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 ABC’s of Multiple Sclerosis

A life with Multiple Sclerosis is filled with some crazy moments. It’s not a disease for wimps, that’s for sure. Take some time to learn more about the things those of us living with MS face.

A – awareness
There is still a huge lack of understanding by the general public about MS. We are not contagious, we didn’t do something to cause MS in our lives, there is no known cure and it’s not all in our head…well actually it is. Our brain MRIs prove that.

B – brain lesions
That’s just a fancy way of saying that our brain has wounds inside. Some of them heal well while others leave a nasty scar that disrupts the nerves used to make our body work. That’s the reason we do the things we do…most of the time. Some times it’s just who we are and has nothing to do with our brain.

C – cramps and spasms
Our muscles tighten up causing us great discomfort and pain. Any muscle can be affected from those controlling our tongue to our ribs to our big toe. Think of it as a constant Charlie Horse, just not always in the leg.

D – drunk walking
We have full intentions of walking without bumping into things but it seems the walls, floors, tables and chairs are our friends. They need some appreciation from time to time and we get to be the ones giving it to them.

E – eyesight problems
Our vision can become blurred, doubled, dimmed or even gone. Sometimes it’s even accompanied with pain and color loss. So if you see us wearing uncoordinated clothes or find us making funny squinting faces while reading a menu, no need to stare…that’s just how we roll.

F – falling down
We are professionals at falling. It’s our specialty. We can fall up a flight of stairs, getting out of bed, and even on flat surfaces. If there was an Olympic Sport for falling, we would be gold medal winners for sure.

G – good days and bad days
We don’t plan them…they just happen. Some days are good, some are bad and others are downright terrible. That doesn’t change over the years so if you ask if we are feeling better we don’t know how to respond. How we feel can change from day to day, hour to hour and minute to minute. Feeling better? Compared to what? Yesterday? This morning? Ten minutes ago?

H – heat sensitivity
Trips to the beach on a hot summer day, time in a hot tub or sauna, or even blowdrying our hair causes our symptoms to worsen. Air conditioning is a must. We are thankful for its inventor and would give him an award if we could.

I – IV steroids
Oh, the dreaded round of IV meds. Most of the time they help to lessen the inflammation in our brain and spine, but they create such terrible insomnia while we are on them that we may end up scrubbing the floors, power washing the house, detailing the car and painting the basement. Just don’t look at us the wrong way because they also cause terrible mood swings and have the potential of turning us into the Incredible Hulk.

J – jitters
We make a great omelet and can whip those eggs to perfection with our hand jitters. If only we didn’t keep dropping the whisk in the process.

K – krazy mixed up words
Toss our vocabulary into a blender and let the words get chopped to bits. Now dump them out and try to form a sentence or even a word…that’s about how easy it is for us to find our words at times.

L – laughing through the tears
We cry and cry often (most of the time you don’t even know it), but we laugh too and many times you will find us laughing through the tears. That’s not a sign of weakness. Our tears are just some of our strength leaking out. But don’t worry, give us a hug, spend some time with us or help us out when we need it…that’s all we need to be replenished.

M – memory problems
Sometimes it’s hard to remember schedules, appointments, names and even what someone said 5 minutes ago. Thoughts get lost more than our car keys. If only we had a “clapper” to help us find them.

N – numbness
Many parts of our body go numb much like when someone crosses their legs and their foot falls asleep. Oddly enough, we feel pain through the numbness. If only we could get them to wake up. We would gladly offer them some caffeine or an energy drink if it would help.

O – oops, oh well
Asking us to catch something when you throw it to us, and us actually catching it…now that would be something to cheer about. See, we get excited over the little things.

P – pain and more pain
Our pain isn’t because we hit our thumb with a hammer. At least that kind of pain you could see. No, our pain shifts and changes throughout the day and at times can become unbearable. So much so that even wearing socks or covering up with a sheet in the bed hurts.

Q – quiet please
Loud noises can be super annoying and seem to become amplified in our heads, so if you see us sitting in the quiet…we like that. Loud parties, restaurants and get togethers are taken in moderation so we don’t overwhelm our nervous system.

R – relapses happen
It’s just a part of life with MS…it’s called a progressive disease for a reason. It may take years for a relapse to happen or only months…though we pray for it to be years.

S – swallowing difficulties
It’s amazing how many muscles and nerves coordinate to do something as simple as eating. One nerve out of whack and we could swallow wrong. It takes concentration and effort to chew and swallow. That old saying mom use to say…don’t talk with your mouth full…we understand that all too well now.

T – tingling
Pins and needles is what we call it and they don’t go away no matter how much we try to massage that area. It’s something we learn to live with and try to ignore. But ignoring that kind of thing is about as easy as ignoring a spider crawling next to your leg.

U – UTI
No, that doesn’t stand for Under The Influence although we very well could be with all the meds we take. Our bladder causes us difficulties. It’s not something we like to talk about, but it is a reality of what we have to deal with. So when we say we have to go to the bathroom, don’t stop us. We may run you over.

V – vertigo
We don’t need to buy a ticket for an ocean cruise, we have one in our head every day. If only we could get a few Hawaiian shirts, drinks with little umbrellas in them and an all you can eat bar to make it feel more festive.

W – wheels, canes and braces
Oh the fun we get to have pimping out our walkers, wheelchairs, canes and braces. Now if someone could invent a zapper that we could use on people when they are rude to us because of our disabled parking tags or slow moving we’d be in business.

X – X-rays and MRIs
The rat-tat-tat noise of an MRI machine can be slept through. We know that from experience. Our medical charts are filled with images of our insides. I guess you could call us Super Models…we are so photogenic.

Y – yawn, yawn, yawn
We have a constant yawn from the moment we wake up until the time we go to bed. Being able to wake up rested is a fairy tale in a land far, far away that no one has found yet. It must be around the corner from Neverland or next to the pot of gold at the end of the rainbow.

Z – zings down the spine
If you want to know what it feels like to stick your finger in a light socket, just ask. Looking down at our toes while standing…zing, there it goes. A lightning bolt down the back of the neck and all the way to our toes. Maybe that’s what helps to light up the light bulb over our head when we get a bright idea.

Dear Multiple Sclerosis

Dear Multiple Sclerosis, you’ve messed with the wrong person

Dear Multiple Sclerosis,
I want you to know that you are not the boss of me. Sure, you have made my life a living hell. You may have caused me countless tears. You may be the reason I had to quit my job, have lost seemingly great friendships, and am facing unprecedented financial difficulties. You may make my body weak, my thoughts a jumbled mess, my body tremble and my vision blurry, but you will never, and I mean NEVER, have the satisfaction of stealing my hope.

Hope is what keeps me going when I feel overwhelmingly discouraged and depressed. It gives me the strength I need when I’m feeling completely worn out from fighting every day. It helps me keep my head held high and my heart strong when, in reality, I feel as if I have lost every bit of passion and courage I thought I had left.

You see, I have hope in a better tomorrow.
I have hope that one day a cure will be found.
I have hope that my life matters to the people I come in contact with, both online and in person.
I have hope that, regardless of the struggle, I will find a smile to brighten my day.
I have hope that there are still good, caring, honest, loving people in this world who are willing to stand up for the disabled to help us fight.
I have hope in the 2.5 million people in the world living with Multiple Sclerosis, that each one of us finds the strength we need to keep pushing on.

MS, I know your plan is destruction, but no matter how hard you try, I will not be defeated. I am a warrior…and that’s what warriors do…we rise up!

We may make it through our day exhausted, weary, and feeling like a complete and total wreck, but we will not give up. You’ve messed with the wrong group of people. We are fighters, we are strong, we are mighty, and we NEVER give up…hear us ROAR!

life

To whom it may concern: An open letter about life with Multiple Sclerosis

To whom it may concern:

There is an entire world filled with people who don’t understand Multiple Sclerosis. I know since you don’t live with the disease yourself it is hard to comprehend, but I hope what I have to say will give you insight into what life is like for me…giving you insight and understanding into the life of someone living with MS.

First off, I would like to say that Multiple Sclerosis is real, it hurts, it is full of challenges and struggles, and if you haven’t figured it out yet, it is invisible to a majority of the population since the destruction takes place inside the body. The effects are seen in other ways as I walk, talk and go through my day with disabling symptoms, but if you were able to see inside my body, you wouldn’t judge me so quickly. My insides are a wreck and filled with chaos.

Sure, I wear a smile much of the time, but that doesn’t mean the disease isn’t there. It just means I’m doing a pretty good job at covering it up. You see the mask I wear, but let me pull off the mask for a moment. I get angry, fearful, weepy and scared. Lingering in the back of my mind is the fact that one day my future will be drastically different than it is today. You see, MS is progressive. That means that although today I may be moving around okay, tomorrow I may not. It may take a year or 20 years, but my life is changing every day.

Please know that it hurts when you so casually decide you know what’s best for me. MS has affected every part of my life, but that doesn’t mean it’s made me incapable of making decisions. Don’t exclude me from things just because you think I wouldn’t want to be a part or because you think it would be too hard for me to do. Let me make that decision. It hurts more to be left out than to give a response of “no thank you” to an invitation. I would much rather be given the option. Please don’t stop inviting me or including me even if you get a lot of “No” replies.

Another thing that really hurts is when you tell me you know how I feel. Really? You understand the fatigue that never goes away, the numbness in my body, the pain, the bladder problems, the vision struggles? I have major damage in my brain and spine causing continued chaos throughout my body, and you want to try and compare your flu symptoms to my MS? Please don’t do that. Unless you are living with MS yourself, don’t even try telling me you know how I feel. Support me, help me, console me if that’s needed, but don’t make the assumption that you get it.

Then there’s the problem I have of you always trying to fix me as if I’m broken. I’m not broken. I’m simply living with a chronic progressive incurable disease. That means it’s not going away unless a cure is found…and no, there isn’t a cure yet. All those supposed cures you read about online, they aren’t cures. They are either symptom management techniques, wishful thinking, or money making schemes. Nothing has been found to completely remove MS from someone’s life. Nothing aside from a miracle! So your great Aunt Sue’s cousin’s friend who was cured using a combination of bumble bees, tin foil, baking soda and pine cones…I’m not interested in the recipe. Accept me for who I am. I’m thankful you care, but your remedies cause me more weariness than help.

Something else I’d like to say…for some reason you have this need to ask me if I’m feeling better every time you see me. As I’ve said before, MS is progressive so that question truly has no answer. Feeling better than what or when? Yesterday? Ten minutes ago? Last year? Instead of always asking me if I’m feeling better, treat me like everyone else. There are more things to talk about in life than my having MS. I don’t want that to be the center of conversation every time we meet. I am more than my MS. I am still me and would much rather talk about gardening, traveling, architecture or the funny thing I saw yesterday on the side of the road. Don’t ignore my struggle, but don’t make it a continual focus either.

Please know that I have my bad days and at times terrible, horrible really awful days. Getting out doesn’t make them better either. In actuality, going out has the potential of making them worse. Me doing more will not make my MS symptoms less. Yes, exercise is important, but it has to be done carefully. That old saying “no pain, no gain” will not work for me. If I get to the point of pain, I have pushed too far and my body is going to rebel for days, if not weeks. I have to do everything carefully and with great planning. Sometimes my bad days happen within minutes of a good moment. That’s just how rebellious my body can be. So please don’t tell me I need to get out more or I just need to lose weight to feel better. That’s not the cause of my struggle and it is not the answer to my pain.

So, the next time you decide you want to judge me for my bad days, bad moods or even my bad responses to your insensitivity, keep these things in mind…

I am the same person I was before my MS diagnosis. I am intelligent, caring, full of fun, loving, ready to laugh at any given moment, and a great friend. I also have the potential to be angry, moody, and frustrated. All still part of who I am. I would like nothing more than for MS to be cured, but as of today that reality doesn’t exist. Please don’t look at my disability as if that’s all that I am. I am still me…MS and all. The only difference is that I need a lot more love, support, care and understanding. I would much rather have someone fighting alongside me than against me.

Signed,
An MS Warrior
(Penelope Conway, Positive Living with MS)

P.S. Please share this with your friends, family, co-workers, and neighbors. Multiple Sclerosis awareness is needed all around the world.

The truth of a person living with Multiple Sclerosis

This is the truth…the raw truth of a person living with Multiple Sclerosis.

I can not go through life pretending…pretending that everything is okay, because the truth is, it’s not. Let’s get this out in the open instead of constantly whispering about it in the shadows. I am living with a chronic illness. You know it and I know it. It’s not by choice either. I didn’t pick Multiple Sclerosis out of a line up or grab it off the store shelf.

MS is not my fault. I didn’t cause it by the way I eat or the things I do. It’s not payback either for the things I’ve done in my past no matter how bad they may have been. MS picked me out of a crowded room and decided I was the one it wanted to live with. I had no choice in the matter.

The choices I do have are in what methods I decide to pursue in dealing with this illness. Those are my choices though, not yours. Just like this is my body and my life, I am the one making the choice in the way I will seek treatment. You have your own hardships and struggles to face. I’m sure you wouldn’t like me getting into your business and matter-of-factly pointing out everything you need to be doing regardless of if I even know what I’m talking about.  I’m not here to tell you how to live your life by giving you step by step solutions to all your troubles, so please stop judging me in how I live mine.

It hurts when people refuse to accept my diagnosis. MS is hard enough as it is, I don’t need finger pointing and constant “if you only” statements thrown around. Can we just be honest about everything? Can we face this together so I don’t have to face it alone?

I may be strong, but I’m not bulletproof. I keep going because MS has made me a stronger and better person, but that doesn’t mean I don’t hurt. The truth is I get scared, fail, struggle and even break. I don’t give up though. Nope…not me. I’m a fighter by choice and will keep fighting every day that I live. That’s the truth of my life. Will you stand with me in the fight?

MS Gets on My NervesMS WarriorMS Superhero