An MS life isn’t so simple

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Most people don’t have to think about the things they are doing in life like answering the door when an unexpected visitor arrives until something like multiple sclerosis comes along and messes with our ability to do those things. Sure, we have to juggle things around in order to fit the sudden changes into our day and most of the time those shifts are not so simple to make. It’s that way with just about everything I do.

I’ve never been a big fan of running errands. Who would have thought the mundane chores of grocery shopping, going to the bank or the post office, and even picking up lunch could be so daunting. For me, in order to run errands, the timing has to be planned perfectly to ensure I have the energy for the remainder of my day. Not planning can end in disaster…meaning, can end in me vegging on the couch for hours just to regain enough strength to help me cope with the rest of my day. Some errands can set me back days…not just hours.

I have to think about doing things more than people should. For example, take the act of walking. That may seem like a strange thing to have to think about, but when I stand up to try and walk, I have to make sure I have the proper supports around me to keep from falling down. Then I have to concentrate on each step, movement, leg shift and foot lift. It takes GREAT effort and tremendous thought to do something as simple as walking and sometimes I don’t have the strength to do it. My muscles turn to jelly and won’t allow it.

If I need something in the kitchen, I can’t just jump up and get it. If I drop something on the floor, many times that item will remain where it landed until I have the strength to reach down and pick it up. By the way, that can mean it will remain on the floor for days. If someone comes to the front door, it takes so much energy to transfer to my wheelchair and make my way to the door only to find out it’s a solicitor wanting me to try their restaurant take-out service, that’s why most of the time I just don’t answer it.

When MS comes into our lives, the things most people take for granted become something we are grateful to still be able to do. We know that one day everything will change, the unexpected will happen, life will shift and simple will no longer be simple. No amount of planning prepares someone mentally for those kinds of changes.

If you find yourself frustrated because you need to fill up your gas tank on your way to work today or because you need to pick up some cheese for tomorrow’s spaghetti dinner, stop and remind yourself that you are still able to do those things…and be grateful for the little things no matter the inconvenience.

Don’t take anything you are still able to do for granted. Those things may take extra time to work through or you may have to get creative in the way you do them, but you will have accomplished something greater than great when you do complete it. You will have done something some people are no longer able to do.

Don’t give up, don’t give in and keep going while you can. That’s what makes you an MS Warrior. Plan B, C, D, and sometimes even Z, ZZ, and ZZZ have become a part of my everyday life and I’m okay with that. I will keep trying, keep going, and shift with the changes until I no longer can.

What do you do when your body gives out?

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Yesterday I crawled into bed around noon because my body had just given out. I was already done for the day. It’s sad because I didn’t get to do the things I had hoped I would do like dinner with a friend. It will have to be for another day. Thankfully she is understanding and doesn’t get upset when that happens. I do, but she doesn’t. Now, that’s a good friend.

I stayed in bed til just now… 6:00 AM. I made my coffee as usually, just a fresh cup not one made from old grounds that I forgot to empty. Yuck. Yes, I’ve done that before. So my day is starting off really good.

I have been given something really amazing today. What, you may ask? LIFE. Respect yourself enough to do something grand with life. It doesn’t have to be something others would say is spectacular, but something you know is amazing for you to do. So if you get dressed in something fresh and clean even if it’s only sweats and a t-shirt, then do it. Get up and get dressed.

It’s supposed to rain here today so I’m going to enjoy the day listening to the drops and working to clean up the desk in my bedroom. That’s not anything amazing to get done but for me it will be a miracle if it happens. I’ve been trying to finish it all year.

Respect yourself enough to know your limits and be ok with it. You can push them a little bit when needed, but be careful because like me if you push too hard, you will regret it. I don’t want to be out for another day or more like yesterday.

Act like you’re worth something, because you are. You are an amazingly beautiful and accomplished individual full of wisdom and fighting spirit to overcome the chaos you are in the middle of in life whether it be multiple sclerosis related or just life itself is hitting you hard. You have it within you to accomplish it. To rise above the mess and shine.

Don’t beat yourself up because things aren’t going as you hoped they would, but be thankful for another day to work on it. And know this… you’re not lazy when you have to breathe and rest. That takes strength and courage. Yes, I said that and it does.

Remember that today is a present wrapped up just for you… that’s why it’s called the present. It’s not yesterday or tomorrow. It’s the present and as a present it’s waiting to be opened and used. So achieve something today. Little or big… it doesn’t matter, just achieve something. Stand taller and shine brighter in these challenging days. It is an expression of the heart. You’ve got the strength needed to get through these times. I believe in you.

What are you going to do with your present?

Life won’t be easy with MS but it’s worth it

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When you get diagnosed with multiple sclerosis it seems like the world has come to an ended. For me it was something I knew nothing about. I had gone to the hospital because I couldn’t feel a good portion of my face, my vision was blurred and my right leg was going numb. I had an MRI and a spot was found on my brain that concerned the neurologist but he couldn’t determine what it was. He said I needed to be checked out in a few months to find out if I had a tumor or what was happening.

At that time I was in the middle of moving to Florida so I was hoping it was something that would just go away and my move would be uneventful. When I got to Florida it was 3 days later and I had lost vision in my left eye, was in a constant state of vertigo, the numbness of my right left was significant and had migrated to my right arm, was in the beginning stages of an MS hug and my world was coming to an end for sure.

I called a neurologist as soon as I arrived in Florida and amazingly they had an opening for me to come in. A second set of MRIs were done along with a spinal tap and a few days later the neurologist had the results. He sat down with me and said, the MRI shows over 6 spots in the brain and over 10 in the spine. I’m sorry to tell you but, you have multiple sclerosis.

I wasn’t given any information from the neurologist about what MS is, what can be done about it, NOTHING other than he said to me, “You will probably have a benign case.” What? Then he said, we will start you on Rebif and see how things go as we try to slow the progression down. That was that.

I was left on my own to figure things out and because I went to the doctor by myself I didn’t know what to ask or what to do. It was such a horrible feeling to do everything by myself. I left in a whirlwind and numb to the core.

Afterwards I dedicated myself to digging for answers and empowered myself through asking tons of questions even the hard hitting questions. After going to support groups and leaving feeling worse than when I arrived, I decided to reach out to others online with encouragement and my own odd sense of sarcastic humor rather than doctor speak and AA meeting type get togethers. I figured if I’m feeling lost and out of place then others may be too and we all just need to know that we aren’t alone. That was 10 years ago and although MS was well known, it wasn’t known enough by the public or even the doctors that are helping people with MS to cope.

It’s true that life won’t be easy afterwards. I prayed a lot and cried a lot but I made it through with a strength I never knew I had. Isn’t that weird how that happens? You don’t know you have something until you need it… and then, there it is.

You can get through anything life throws at you. I know you can. When everything crumbles down it give you a chance to build something spectacular out of the ashes. I guess the whole world is made up of things coming together and things falling apart. You never know what you may have. You may have beauty in the midst of your ashes.

Don’t lock yourself up distancing yourself from others. It seems like that would be the easy way to do things… to just shut yourself up and pull away. That’s our natural defense mechanism as humans. We build walls to protect our heart, but in the end, we find that the very walls we build are actually keeping away the people we need most.

Take a sledge hammer to that wall, start chiseling away at the concrete even if it will only remove one brick. Keep chiseling one brick at a time. That’s progress in the making.

Reach outside of yourself and do something for others. I find that when I am helping someone else in need, I forget about my own needs. It almost makes my struggle seem not so big. So, my challenge to you is to step out and touch someone. Do something to give back to others. Find a place where you can volunteer – a cause or an organization you believe in – and give all that you can of yourself, your talents, your time.

Sometimes we just need to step out of our own pain to realize that everyone has pain, and some are struggling even more than you are. A change in perspective can be the very thing that begins crumbling the walls and opening your life for a new found hope for tomorrow.

Me, MS, or why I can’t just get over it

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Multiple sclerosis depression… it’s a real thing and it happens. Not even the happiest, peppiest, most positive person in the world is exempt from it’s effects. It can sneak up on anyone. It’s not known exactly why multiple sclerosis has a higher rate of depression than other chronic illnesses, but it’s believed to be caused by changes in the brain’s functionality along with the emotional stresses of unexpected progression, loss of mobility, pain, social isolation, and financial struggles.

Those of us living with MS are fighting our bodies every second of every day. At times, we feel as if we have slipped into a raging river and the current is pulling us under as we fight the rapids in order to pull our head up far enough to get a breath of air only to sink yet again. We find ourselves lying in our bed with tears flowing, completely worn out, weary, and with  awful thoughts spinning out of control.

All those “what if” thoughts, doubts, fears, and questions flood our minds. They have a way of overtaking even the smallest amount of hope we have left and leaving us with only a tiny strand of hope to pull us up to safety.

That has happened to me more than once. During those times, I find myself feeling alone and worthless in a world that doesn’t seem to understand me, MS, or why I can’t just get over it. It always catches me off guard almost as if I got sucked into a vortex filled with every mixed up emotion imaginable and it pulls me deeper into the abyss of depression. It’s not easy pulling yourself out of such turmoil and confusion. This kind of thing it invisible to the rest of the world, so they just don’t get it.

What I have learned most during those awful, vulnerable times in my life is that I need someone there with me to help me process those crazy random thoughts that I find bouncing around in my brain…not with advice, opinions, or judgements, but with a hand to hold, an ear to listen and a box of tissues near by. Oh, and maybe some ice cream or chocolate.That somehow always helps.

Don’t beat yourself up just because you are having a bad day, week, month or even year. Depression is real and sometimes it’s really, REALLY hard to overcome. It takes guts to talk with your doctor, friend, counselor, spouse, or family member about what’s going on inside your head and heart.

Don’t allow guilt to creep in and cause you to think that you can’t open up about what’s going on. Sometimes we need help to weed through everything that’s going on in our life in order to find hope once again. And just so you know, seeking help is not a sign of weakness. It takes great courage to admit you have a need.

Don’t ever be afraid to ask for help. Sometimes that’s the hardest step you will ever take…but you can do it. I know you can!

Yes, multiple sclerosis is painful

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Living in a constant state of pain is grueling, exhausting and tough… really tough. Someone who hasn’t been in that position will never grasp how difficult it actually is to function during a time of blinding pain, no matter how much you try to explain it to them. There is just no way to put that kind of thing into words.

When pain becomes that overwhelming, you find yourself creating your own methods of mind over matter to try and cope. Sometimes they work, but sometimes the pain becomes so intense that you can’t seem to find any coping mechanism to bring relief. That’s when the tears flow, the mood swings happen and you pray with all the strength you have left inside of you hoping that everything will simply stop spinning out of control.

That has been my world these past few days. The pain has been so intense that I found myself hibernating… more for my own sanity than anything else. I know my fuse can be short when my body is screaming at me with that much intensity. I’m fighting my body every second of the day. I wouldn’t want anyone to be on the receiving end of a faulty mood swing during an I’m-trying-to-cope moment in my life.

Now don’t get me wrong, I truly am a wonderful, nice, calm person… but when I’m hit with excruciating pain that just won’t let up or stop, the monster hidden deep inside of me rises up. I would never be cruel, but I am more apt to say something that might hurt someone’s feelings. And I wouldn’t want to do that.

For me some one the pain is due to spasticity. When my muscles tighten up and won’t release. Even muscle relaxers don’t always work for that. My hands hurt trying to function. Even typing this seems like an impossibility so I hunt and peck the words out. Other pain is from horrible migraines.  The worse headaches I have ever had happen all because of multiple sclerosis. And other pain is due to my body just hurting.

Anyone who says people living with MS don’t experience pain, is full of it. Oh, how I would love to give that person a glimpse into just how painful it can be. Some of those people happen to be doctors and medical professionals who think they know what they are talking about. Here’s a news flash… THEY DON’T! MS hurts.

Although the pain is horribly unbearable, I find that somehow the strength I need to push through during those times comes. I eventually get through it and I gain deeper compassion for others facing similar times of pain in the process. It’s not easy. That’s for sure.

Before MS, I really didn’t get it. Life wasn’t as meaningful or as precious to me as it is now. I took way too many things for granted: people, a good job, strong friendships, laughter, and the freedom to do just about anything I wanted to do and go anywhere I wanted to go.

Now, because of MS, I live my life in a constant state of uncertainty and pain. Physical pain and emotional pain. Yet now I find myself savoring every memory and moment I have… even the painful ones. I no longer take life for granted. I value each day, each sunrise, each raindrop, each tear.

There’s no time for petty arguments or silly whining. There’s no point in trying to one up someone just to make myself feel important. There’s no need for meaningless relationships or power struggles. Each moment I’m given, each person I meet, they’re a gift I’ve been given and something I shouldn’t waste or toss aside.

Savor life. Enjoy every moment. Live today regardless of how terribly tough it may be. You are here and alive for a reason. You matter. You have a purpose. You are loved, valuable and someone that I’m thankful to call friend.

You are a survivor and a precious MS fighter. You are truly an amazing person. Never forget that, even when you are in pain.

Make the best of life when it throws lemons at you

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It’s really nice when my couch lets me out of the house. I try to spend time outside on nice days. Not a lot of time, especially if it’s hot out, but right now it’s still cool in the mornings so that’s always a pleasant time for me. Yesterday, I was able to get out and enjoy a bit of sunshine which was a nice welcomed treat for me.

As I was sitting on my back patio, I noticed lots of new flowers starting to bloom. There was a sweet smell of honeysuckle in the air and the birds were singing their songs from high up in the trees. Everything seemed alive. There was no traffic, no busy people, no distractions, just a calm and peaceful morning for me to enjoy.

I noticed one flower in particular that looked somewhat out of place tucked away in the corner of the yard, but amazingly beautiful with a brilliant mixture of red and orange colors. Maybe it was the way the morning breeze was blowing against the flower’s pedals or maybe it was just my imagination, but I am almost sure that I saw that flower stand taller as I watched it. It seemed to square its shoulders back and hold its head high as if to say, “Good morning, I’m glad you’re here!”

The thing that made this flower’s beauty stand out more than anything else in the yard was the fact that it was growing right in the middle of a compost pile…forgotten and alone…sitting in a pile of broken down waste and scraps.

Have you ever heard the saying “bloom where you’re planted?” Well, this flower was doing just that. It could have decided that life was simply too hard and given up on ever becoming anything of use, it could have decided to bury itself even deeper into the compost pile and hidden itself away forever, it could have decided to keep its beauty from ever being seen by me or anyone else, but this flower was determined to shine…and shine it did.

That flower decided to push its way through all the crap it was given and become a thing of beauty regardless of where it was stuck in life. No one but me, a few birds that were fluttering about in the trees nearby, and maybe a worm or two saw its beauty, but if only for us, it fulfilled its purpose! That one flower gave me a smile. It made a difference.

You may feel like that flower today, like you’re stuck in a stinky, smelly, horrific pile of crap, yet no matter how ugly or smelly things may be in your life, all that junk has an incredible way of producing amazing things of beauty. It may look like garbage to you, but to me, I see something incredible. I see a beautiful you in the making. I see a strength rising up that says just watch me shine…I’m going to make it.

Don’t lose hope. There is still a lot of good to come from your life. You are very much needed. You are not a mess. Because of you, someone’s day will be brighter. They will see you making it even though you’re in the middle of an impossibility and be encouraged by your strength. It’s time to square your shoulders back and hold your head up high. Don’t underestimate your value. Make the best of life when it throws lemons at you and show the world just how amazing you really are.

Words from my heart

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Some people live their lives in the Land of Clichés and Memes. What are they you ask? Well, a cliché is a phrase or opinion that is overused and betrays a lack of original thought and a meme (rhymes with team) is a humorous or thought provoking image, video, piece of text, etc. that is copied (often with slight variations) and spread rapidly by Internet users.

One thing to note…technically all clichés are memes but not all memes are clichés.

I have noticed a trend in people using phrases when talking about multiple sclerosis. Words that once were amazing, but have become so common that they no longer provide the strength they originally carried. Things like:

It could be worse.
Time heals all wounds.
Everything happens for a reason.

Personally, when I’m feeling bad and having a terrible time with MS, I’m not comforted with statements like: I have MS but MS doesn’t have me. That is one phrase that has become so overused that I don’t even listen to the person sharing it. It’s not comforting to me. It was cute the first time I heard it, but now that it has been so overused and worn out, it gives no benefit to my life.

The reality is…sometimes, MS does have me. Sometimes, I have really crappy days. Don’t get me wrong, I totally believe in staying on the positive side of things and looking for the good in any tragic situation, but there are times when I need space to think and grieve, and to decide for myself how I want to move forward. I don’t need words carelessly tossed out as a solution by someone who’s not even listening to the words they are throwing out.

Seriously, if you’ve ever shared a cliché or meme in response to someone dealing with a relapse or sitting in the hospital awaiting test results because you want to bring comfort to them, I urge you to never do it again. Why? Because in a moment of tears, they need time to process the chaos and would get more benefit out of a hug than a worn out set of stale words.

Why not just use your own words? The best thing anyone could say when times are at their worst are words from the heart. And for many, saying nothing at all, simply being there is all a person needs. Standing with them in the pain and holding them up when they have no more strength left to stand on their own… that does more than worn out words.

Instead of quoting from something you’ve heard over and over again, thoughtfully put together your own words filled with care, understanding, sincerity, and lots and lots of love. That’s what brings comfort. That’s what helps bring smiles to a face covered in tears. Well, that and maybe a joke or two to break the moment with a laugh…and some chocolate. Chocolate always helps.

Memory, forgetfulness and multiple sclerosis

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I woke up this morning to my pillow on the floor in the middle of the room. I’m not sure how that happened. I would have loved to have seen that pillow fight. It must have been a doozy…”take that – WHACK – and that – POW.”

I think I am closer to discovering why I’m always tired. It must be all the parties I’m having in the middle of the night with all the toys, dolls and stuffed animals in the house. We must have pillow fights too. I think they are the ones zapping my memory. This way I won’t be able to remember anything when I wake up.

Last night, though, they must have forgotten to clean up some of the evidence by leaving a pillow on the floor. I wonder if they are the ones that drink my coffee too. I will make a nice, hot, perfect cup of coffee and the next thing I know…the cup is empty and I’m sure I didn’t drink it. I’m absolutely positive of it.

I’ve had a few other things disappear too: my favorite sweater, my car keys, my cell phone, towels, and the TV remote. The other day I even lost the eggs a friend brought me. He had a dozen eggs for me since his hens are laying now. When he left, I couldn’t find them. What? How did I do that? I had a few minutes of egg hunting but I found them on my entryway table. I don’t remember putting them there.

Just the other day I was taking a shower, washed my hair but when I got out of the shower I had a head full of bubbles. How did I wash my hair and forget to rinse myself off? That happens a lot for me. Either I wet my hair and forget to wash it or have the suds still in and forget to rinse before I shut the water off. I do all my memory tricks to try and remember but I seem to fail at it most of the time. Sometime I even forget to brush my teeth while I’m in the shower even though the toothbrush is right in font of me. Ugh!

I was writing down a list of things I needed at the store yesterday. I had the list half written, got distracted and went into the bedroom to get my shoes but when I returned my pen was gone. Poof. It just disappeared. I had to get another pen just to finish my list. I still have no idea where that pen went but if I ever go shopping without a list in hand, things don’t go very well for me. I NEVER remember what I’m there to get and always return home having forgotten why I actually went there in the first place.

I think a lot of my memory problems are due to my lack of sleep. I wake up exhausted and go to bed exhausted. I know I’m getting closer to solving my memory problems and forgetfulness. I will let you know when I find out what is going on. I would love to have a few hours of real rest to get my brain a bit more organized.

Now, where did my coffee go? It was right here beside me. Seriously, it was. I’m not making this up. It must have gotten sucked into a black hole. I think I may be stuck in some weird space-time continuum. Maybe I’ll be the one to disappear next? Ahhhhhhhhhhh

Finding the rainbow in the storm

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I woke up Monday morning to a strange sound coming from my bathroom. I wheeled myself into the bathroom and found water pouring from the bottom of toilet tank. There was at least a half an inch of water on the floor. I shut off the water behind the toilet, opened the tank and found the entire flush valve system needed to be replaced due to a faulty rubber washer. Not something I wanted to tackle.

I went to the local home improvement store and bought a new one then came home and changed out all the needed components. It was then that I discovered I needed a replacement braided supply line for the toilet that connects the water to the toilet. The plastic nut attached to the hose had broken off in the night. That was one of the reasons for the leak. I made a second trip to the store, made it home, fixed the toilet, opened the water line, adjusted the water level in the tank and all is well. No more leaks.

To repair the leak I had to mop up a ton of water from the floor. I got more wet cleaning up the floor than taking a shower. Of course I had to take a shower afterwards anyway but wasn’t planning that kind of adventure.

The unexpected happens though, doesn’t it? Sometimes it can be really sneaky and creep up on us, but it happens. Each day is a journey into the unknown. One day you may wake up and discover the sun shining and the next day find yourself in the middle of a storm that is spinning out of control. That’s just how life is. Add multiple sclerosis into the mix and it becomes an outright adventure.

We have gone through our entire existence up until this point in time knowing that each day is unique and filled with change. We try to find ways to predict those changes, but even the weatherman gets it wrong most of the time. Living with MS is no different.

One day you may wake up with a new symptom starting to develop…but you may not. You may notice numbness increasing…but you may not. You may feel more weakness…but you may not. Just as with life, MS changes day to day, and sometimes minute to minute.

When you are newly diagnosed, that can be a scary thing to face. Change isn’t easy. But as time passes you begin to find a routine in a life of change. As strange as that sounds, you do.

This morning, don’t focus on the storm MS has brought your way… look for the rainbow. All storms have them if you know where to look. Put your rain boots on and go splash in the puddles. Find something to smile about. Do something you enjoy. You might get wet in the process, but that’s all just a part of living.

Then dry yourself off and find something to smile about. I’m smiling about having the sense to be able to repair my toilet without calling a plumber to help. No huge bill to pay. Anytime that kind of thing happens it makes me smile.

I will never sugar coat my life with MS

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Have you ever had one of those days when you wished you could just curl up into a ball and hide away under the covers in bed because life was simply too much, too crazy and too overwhelming to bear? That was me yesterday. I woke up in tears… literally. That happens to me from time to time, only yesterday it hit me really hard. Harder than usual.

I hate when that happens. Sometimes no matter how hard I try to remain upbeat, positive and steadfast, I fail. It just goes to show that even people like me who strive to find the good in everything around them actually have times when they wish their out of control life could be put on hold and the pain had a pause button.

I’m human and I’m real. I will never sugar coat the difficulties of living with multiple sclerosis and I never want people to think that MS is a breeze to manage. Too many people out in the public don’t hear of the struggles we go through because too many MSers don’t talk enough about the truth of living with a chronic disease.

I am thankful for those living with minimal symptoms and that can handle the pain with ease at any given moment whether it be physical or emotional. But I know for a fact that’s not me. I talk about the struggles I face because I believe the more the public is made aware of what we experience, the more they will come to understand the reasons we have our unpredictable mood swings, cancel seemingly simple plans and spend so much of our time at home.

It’s not always easy for me to voice my needs. That’s because many times I don’t even know what I need in the first place. So when someone calls or stops by and asks how they can help out, I don’t always have an answer. It’s not because I’m being rude, antisocial or don’t want their help. Most of the time it’s because I simply can’t see past the pain in the moment to know what I truly need. That kind of thing requires too much thought and most of the time my brain just blanks out.

But I can tell you this, what ALWAYS helps is genuine care, concern, support and love. Those things help at any given moment and can be expressed through a simple “thinking of you” text, help around the house, offering to pick up some groceries, or just stopping by for a chat.

My greatest fear is to be forgotten in this fast paced, on-the-go world. It’s easy for that to happen too because many of us get to a place where socializing becomes  extremely stressful and is filled with too many uncertainties and obstacles.

Getting out of the house requires great planning and considerations that many people don’t really think about. Will the place I’m going to be accessible for my needs? Will I have quick access to a bathroom when needed? Will I be in a place where I can remain cool? If a meal is involved, will someone be there to help me cut my food? If I get too tired (which is normally a given in my case), can I leave early? Does it cost because I live on a limited budget and even small expenditures are impossible to afford?

Any number of questions have to be considered in order to leave the house. Some days those questions are easy to answer, other times they are simply too much to face.

I woke up yesterday with my laugh-box broken because the questions in life smacked me in the face as soon as I woke up. If that ever happens to you, give yourself a break and allow yourself the needed time to grieve. Grieving is a real part of living with MS, and it’s okay to have those moments. Just try not to stay there.

I had my good cry already yesterday. The world may never see my tears, but they will always hear my pain. I refuse to be silent in the struggle.