I have fallen and I can’t get up

I had this bright idea to scrub the floor yesterday and since I’m a bit OCD, I chose to get down on the floor and lug my body along with a bucket of vinegar water across the room to ensure that every nook and cranny was cleaned.

I didn’t crawl around on my hands and knees as I would have done years ago. For me that’s an impossibility. I am unable to kneel due to numb and weak body parts. I just pull myself around backwards on my butt. I’m sure I am not the only person who does that. Surprisingly I am pretty good at it too. I’m actually better at that than I am at walking.

When I finished, it came time to get up from the floor. Now that’s a big deal. I am definitely more qualified at get down on the floor than I am at get up. The thing is, even though I know this fact about how my body functions, I still disregard it and find myself in these crazy predicaments without a planned solution to help me out.

It took me over 30 minutes to make my way off the floor. I tried all my normal tricks to no avail. I’m sure if there was a camera focused on me at the time, I would have resembled a beached whale in need of life support. I simply had no strength to pull myself up.

As I sat on the floor in tears and feeling defeated, I came close to calling a friend and asking them to leave work to help me off the floor, but my stubborn determination won out.

I remembered a video I had watched a few years back on how to get up from the floor MacGyver style! I used the “book method” since I had a nearby bookcase loaded with books. You have to watch the video to know what I mean, but I slipped books under my butt to slowly raise myself up to a height where I could pull myself onto my chair.

It took a bit of work, but I made it. I did nothing the rest of the day, but felt proud of myself for the accomplishment. It’s funny to me the things that make me feel proud lately. Getting up from the floor may seem trivial to a majority of people, but for me it was monumental.

Don’t avoid asking for help. If someone had been home with me, I would have surely had them help me get up, but sometimes you are the only one around and you have no other choice. You have to push through and figure out a way to make things work.

Never let a moment of defeat cause you to give up. We may have to do things differently than a majority of the population, but with a bit of creativity, ingenuity and determination anything is possible.

Now today is nail clipping day. That’s another task that takes some ingenuity and creativity for me to complete. I wonder if there is a MacGyver option for that too.

MS Gets on My NervesMS WarriorMS Superhero

 

What A Multiple Sclerosis warrior looks like

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. Oh, my…they’d be running for the hills to hide away.

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, alone or hopeless. I don’t want anyone to give up.

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

We didn’t ask for this fight. I don’t know anyone who picked MS out of a lineup and said “I want that disease for the remainder of my life.” We didn’t cause it nor can we end it. The only thing we have left to do is to fight or give up, and giving up is not an option.

You see, MS warriors are made in the struggle. 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!

MS Gets on My NervesMS WarriorMS Superhero

 

“Oh, just get over it already”…really?

Have you ever expressed a concern or talked with someone about a new multiple sclerosis symptom you are experiencing and their response was “get over it”? I’ve always thought that to be a strange response. Get over what? Get over the pain? Get over the fear? Get over a chronic disease? What exactly am I to be getting over?

How do you get over something that you live with on a daily and minute to minute basis. It’s easy for someone to come along who isn’t living in your body and say “get over it” when they aren’t experiencing your challenges, but a person doesn’t just get over multiple sclerosis…they live with it.

I have no control over how my body will respond from day to day or even know what challenges I will be facing. One day I may feel great and the next day feel as if I’ve been hit by not just one, but two Mac trucks. I can’t control how my body is feeling and behaving even within the next hour, so how am I supposed to just “get over it”?

Unfortunately, there are people who are unequipped, ill-equipped and wrongly equipped to be helpful to a person living with a chronic illness. If I had a broken arm, I would have people pouring out their concern and desire to help me open doors and carry a pile of books, but that’s because a broken arm is temporary and the need is visible. Once the bone mends and the cast is removed, the need for help is no longer there. Life goes on as it always was and no one has to open doors or carry books for you any more.

NEWS FLASH: a chronic illness is ongoing. It doesn’t simply go away no matter how much someone wishes it would. That’s why it doesn’t make sense to expect someone who is going through pain, weakness or any other MS struggle to simply “get over it” as if it’s a decision that can be made.

“Oh, today I’m going to ignore the fact that my legs don’t work and have a tendency to twitch uncontrollably, get over it and walk across the room.” Really? And that’s suppose to make multiple sclerosis go away…ignoring it and just getting over it? Yeah…No, that doesn’t work. Our decision is in working through it, not getting over it. We need help through the pain, through the struggle, through the difficulties.

Most of the time people who give that kind of advice, if you want to call it advice, are at a point of frustration within themselves because they are being inconvenienced. They actually say what they say because in reality they want you to be over it so they can be spared having to deal with your challenges. Most people want to help others out, but they want you to feel better thus sparing them the inconvenience of having to adjust their own lives to accommodate the unexpected. They are thinking of themselves.

Don’t ever apologize because you are hurting or needing help. Don’t allow someone’s response to you cause feelings of guilt just because you are having a challenging day. You are the one living with MS and you have the right to feel what you feel. Most people with MS hide their struggles for that very reason. They don’t want to be thought of as a burden because they know their pain is ongoing and their struggle is a daily occurrence.

But I want you to know that you are not a burden, you HAVE a burden which by definition is something too heavy to carry alone. Don’t be afraid to ask for help. The ones who are meant to stick around will ask how they can help lift that burden. Let the others go.

MS Gets on My NervesMS WarriorMS Superhero

 

Another year with multiple sclerosis is over and a new one has begun

It’s hard to believe, but a new year is here. We have all come through some crazy moments last year and made it through stumbling into another year. Maybe things didn’t go as you wanted, but you made it. Now, that’s something to celebrate along with all the fireworks, champaign bottles and shouts of Happy New Year.

Some people have asked me if I have a resolution for the new year and the only answer I have is that I plan to be a better person than the person I was yesterday. That’s my plan for every day. I make many mistakes along the way in life. Some hurt me, some hurt others, and some have no consequences other than the fact that things could have been handled better.

There are some things I have learned about life along the way…

People will disappoint you, forgive them anyway.
People can be insensitive, don’t be insensitive in return.
People may never understand your pain, don’t hold it against them.
People will hurt you without even realizing it, don’t hurt them back.
People will be people, love them anyway.
People might assume wrongly about who you are or what you need, don’t assume wrongly about them.
Why? Because people just might surprise you and bring a ray of sunshine into the darkest corners of your life.
You just never know and you might do the same for someone else.

I know that’s not exciting news. It’s not filled with wonderment and awe, but it’s necessary to think about.

We all need hope for a new year. I hope this year will be filled with hope for you. Hope for less multiple sclerosis progression, hope for less pain filled nights and less stress filled days, hope for financial support, and hope that you get the help you need no matter how small it may seem to others. I would say hope for a cure but that’s a given for all of us living with this dreadful disease.

That supposed “cure” you tried last year may have disappointed you, those supplements you took may not have helped as planned, those exercises and diets you started may have been less helpful than expected, but there are always reasons to hope for new things going forward.

Don’t give up on the possibilities of great things happening this year. Anything is possible…anything!!

So I wish you a Happy New Year and a year of greatness, less progression and hope!

MS Gets on My NervesMS WarriorMS Superhero

 

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 enough 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 the winter months, 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 this time of year. 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, 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. That’s not me being lazy. That’s me making better use of my time and still being able to enjoy what I’m doing.

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

MS Gets on My NervesMS WarriorMS Superhero

 

Smile even when you’re hurting

It’s Christmas morning. I woke up and my first thought was of you. It wasn’t about multiple sclerosis and all the crazy things going on in my life because of it, it wasn’t about family that will be coming over later in the day, it wasn’t about the news and all that’s happening around the world right now, it wasn’t even about the fact that I really need some creamer from the store to get me through the rest of the week.

No, it was about you and hoping that today is a good day for you. Hoping that no matter what is going on, who you see of don’t see, what gifts you get of don’t get, what symptoms rear their ugly head to try and deter you from enjoying the day, that you see just how amazing you really are. Because I happen to think you are.

It’s amazing how even on our worst days we can still start our day off with a smile…by choice. And I hope I am able to be the source of your smile today. I hope that smiles far out way tears today and that you give yourself a break from all the chaos happening around you to enjoy the good moments scattered in the mix.

I know it’s not easy to smile when you’re hurting but today is a new day…and you look so much better when you smile. You can’t give up. You just can’t. Smile!

Merry Christmas to you and yours…

MS Gets on My NervesMS WarriorMS Superhero

 

You are not multiple sclerosis

Do you ever feel like a failure? I know I sure do and did even  more so when my career ended because of multiple sclerosis, but I’m here to tell you that you are not a failure and that those thoughts are simply not true. Most people who experience their career being stripped away unexpectedly due to a chronic illness start to feel as if they are less of a person. It’s bad enough having to deal with a new life of unexpected struggles, but add to that no longer being able to do the thing we love and have been doing for years…well, it feels like a sock in the gut.

We assume that we are no longer useful or productive because we are no longer doing something of value. Society has taught us to think that way. But who you are as a person is not defined by what you do and definitely not by a diagnosis of MS. 

What you do is only one part of who you are, it’s not the full picture. Not even close. Deep down in the very depths of YOU is an identity. That’s where your values, passions, motives and ethics live. That’s where the true you comes to life. Your character is born there and grows. It speaks volumes of the person you are.

If someone were to describe you, they may share some physical traits like the fact that you have freckles or brown hair but when it comes down to it, they will share your heart and tell others of your character. How you selflessly give or rudely approach others. How you care for the unlovely or complain about everything that happens to you in life. How you smile even when life is tough or point fingers at others misfortunes to make yourself feel better. How you love or how you hate.

If your job, your career, was stripped away from you…your character is what lives on. You can always change your profession, but you are pretty much stuck with being you. That’s why it’s so important to know who you are, to understand your passions and to develop your character. That takes work and that’s where we should focus our attention. Life really is what you make it and that’s not always an easy thing to grasp or even to do.

We go to school for years to develop a career, but it seems we should be spending more time learning about ourselves. You are not a title or a job any more than you are a disability or MS. Right now, it’s time to introduce yourself to you. Get to know who you are all over again. Begin developing your character and adjusting the not-so-pleasant things you discover there.

I know this won’t be a popular post, but now is the time to actually become the real you. Don’t let MS be your identity. You are so much more than MS and oh, so much more than a career. As Maya Angelou once said, “I’ve learned that making a ‘living’ is not the same thing as making a ‘life’.

Make your life better, sweeter and more meaningful in spite of MS or a lost career. I believe in you!

MS Gets on My NervesMS WarriorMS Superhero

 

When Multiple Sclerosis messes with your taste buds

Just when I think multiple sclerosis can’t get any weirder, I’m proven wrong. The past few days my ability to taste has diminished considerably. My morning coffee has become more of a habit drink than a savory experience. It tastes like warm something…I just don’t know what that something is.

I made some lemon chicken yesterday for dinner but couldn’t enjoy it. It had a wonderful aroma, looked amazing, but the taste just wasn’t there. In the end I didn’t eat much of it. That’s concerning because ensuring proper nutrition is very important to anyone dealing with MS, or any other chronic illness, and I’m having to get a bit creative to ensure I do.

I have some meal replacement drinks that are chock-full of minerals and vitamins, and I find they are currently easier to manage than an entire meal that I can’t enjoy. I will have to keep a bit more track of the foods I eat, or don’t eat, so I don’t end up losing weight unnecessarily…although who wouldn’t want help losing a few extra pounds? 

Today I am going to make some tomato soup for lunch and maybe try a salad but that may be pushing it. We’ll see.

I’m ready for my taste buds to return to normal, I just wish my life would as well. That may be too much wishing for one day. I pray, work hard to stay healthy and keep a daily schedule of exercise, muscle massage and brain therapy.  If I see a shooting star tonight I will definitely give it a wish. Hey, anything is worth a try. 

Today belongs to you…not Multiple Sclerosis

I know life gets hard. Sometimes it seems downright horrible with multiple sclerosis tagging along. The unknown of each new day can truly be daunting, but you are going to make it. Today is a brand new day ready for a brand new YOU. Take a deep breath, shake yourself off and be prepared for an amazing day. You are the one that gets to make it amazing. You and only you.

Don’t underestimate the power of a positively focused attitude, but give yourself a break and allow your feelings to be felt. That’s why they are called feelings…because you FEEL them.

Take the time to be overwhelmed, grieve, cry, and even pout if you need to. I always cry best in the shower where I know I can be alone and where it’s easier to blow my nose. Crazy, right?  There’s something about the water that seems to make it all better in the end. So cry if you must, but once you have dried up all the leaks, get yourself dressed and ready for greatness.

Shake your fist at MS if you have to, giving it a big “telling off” to clear the air and to let it know that you mean business. I actually gave it a right jab for knocking me over as I was getting out of bed this morning. It didn’t hurt MS one teeny tiny bit, but it sure made  me feel better.

One day I would love to be able to say I used to have MS. That MS is no more. Sadly that day isn’t today. But do you know what today is? Today is a day full of countless possibilities, conquerable moments, untold victories, and strength even when you feel as if you are at your weakest and about to fall apart.

You can feel bad and still be great and even do great things. You got this. You really do. Today is conquerable…now get out there and conquer.

Happy moments

Is there happiness with multiple sclerosis?

Time seems to be passing by so fast. The days and years are flying by. I mean, it was only yesterday I was traveling and taking in the sights and sounds of life all around the world…now I do all my traveling from my bed to the couch. It’s still an adventure though. One filled with its own mystery and wonderment.

With the passing of time, I find that it’s easy to forget the good things that happen to us in our everyday life. We seem to have no trouble remembering the tears. Those things get stored in our memory banks and we can pull them out without a problem. But the good? Those seemingly simple happy moments, we tend to forget.

Living with multiple sclerosis, we have enough bad happening in our lives to fill buckets and buckets of sad memories. Because of that, it’s important to take time to remember the happy moments that cause us to smile. That’s why I decided a few years ago to start a HAPPINESS JAR. It’s really a simple thing. So simple in fact that it almost seems absurd.

Every day before I go to bed, I grab a scrap of paper (it doesn’t have to be anything special…the flap of an envelope, the corner of an electric bill, or even part of an old shopping list) and write down the happiest moment that took place that day. I put the date on it, fold it up and place it in my jar. That’s it. Simple, right? Even with my sketchy handwriting it is doable for me.

It only takes thirty seconds for me to jot down a happy moment; a smile that I might need in the days ahead. By writing them down, I am recording precious gems and treasures that would have normally been forgotten. Those memories will bring me comfort when life gets hard and hits me like a ton of bricks. On those days, I pull out my happiness jar and open the memories. In a few weeks I will be dumping out this years moments of happiness and putting them in a book that I can flip through. I have two books like that already and you’d be amazed at the smiles they bring.

My happy moments are pretty simple too. They are hardly earth shattering. With all the pain and trouble MS brings and the struggle it takes to simply get through my day, it’s the quiet and simple moments that bring me comfort. It’s things like watching a bird dancing out on the lawn, playing peek-a-boo with a shy child in the grocery store, hearing the silly laughter of your best friend, getting a hug, enjoying a moment alone in the quiet of the day, and even having a quirky dream. So many things.

Just yesterday I wrote down that even though I spilled my coffee and wore myself out by trying to do too much, I spent the day on the phone with a dear friend and enjoyed the conversation and laughter. Of all the things we talked about, it was the laughter that brought me the most joy. Now that memory is recorded on a little slip of paper in my happiness jar. At some point in the future, I will pull it out and remember the laughs and smile all over again.

That’s what a happiness jar is all about…to bring happiness. And who doesn’t need a little happiness in their life? We all have something in our day that we could write down. If you can’t find anything at first, just look a little deeper. It’s there.

Maybe you have an old mayonnaise or pickle jar laying around. Why not make your own happiness jar this week? You won’t regret it.