, but sometimes it’s not. I am encouraged knowing that my life experiences have the potential of helping ease some of the pain others are facing. If my shared life helps just one person get through their day, then it was worth every tear and every heartache I went through.

Will you do something to reach out to someone who feels all alone? It could be because of a new MS diagnosis or simply one of life’s storms that is overwhelming them at the moment. Will you be different than most of the world and walk in when everyone else walks out?

People are hurting everywhere and we can do our part to help…even if it’s only through a kind word or a smile over the internet. Share that kind word and that smile. It really does matter.

People need people. It’s a lonely world out there all alone. If I could I would personally sit down with each of you and listen to your story, give you a hug and offer a helping hand. Sometimes all we need is knowing that someone cares. I have been inundated with so many emails and messages that I haven’t been able to respond to them all, but I want you to know that if you sent me a message, I’m working on getting to it, just give me some time. I literally have over 1,200 to go through. But you are that important to me and I want you to know that someone cares. You are not alone in this journey with MS. Hang in there.

My body heals itself at such a slow pace

I have noticed a strange phenomenon since having multiple sclerosis. I don’t have a clue if it’s actually related to MS in any way as I’ve never heard it talked about, but I thought I would mention it so others who are dealing with the same thing don’t think they are going crazy.

When I get something as simple as a pimple on my face (it’s not just for teenagers, you know), it will take months to actually heal instead of days as in times past. I’ve noticed the same thing happens with cuts too. I cut my hand over the weekend and although it is healing, it’s doing so at its own slow pace. Bizarrely slow, I have to say.

In a way it kind of makes sense that my body slowly heals itself since my immune system has been compromised. It could also be due to some of the medications I take. I don’t take anything for MS itself as nothing has helped to slow down my progression, but I do take things for muscle spasms, pain, dizziness, help with sleeping and depression. A daily cocktail along with a slew of supplements and vitamins. It’s crazy because before MS I didn’t even take aspirin or cold medicine, now I have a rainbow collection of pills that would put a package of Skittles to shame.

When I was first diagnosed with MS I was taking a med called Rebif. I had to give myself intermuscular shots 3 times a week, similar to those taking Copaxone today. Those shots would bruise me so badly that over time I looked like I was being abused. I would have bruises on my thighs, arms and belly and they would take forever to heal. The crazy thing about it was that the medication would make me feel worse than MS actually did. I was medicating myself for the side effects of the medication. Such a vicious cycle.

Keeping a healthy diet helps to manage some issues, but it won’t rid the body of everything MS. I’m truly overjoyed for those that are able to fully manage MS by the things that they eat, but it’s important for people to understand that not everybody has such great results. Each person is unique with their own cellular makeup and their own responses to diets and meds.

If you face slow wound healing, know that you aren’t alone. I’m sitting here with a bandaged hand and a pimple on my chin to prove it happens.

punch

I would love nothing more than to punch multiple sclerosis in the face

When you see me, you may see my hair fixed up nicely, my makeup looking flawless, my clothes neatly pressed and my shoes coordinating with my purse. I may have everything in place from head to toe including the smile I put on and the positive attitude I carry.

But underneath all the layers, below the wheelchair, urine bag and leg braces, the real me exists. It’s a person who is dealing with an incredibly frustrating, painful, unpredictable and debilitating disease.

It’s easy to put on a good show for a few hours as I laugh and carry on about meaningless things. I can generally hold it together for a day out with friends or, as I did for years, a day at work covering up the tears and wiping them away before anyone has a chance to see them fall.

Then the moment happens when I find myself sitting alone on the couch or in the shower and I crumble into a puddle as life catches up with me. The emotional pain of living with multiple sclerosis is real. I hurt, cry, worry, get angry and scared. I think about my struggles, my worsening progression, my future and I desperately long for things to be different than they are.

That’s the human side of me…the real me. I don’t pretend to be perfect and never profess to have all the answers. Living with a chronic disease sucks. It’s hard and sometimes it feels impossible to navigate through the obstacles.

Never feel bad for feeling. Never think you can’t cry, complain or have your own pity party. Those things are all permitted. The thing you can’t do though is carry those negative, weighty feelings around with you everywhere you go.

Have your moment, crumble, fall apart, yell, scream, cry, and even punch MS in the face…hard! Give yourself 30 minutes (sometimes each and every day) to let it all out, then shift your thoughts to the good things in life…those things that give you hope and purpose.

Today may be an extremely hard day for you and you may feel like you’re walking through hell itself, but you know what they say you should do when you find yourself going through hell don’t you? Keep on going…don’t stop.

Hang in there. You are going to get through this time in your life. Let the tears fall then take a deep breath and remember, tomorrow is coming which means anything’s possible.

If only the world could see the way we live with multiple sclerosis

You have been through so much lately. You’ve crossed hurdle after hurdle going from one doctor’s appointment to the next. You’ve made your way through danger more than once in the past year alone. You’ve climbed mountains that no one even thought were scalable and yet you overcame the odds. Every day seems to present itself with challenges, but somehow you find a way to get through them.

Admittedly, You don’t always win. You don’t always cross the finish line at the end of the day, but the most important thing is that you never quit. Sometimes you find yourself questioning everything happening in your life. Sometimes the dreaded questions “why me?” and “why now?” run through your thoughts but they never seem to come with definable answers, only more questions.

What do you do when faced with a life of Multiple Sclerosis? Where do you go from here? How are you supposed to function in an able-bodied world that doesn’t seem to understand the complexities of living with MS?

The answer…you just do it!

You drag yourself out of bed each morning exhausted, weary, overwhelmed, and at times feeling completely defeated, but you muddle your way through the day anyway. Some days are better than others. Some days you can walk, other days you can’t. Some days you find yourself laughing, other days even a giggle seems impossible. But you do it anyway.

Today may be one of those impossible, unimaginably difficult days. I won’t lie to you, life with MS is hard. There are surprises around every corner; some good, some bad.

Sadly, a majority of the awareness campaigns for MS don’t actually tell the world how ugly MS can be. They show the smiles and the brave souls walking their way through a 5k with their arms raised in victory, but what about those who can’t walk. Or the ones that have trouble speaking, breathing, eating, seeing or functioning in a so called “normal” world? Why are those people never seen or shown as the face of MS?

Yes, there have been great strides made in helping people manage their MS symptoms and new treatments are being discovered that help slow its progression down—for that I’m enormously thankful—but when is the public going to see that MS isn’t just an “Oh, well it could be worse” kind of disease? When are they going to be shown the reality of what it actually does to a person’s life and body?

My hope is that some day soon people will see the reason we fight every day, but also the pain we endure. That they will understand just how much we overcome on a daily basis. That yes, we may put on a brave face, but deep inside we carry around an uncertainty of how long we will be able to wear our brave.

Every person fighting MS is brave, every one is amazingly strong, and every one is on a journey of uncertainty. We hope for a better tomorrow but we also hope for a world that will truly see MS for what it really is…a chronic progressive disabling neurological disease that has no known cure.

It’s time we let the public see the ugly side of MS and why we so desperately need a cure.