I woke up exhausted and moving slow

Is it time for bed yet? That was my first thought as I woke up this morning. I glanced at the clock and it was proudly displaying 6:30 AM. That’s way too far away from the sun going down and me climbing back into bed. I yawned, tried to stretch and yawned some more but only seconds passed. Now the clock says it’s 6:31 AM. At least it’s one minute closer. Maybe I can just lie here another 720 minutes.

Some days I wake up already knowing how my body is going to behave, and I can already tell that mine is going to be moving slow…turtle slow. I have yet to wake up feeling refreshed and chipper, even after my morning cup of coffee. As a matter of fact, I haven’t felt rested in years. I’m not even sure what that feels like anymore.

I used to hate the kind of people who wake up immediately bouncing around with gusto as soon as they open their eyes. Right about now I wish I had a teeny tiny bit of their morning pep and bounce.

So, how do you function when your body won’t function? How do you pull together enough energy to get up and get yourself dressed? What do you do when you have to drag your body through the day as it rebels at any and every form of movement? How do you win the fight with your own body?

People don’t quite understand that kind of MS dilemma and how difficult those questions are to answer. They see our bodies and think that nothing is wrong with us. If only they could take a look at the damage hidden beneath our skin and tucked away in our Central Nervous System. It would tell a completely different story because that’s where the chaos lives.

When your legs are having trouble placing one foot in front of the other to take you where you need to go or your hands contain zero strength as everything you hold comes crashing to the floor, don’t let your inability to do something keep you from living your day.

There’s more to living than walking or holding onto things. Sure MS gets in the way of just about everything we do, but don’t let it steal the one thing that will help you through your day…hope.

Hope for a better today than you had yesterday. Hope for more strength when you are at your weakest. Hope for a day of less pain and smaller struggles. Hope for the tears to be dried up and smiles to take their place. Hope for real, genuine friends to become a part of your journey. Hope for hope!

Be kind to yourself today. Don’t push too hard, too fast. Know your limits and say “no” to people demanding more. No is not a dirty word. It’s a word that will save you from many stressful and unnecessary situations. You are in charge of your day. You are the boss, the head honcho, the big cheese of your body. You get to set the pace, no matter how slow it may seem to others.

Remember, being slow isn’t a bad thing. Don’t forget about the tortoise and the hare. Both set off to win a race which the hare should have had no problems in winning, but the tortoise crossed the finish line first. Be the tortoise today. Use your smarts over your bodies abilities and cross the finish line at the end of the day a winner.

chaos

Living with Multiple Sclerosis without losing your mind

My emotions have this tendency to run wild. I find myself crying for no reason, laughing at ridiculous things and getting mad at nothing…absolutely nothing. My brain has mixed things up and doesn’t seem to know the difference between a laugh and a tear.

I wish I could say it was just me being me and life being life, but multiple sclerosis is at fault. Somewhere, deep in my brain, the area that controls my emotions has been damaged. The communication of my feelings and the need to express them is a complete mangled mess.

Life changes a lot with MS. It changes in ways we expect and also in ways we never knew possible. Sometimes those changes happen all at once and other times they simply pile up, little by little, until we find ourselves surrounded by a sea of change.

That’s me at the moment…overwhelmed in a torrential storm. It feels like my world has been knocked off its axis and is bouncing around inside some perpetual game of universe pong. I just want things to slow down a bit. It doesn’t have to stop entirely, I just need the brakes put on and for things to stop spinning out of control for awhile.

I’m sure you understand the feeling all to well yourself. Today you may be facing a boatload of MS changes, financial struggles, relationship problems, emotional chaos, or a little of them all wrapped up into one. That’s a lot for anyone to have to face.

I hope you know you aren’t alone in this journey. I may not understand your exact struggles, but I understand what it feels like to ache so deep inside that you can’t put the pain into words; to dread a new day because you just aren’t sure what the day is going to bring; to wake up in the morning wishing you could just go back to bed and wake up from the nightmare you find yourself in; to watch your dreams get crushed and feel as if you will never be able to dream again.

I mean it when I say I’m standing with you. You can vent, you can cry, you can spill out every emotion that’s been bottled up inside and I won’t judge you nor look at you with that weird blank stare so many of us see on others faces when we try to explain what’s happening inside.

Yes, you may be living with multiple sclerosis, you may have a crazy mixed-up life, your emotions may go bonkers on you, your days may be spinning out of control, but regardless of how things look today, there is always hope for a better tomorrow.

Life is tough. Anyone who says otherwise isn’t really living. But even though we face some awful things in life, there are great things happening that show up and bring relief to the pain. And wouldn’t you know it, they happen at the very moment you feel as if you’re about to fall apart.

Things like a “thinking of you” card in the mail from a dear friend, a fistful of weeds and smiles from a child, your favorite song playing on the radio at just the right moment, a piece of chocolate, ten minutes of silence, coffee with a friend…they are happening all around you, you just have to pause for a moment to notice them.

Today may be a tough day but don’t let the struggle cloud those sweet moments that are happening in your life. Pause and breathe. Find something to be thankful for. Look around. There is some good in the chaos happening around you. You are going to make it through this storm. Hang in there and let those sweet pauses give you strength to get through the rest of your day.

forget

Sorry…I forgot

My ability to forget things is a skill. It takes great talent to forget birthdays, lunch plans, appointments, shopping lists, things people said only a few minutes earlier, and words that I know I know but can’t seem to find even on the tip of my tongue. And that all happens in one day. Each day is different, yet the same. I’ve become a pro at forgetfulness.

And just so you know, it’s different than old age forgetfulness or the casual “sorry, I forgot” kind of thing. My memory issues live in a universe and dimension all their own. A place where my thoughts and words float about just out of reach. I try to reach for them, but those darn words move about too much. Sometimes they hide from me and other times they simply slip through my fingers.

I try. Really, I do. If I didn’t have Post-it notes, a calendar, pen and paper, and my handy-dandy mobile phone with alarms and reminders, people wouldn’t see me for days. I’d be lost somewhere between space and time wondering where I was and how to get back home…or even where home is.

So what causes it? Take a look at my brain and it would be obvious. The damage in there looks a bit like swiss cheese. Those holes and lesions in my brain are the reason for my forgetfulness. Black holes don’t just exist in outer space you know. Some live right here…inside my brain. Talk about things getting lost in the dark. I live there.

I’m grateful for the people who patiently wait for me to get my words out into complete sentences, who remind me of the plans I’ve made, and who help me, without judgment, when I can’t remember the directions to a store I’ve been to a million-trillion times. I appreciate today’s technology for helping me keep my day in order. I’m thankful, that because of my MS cognitive problems, I get to watch a movie or show on TV that I’ve already seen as if it’s my first time viewing it and get to be surprised all over again that the butler did it.

My brain may not be able to function properly every minute of the day, but at least I know I have one. I even have documented proof. Just check out my MRI’s if there’s ever any doubts. As for some people, I think they lost their’s entirely a long time ago.

Sometimes living with Multiple Sclerosis can be embarrassing

Few things are as embarrassing to me as the times I’ve been out and about then had to rush home because of a bathroom accident. I’m not talking about a little wetness which can be easily remedied by carrying around a change of clothes. I’ve done that more times than I care to admit. I’m talking about a full on stink fest. Something that requires lots of wipes, nose plugs and a shower.

Yesterday was that day for me.

I’m normally pretty good at judging when I need to go to the bathroom but some days my judgment is all wrong. The muscles that control my bladder and bowels no longer work properly, that’s why a few years ago I had a urinary catheter surgically inserted into my belly to avoid such moments. It has definitely been a life saver for me.

Now don’t get me wrong, it is a lot of work maintaining a urine bag. Once a month a nurse has to change out the catheter and I still have to be extra cautious of urinary infections, but at least I no longer have puddles on my floor because I couldn’t get to the bathroom in time. The only puddles I have now are the few times I’ve positioned the tube in such a way that it kinked thus stopping the flow to the bag or when I forgot to empty the bag and it could no longer hold anything more.

I change out the urine bag each night for a larger one that I hang on the side of my bed and then use a smaller leg bag throughout the day. I rinse the bags with water every day and put some vinegar in them when they are not in use to keep them from smelling. I have a kind of love-hate relationship with my catheter.

Thankfully, I don’t make a mess often (maybe once or twice a year), but it is still super embarrassing when it happens.

I hate not being in control. Maybe that’s why I have such a hard time with multiple sclerosis. Control of just about everything has been taken from me. But you know, one thing I do have control over is my reaction to everything that happens.

I get to choose if I cry, get angry, laugh it off or give up. I am the choice maker of my reactions to everything that happens. Yesterday I chose to have a mini pity party, cry a little, then laugh. Everything worked out in the end. Maybe not the way I wanted them to, but all is well in my corner of the woods.

No matter what is going on in your life, no matter how bad or good, no matter the circumstance, remember that you get to choose your reaction to what’s happening. Multiple sclerosis may have taken a lot of things from you, but you are still in charge of you. That’s something I have to constantly remind myself of every single day.

When you have to think to swallow…

One of the scarier moments for me in this life with multiple sclerosis is when my throat closes up and refused to allow me to swallow. Many times I have to actually convince those muscles to actually function. Last night was one of those times.

I had water by my bedside, elevated the head of my hospital bed, reached over for my cup then took a sip. I held that water in my mouth a good two or three minutes as I tried to swallow. At one point I even thought about spitting it out but eventually was able to get it down. The harder times is when it goes down the wrong way and I end up having a coughing fit.

And people wonder why we are always so exhausted. Maybe it’s because we have to work overtime all day long in order to do the things everyone else takes for granted. When you have to think to walk, think to swallow, think to remember words, think to even scratch your nose…well, that’s a lot of exhaustive thinking and would wear out even the healthiest person around.

I wish there was a switch I could flip to make my muscles work as they were intended or a program I could write to override the glitches in my system. That would make my days so much easier to manage and would be a welcomed improvement.

My morning coffee is not as enjoyable as it used to be but I still make myself a cup each morning anyway. Sometimes I don’t get it all down and end up pouring half of it down the drain…but sometimes I don’t. This morning I finished my cup and for that I’m thankful. It’s the little things in life that really matter anyway.

Life has drastically changed because of multiple sclerosis but I will never give up looking for rainbows in the chaos. This morning I found a rainbow in my coffee cup, tomorrow maybe I will find it in the laundry. Hey, anything’s possible!

Haven’t you heard…Multiple Sclerosis has been cured!

We live in a society filled with opinions. Opinions about what a person should wear, what they should eat, where they should live and what kind of work they should do. It seems everyone is an expert at everything. You can’t do or say anything today without someone voicing an opinion. (Keep in mind, this post is just my opinion.)

If we spend our time listening to all those voices, we would go mad…absolutely mad. I know people mean well, but the judgmental, know-it-all attitudes have got to go. When I was a healthy person, I would get a lot of opinions thrown at me about how to live, but now that Multiple Sclerosis has taken up residence in my body, I’m bombarded with even more opinions. Someone once said, “It’s funny how people have strong opinions on things they know nothing about” and that is so true.

There are opinions about what I should eat and what I shouldn’t eat, what meds to take and that I shouldn’t take, what exercises to do and how often, what prayers to pray, and what supplements to take. I’ve heard how everything from bee sting therapy to removal of dental fillings will cure me…after all, it was said on the internet. If only I would rub Calamine lotion all over my body while standing on one leg and singing I’m a Little Teapot at the top of my lungs…I’d be cured. Why am I not doing it? I must not really want to get better.

Have you ever wanted to just smack someone like that upside the head? They mean well, but come on. Do we still think as a society that the internet is a valid, 100% reliable source of information? It’s basically all opinion. You can find any source you want to back up your idea if you look hard enough. If you choose to believe than unicorns and leprechauns are living in your backyard and want to prove your point, I’m sure you could find a website out there that would validate it for you.

Living with Multiple Sclerosis is not easy and we all want a cure to be found, but we don’t need to be criticized or judged by others for how we choose to deal with this disease all because of something you can read online. There are different types of MS, differences in the people living with it and different progressions that can happen. That’s a lot of differences to try and cram into one fix-all solution.

How about this? Do your best to shut out all the opinions flying around you and choose to simply enjoy life. That way you can cut out the stress that comes with all those opinions and can use your time instead to create amazing memories with the people you love. After all, that’s what really matters anyway.

To whom it may concern: Advice to the world 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.

Multiple Sclerosis and cold weather

Cold weather is not my friend. My muscles and joints choose to stop working the colder it gets thus making moving any body part especially difficult. If you were to ever see a snowman walking (or is it snowperson? I never get those things right.), I think I would be what that looks like. I can totally understand why bears choose to hibernate in the winter. I need to take a long vacation to the Caribbean right about now…or find a way to sleep until summer gets here. I’m open to options.

Between my hands having trouble holding onto things and my muscles freezing up, I’m a bit of a sight during the cold weather months. Every part of me seems to get weaker as the cold settles in. Yes, I also have trouble with hot temperatures. I need to find some place with even temperatures all year long. I’m definitely not looking forward to having snow. Have you ever tried maneuvering a wheelchair through a foot of snow? Talk about stressful.

Thankfully I’ve moved further south and snow is not as much of an issue for me any more. Just the act of putting on warm layers of clothing is difficult for me. I fall over putting on socks so I’m sure you can imagine the difficulties I have with long-johns, sweaters and gloves.

Because so many people with multiple sclerosis choose to remain indoors during winter, it’s a time when depression has a tendency to creep in. Parties are in the making, gatherings are happening and get togethers are more frequent among friends because of the upcoming holiday’s. For me, I give a lot of “maybe” replies to any invitation I get and those maybe’s turn into canceled plans more often than not.

Sadly, those invitations are becoming less frequent as the years go by. I think people just assume I won’t be able to come so they don’t even bother to ask anymore. Talk about painful. I’d rather be invited and given the choice as to whether or not I can attend then to not be invited at all.

Although this time of year can be difficult, don’t let depression walk in the front door…or sneaky in through the back door for that matter. I know that’s easier said than done, but try to keep the gloomies out. Find something you enjoy doing and stock up on all the supplies needed to keep you going for awhile whether that’s knitting, drawing, coloring, jigsaw puzzle building or movie watching.

I have a box filled with thing to keep me busy. In mine there are coloring books, 3D puzzles, building blocks and even a set of legos. Lately though, I’m finding it easier to use some of the apps on my tablet than the real items. I can just point and tap to fill coloring pages with my finger instead of trying to hold onto colored pencils and stay within the lines, and I can complete puzzles by tapping and dragging the pieces in place.

Get creative and make your own fun. The warmer weather will be back before you know it.

Ever feel like Eeyore?

“It’s snowing still,” said Eeyore gloomily.
“So it is.”
“And freezing.”
“Is it?”
“Yes,” said Eeyore. “However,” he said, brightening up a little, “we haven’t had an earthquake lately.”

I hate to say it, but Eeyore is right. That gloomy, grey stuffed donkey that lives in the southeast corner of the Hundred Acre Wood is right. His thoughts may be deep and most of the time rather gloomy, but even he at times can find the positive in a sad kind of day. Are you surprise? I bet you didn’t think that was even possible for him to do.

I know many Eeyore’s…people who seem sad all the time and tend to focus of the bad in everything happening around them. People who sit in their gloomy place finding mistake after mistake rather than looking outside to see that the wind is capable of blowing those dreary bits of life away.

Today it may be gloomy, rainy and muddy in your neck of the woods—multiple sclerosis has a way of doing that to a person’s life—but regardless of the cloudy and stormy outlook, there is still the possibility of rainbows and sunshine. It may be found in the kindness of someone you meet, a joke you read online, or a distant memory of precious moments with friends.

Regardless of what you are facing, I hope you know that you don’t have to go through this crazy journey alone. That’s one great thing about the internet…there are people all around the world who get it, who understand the struggle and are only a keystroke away. I’m here with you along with that person over there, and that one over there, and this one right here.

If your balloon should pop, if your house should cave in, if your tail should fall off, you have a group of friends who love you. You are not alone, I can guarantee you that. Allow yourself the time you need to grieve, cry, feel. Then once you have waded through the storm, look up for a break in the clouds.

Don’t let the gloomy circumstances in front of you keep you from seeing the possibility of something great happening in your life. Sure, it’s easy to point out all the things that are bad or worry about the countless things that could go wrong like Eeyore would do, but just this once decide to find something you can be thankful for even in the gloomy parts. If Eeyore can do it (although sparingly), then I know you can too!

“The nicest thing about the rain is that it always stops. Eventually.” – Eeyore

Don’t quit…not now, not ever

Have you ever felt like your whole life was falling apart before your very eyes and no matter how hard you tried you couldn’t do anything to stop it? That the very ones you thought would stand beside you forever turned and walked away? That in each passing day a wave of hopelessness flooded your heart and clouded your mind, inching you closer and closer to simply giving up? That just the thought of facing one more day filled your heart with tremendous pain, fear and too much uncertainty to manage?

If you have ever felt this way before, just know that you are not alone. I have been there too.

People who know me, know that I’m not a quitter…I never have been. I face everything with the confidence that I will overcome. But there have been times when I’ve felt like giving up and waving the white flag of defeat. I’m not immune to having the feelings of being overwhelmed, weak and uncertain.

I read a story once about Emperor Tamerlane who was badly defeated in battle. He ran from the battle and  hid himself away in a barn. Enemy troops searched the countryside for him. By this time he was depressed, his troops had been terribly defeated and scattered, and he didn’t know what he was going to do.

It was then that he noticed an ant trying to push a giant kernel of corn up over a stone wall. As he watched this ant attempt to do the impossible, he counted its futile efforts to see how many times the ant would try until it gave up.

One, two, three… twenty… forty… sixty-nine times the ant tried and failed to push the kernel over the wall. But in one last push, on the seventieth try, the ant made it. Leaping to his feet, Tamerlane excitedly said to the ant, “If you can do it, then so can I.” That day he changed his outlook, reorganized his forces, went back and defeated the enemy.

I wish more people understood that every day living with multiple sclerosis I am attempting the impossible, and just like that ant I fail more than once…but I don’t quit. I push, get exhausted, try again, fail, rest, but still get up and try some more. My entire life seems to be one giant push. I push through pain, weakness, dizziness, blurred vision, muscle spasms, and lack of sleep. I push and keep on pushing at everything I do. Nothing comes easy, not even something as simple as a trip to the mailbox.

Sometimes each one of us needs a little ant to remind us that we can do it. That this fight is worth it. That we can make it. Today, let me be that ant.

Don’t quit. Don’t let the fact that MS is a part of your life cause you to feel defeated. You can’t stop trying. You can’t stop pushing that kernel of corn. Don’t let MS win. You got this…now PUSH!