Change your struggles into something positive

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Multiple sclerosis just keeps happening to me and no amount of meds, sleep, CBD oil, meditation, chocolate or coffee seems to be able to stop it. I’ve even tried non-GMO, user friendly, vegan ones but no help. Don’t even get me started on using all the proven wives-tale wonders, conspiracy theory miracles and Dr. I-got-the-cure know it alls out there.

How can MS, something as simple as 2 letters, be so difficult? That’s beyond me. After all it’s just 2 letters in the alphabet. It’s not a sentence. But lately I would disagree. I’ve been put in solitary confinement, experienced sleep deprivation, dealt with torture by every ill acting nerve in my body and was even handed a restrictive diet of soft-foods-only due to a lack of muscle control. Ugh, what gives?!

That’s the crazy thing about MS. Whichever nerve it attacks is the cause of the problems for the body. If it attacks the legs… those are the ones hindered. If it attacks the eyes… yep, they have difficulties. If it attacks the bladder… troubles abound. Each person dealing with MS is different because with the trillions of nerves in the body it’s a crapshoot as to which one gets hit. Every day is a risky and unpredictable nerve venture inside the body.

True story, yesterday I wanted something cold to drink because it’s been getting hot here. I decided to make a smoothy because I had all the ingredients needed. Blending everything up makes it easier for my jaw muscles. For me, eating something as soft as a banana can actually be difficult.

I put everything in my blender to smash away, but once it made it look perfectly frapped I couldn’t twist the lid off. My hands were too weak. Weaker than my jaw was. It was so depressing that for a moment I leaned over the counter and a few tears fell. Why me? Ugh!

Then I took a deep breath, grabbed ahold of the lid and twisted for the upteenth time. Amazingly enough it came off. Thank goodness. I didn’t want a perfectly blended smoothy go bad.

I poured it into a glass, got comfortable in my chair and enjoyed a tasty drink. My jaw was really thankful everything was crushed up. It hit the spot…even with a few tears and several worn out muscles.

When I’m having a really bad day I remind myself that life is all in the choosing. Every day we are faced with decision. We may not be able to choose the struggle we are dealt, but we do get to choose how we will respond to it. BTW, tears are allowed.

In life, things happen around us and things happen to us, but how you choose to react to what’s going on is what really matters. Life is all about modifying, readjusting, and adapting in the struggle. Change your struggles into something positive. I know you can.

Taking the easy way

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I had a strange day the other day. I’ve been getting ready for a new living room set that I’m supper excited about. I purchased a blue sofa and love seat along with a beautiful glass top coffee table and matching end table. Most sofa sets are either grey, brown or beige so to find one that was a striking blue color called ink sold me on it. It’s a medium blue much like royal blue and it’s supper striking.

One of the pieces I’m excited to get is a motorized recliner which allows me to recline but also has a lift in the seat making it easier for me to get out of. It has a massage setting too and a way to plug my computer and phone in for charging. The greatest thing about it is that it’s made for someone over 6′ tall so it will be comfortable for me. No more having my feat hanging inches off the end of the foot rest.

I got a notice that the recliner had been delivered to my front door but when I looked, there was no box at my door. I let the company know that I didn’t received it so they issued a refund for me. I told them that I would be reordering the chair because my heart was set on having it.

Here’s the strange thing that happened. Yesterday someone came to my front door to tell me that they received a package that was mis-delivered to them with my name and address on it. They live streets away from me. The box says 1 on 2 for a recliner. Box 2 will arrive today. I’m excited. The company will have to make sense of the refund and the new order I’m wanting, but at least I won’t have to wait weeks for a chair to come. It’s already here. Somehow things worked out for me.

You know, I was thinking about all the things we use to help us live an easier life when a disability comes along making everything more complicated. A chair that helps lift you up…now that’s amazing to me. Funny thing is many items aren’t designed for the disabled. I’m always looking for items that help  make life easier. Not because I’m lazy but because everyone needs help even if they don’t say or think they do.

Am I trying to take the easy way out by using a chair that lifts me up to help me stand or transfer to my wheelchair? Since I can’t just stand up like a healthy person, the help saves me time, energy and at lots of tears, so yeah… I’m taking the easy way. Live in my body and let me know if it’s really the easy way. It’s actually quite complicated… never easy.

The way I see it is the more options I have at helping me to do something means hope and I need lots of hope living with MS. Having hope is having an expectation that something good will happen in the future or that something bad won’t happen. It won’t solve all of society’s problems but will bring you some added sunshine in the darkness.

I see a few rays of sunshine lighting you your day today. Don’t get too discouraged when you look around. There’s always hope. I’m believing for the best for your life today.

To those not living with a chronic illness

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Whoever you are, I fear you will never learn the injustices people living with a chronic illness endure all because they are facing the unknown and the unseen as their body is destroying itself from the inside out.

I fear the gifts and strengths a disabled person  carries within them will be dulled before they are able to share them with those who need them the most.

I fear you will cease to help a disabled patient in need because your own life is more important than the needed medical equipment, meds and even vitamins or supplements that would greatly benefit their lives.

I fear you will never know what it’s like to be disabled, abandoned, homebound, and not believed when sharing their troubles with those closest to them who should be their support…but aren’t.

I fear you may fail to see the worth of the disabled because it’s not a popular thing to do and it disrupts your day too much.

There’s nothing I can do to wake people up. Many won’t read this and others will simply discount it as nonsense, but one thing I know is that regardless of what troubles happen in my own life, whatever disabling symptoms arise and consume my day, I won’t quit. I refuse.

Positive affirmations that will change your life

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There’s so much evil happening in the world today that you don’t know who to trust due to the amount of disinformation taking place everywhere you turn. Sadly the spreaders of disinfo are determined to purposefully confuse, agitate and divide people. Don’t let their words and actions negatively impact you.

Whether you’re dealing with stress, need a confidence boost, or simply want to give yourself a pep talk, positive affirmations are a powerful tool for rewiring your thoughts and shifting the chaos in your day. They are phrases that are meant to uplift and inspire you to be your best. Repeating self-selected phrases can do wonders for your day. I find if I read through some of my favorite ones, my day gets better. It doesn’t change my troubles, but it changes me and what I’m focusing on.

One of the beautiful things about affirmations is that they are super easy to work with and you can choose the ones that speak to you—whether you found them on a list or you made them up yourself. It’s important to look for affirmations that really resonate with you and the person you want to be. I find writing them on post-it notes and placing them around the house for me to see helps. I have some in my bathroom on the mirror, some on the refrigerator and some even in my van on the steering wheel.

Repeating positive affirmations, mantras, and meditations are all great ways to prime the brain to make a change. The point of affirmations isn’t to magically cast a spell on your life but rather to start shifting you into a more positive mindset so you’re better able to line up your thought to help clear the chaos around you.

It can be easy to get caught up in negative thought loops, but with a few personalized and empowering affirmations paired with some honest self-reflection, you can slowly but surely start to unlearn and reshape those patterns.

Some Positive Affirmations:

  1. I release all fear that tried to tell me I should be somewhere different.
  2. I need only focus on right here, right now.
  3. I can get through difficulties.
  4. I’m doing my best.
  5. I am enough.
  6. I offer myself rest and relaxation.
  7. I am deserving of my own love and care.
  8. I care for myself because I love myself.
  9. My self-care is a priority.
  10. I treat myself as I would a dear friend.
  11. I am so grateful to be alive.
  12. I’m going to have a great day.
  13. Today and every day I am blessed.
  14. No challenge is too great for me.
  15. I wake each morning with a smile.
  16. I am strong.
  17. I am capable of overcoming anything.
  18. I am resilient.
  19. I can get through hardship.
  20. I am a wonderful person.
  21. I love who I am.
  22. I am courageous.
  23. I learn and grow through difficulty.
  24. I always pick myself back up.
  25. I will press on and go forward.
  26. I release what no longer serves me.
  27. I am proud of myself.
  28. I am living with purpose.
  29. Every day is a gift.
  30. Every day I embody the best version of myself.

Multiple sclerosis is your reality

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I know your heart is heavy. Right now you are on the verge of tears…tears that have been collecting deep in the spaces of your heart and flooding over into your mind. You have met reality face to face and you don’t like it one bit. Multiple sclerosis is your reality. It’s real and you feel it deep. You are finding yourself overwhelmed and challenged in every area of life, and you feel the weight of simply getting through today to be daunting. Laundry has piled up and errands are on hold as you sit alone feeling like you’re about to break.

You don’t feel very brave right now. Sure, when you go out the door with a smile plastered across your face, you are brave. But that’s a mask you wear out in public to cover the pain. Here you sit, alone, and the mask comes off. Your thoughts are running wild and the tears begin to fall.

Where’s your brave when you feel numb to the core? Where’s your brave when all you see is clouds before you and not one ray of sunlight can be found? Where’s your brave when you run into walls, trip on invisible obstacles, can’t walk across the room, choke on air, your body trembles, and you drop everything you try to hold? Where’s your brave when you feel defeated? Where’s your brave then?

I want you to know that you are brave even when you can’t feel it. There truly is strength in you. A strength so amazing that even you don’t know it’s there. You’ve held on this long…that is brave. I know it’s terrifying. I know it’s not easy. You don’t see it, but I sure do. You are a brave multiple sclerosis survivor in this fight.

Rise up and be confident in who you are. Don’t give up just because the road is hard. It takes a strong person to wake up in the morning and face a new day surrounded by challenges, pain and uncertainty…and you are doing it.

Discouragement will happen, exhaustion and stress will find you, but don’t allow your heart to grow weary too. It’s okay to let the tears flow. Sometimes that’s all you need to do to lighten the load. Let it go and find your brave today, because you are brave! I can see it.

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.