Posts

Sometimes a little change is all you need

I decided to color my hair after years of allowing it to go grey. The main reason was because living with grey hair started making me feel old. I needed a pick me up moment and oddly enough coloring my hair did the job.

I’m back to being a redhead. The change very likely activated the ‘happy’ chemicals in my brain, like serotonin and dopamine, and accounts for the lift in my spirits. It’s like how a change in scenery is recommended for depressed people. My hairdo change has helped to lift my spirits. Now when I look in the mirror I feel more confident and happy.

I’m not sure if my hair will stay red forever, but right now, it’s given me a powerful push in the right direction toward feeling like the best version of myself. For now, I’m going to bask in my changed hair color and continue to find new ways to keep these feelings up even if I let my natural color grow back.

I’ve purchased a couple of boxes of hair dye to use every 4 months or so to upkeep the red color. It’s amazing how something like this can make such a difference. I wasn’t going to let multiple sclerosis define my mental well-being. At least I have some control over something myself.

I have to say I was in a better mood when I went to the store yesterday and even spent more time talking to the clerk and customers. Nothing big, but I know I was smiling more. That’s always a plus.

Don’t blame yourself for the bad days, and don’t despair when they come. Pay attention to your body’s cues, go easy on yourself, and know that, at the very least, making a small change here or there can help lift your mood for the better.

I don’t take good picture, but here you go… no makeup and all.

Change your struggles into something positive

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.

Hang in there

It’s hard to not focus on how you feel when living with multiple sclerosis. Feelings have this way of ruling the day even when you don’t want them to. It takes a lot of energy to manage a chronic illness. That energy is wrapped up into every nerve cell in your body triggering not just pain, discomfort and weakness, but also anger, sadness and fear. That’s something people don’t seem to understand…both those living with MS and those looking in from the outside.

I woke up this morning and everything was hurting, even my hair and clothes. Who knew nerve endings were in those things? Sometimes there’s just too much change happening to even wrap your thoughts around and you find yourself wishing everything would all just go away.

I have days when I’m strong, but I also have days when I’m a wreck both inside and out. It’s funny though…people looking in on my life wouldn’t see it that way. They would see me as a strong, resilient, never quit, go-get-em kind of gal. Someone who keeps standing with every punch thrown her way and who seems unmoved by her circumstances. But that’s only because they can’t look inside my life and see the battles that I fight every day. The battles I fight most people will never know, or understand. And I’d be lying if I said it doesn’t get to me. It does.

I fight back tears with a silly little joke.
I fight pain with a giant cup of coffee and meds.
I fight weakness by staying busy.
I fight loneliness with a movie.
I fight stress with a song.

Every day is filled with a bunch of little fights, sometimes one at a time and sometimes all combined into one giant mess. Fights that at times I didn’t even know I was fighting. Yet here I sit, bruised, battered, and beaten up in this war we call a life with MS.

Do like me, take those battle scars and wear them proudly. You are an overcomer even when you don’t feel like it because you are winning battles left and right. Maybe you can’t do this or that. Maybe life has changed more than you ever dreamed it would. Maybe you are tired, weary and simply worn out, but I know you are not a quitter.

We all hope that this year will be a better year for our lives and for all those we love who suffer so much with this awful disease…and we hope that next year will be the year that something really helpful will be produced, invented, or developed to make MS patients’ lives more comfortable!

Focus only on today. You are going to make it through still standing, even if only on the inside. The struggle is real, life is hard…but don’t let it define you. You are a warrior. I believe in you. Hang in there.

The reality of living with multiple sclerosis

It’s hard when you come to the realization that you are no longer able to use your favorite coffee mug because it’s become too heavy to hold. I am a coffee lover and have a beautiful mug I have used for years to drink my morning coffee from. My routine is to make coffee in my fancy mug, sit in my favorite chair and savor a moment of calm before the world wakes up. Somehow coffee just tastes better that way.

But as multiple sclerosis has progressed in my body, keeping that routine has become difficult. I still make my morning cup of coffee, but no longer in my fancy mug. Now it’s in a lighter weight, no-spill blue mug that I find much easier to hold onto.

I fought making that change, but coffee stains on my shirt were not very stylish and I wasn’t a fan of being burned from hot liquids. Talk about a sad realization.

That kind of change has happened quite often in my life since my MS diagnosis. Some of the things I love or have used for years have needed to be put to the side because MS got in the way. It’s not something I wanted to happen…it’s just a reality of living with MS.

A few changes I have made have been letting go of the shoes that didn’t work with my AFO leg braces for those times I try walking, changing out my silverware for lighter weight ones that don’t exhaust my hands, placing a ramp at the front door so I could go in and out of the house in my powerchair with greater ease, rearranging my kitchen cabinets so items I frequently use are easier to reach, removing the area rugs that get in the way of wheels and feet, adding a rope to different door knobs so I can pull the doors shut behind me as I wheel myself out of a room, and adding a remote control deadbolt lock to the front door so I can lock and unlock the door without fumbling with small keys. All of those changes were things I rebelled against doing, but they have made my life easier and more manageable.

I could have refused to make those changes, but I decided to accept what my body was telling me and adjusted life accordingly. Why make things harder than needed?

Changes happen a lot with multiple sclerosis. You find yourself having to adjust life in ways you simply didn’t want. Some of those changes hurt and some are easy, but never let the fact that you have to make a change get you down. Realize that changes are going to happen and decide to just go with the flow.

Embrace the changes no matter how hard or significant of a change they are. You will find that over time the addition of tools to help you through your day or the removal of things that have the potential of making life more difficult is not something to be afraid of. Change is okay. It doesn’t make you less of a person because you need added tools or different things to help you out. You are amazing just as you are no matter what you can or can’t do or what equipment is needed in the process.

Beautifully broken

Have you ever gone to the beach and taken time to truly examine the seashells that wash onto the beach? Some people are avid shell hunters and spend countless hours searching for the perfect ones. They are looking for beautiful coloration and formation. They don’t even contemplate collecting the broken ones, after all who wants a broken shell sitting on their coffee table?

But then you have people like me who enjoy going to the beach and stumbling across incredible little treasures along the shore. I pick up each shell that stands out to me as the waters ebb and flow over the sand. Some of the shells at first glance look like a perfect creation, yet once I bend down to pick them up, I find them to be a broken treasure instead. Those are my favorite kind and the ones I place in my pocket to take home.

I have a bowl full of broken shells that I have proudly displayed for anyone who comes over to see. Some of those shells are beautiful pieces that could be made into an exquisite piece of jewelry, but most of them are fragile and broken from years of life in rough waters. Some have lost their vibrant color, others have lost their outward beauty, and still others have allowed deposits from the ocean environment to leave a lasting mark on their surface. Each one is broken and yet each one is amazingly beautiful.

Just like those shells, some say that I’m broken. They look at me – at my past mistakes, burdens, heartaches, and even at the fact that I’m living with multiple sclerosis – and all they see are my cracks, scars and the shattered fragments of my life. But the most amazing thing happens when you hold me up to the light. Not only will you see my imperfections, but you will also see what makes me beautiful.

I admit that sometimes it takes everything I’ve got to simply get out of bed in the morning. Many times I don’t want to get up. I wake up before dawn and all the “stuff” I have to do, along with what I haven’t done and the problems that await me, comes crashing down and all I want to do is stay in bed and hide under the covers.

I take a deep breath and gather the strength I need and roll out of bed, sometimes even crawl, to start my day. It’s because of being broken that I am who I am…a battle weary warrior who has overcome much with unimaginable strength, determination and a refusal to give up.

You have cracks, scars and broken areas of your life too. The ups and downs you have experienced are real. Just because you are imperfect and living with a chronic disease doesn’t mean you are worthless. Each one of those things make you uniquely you. You are not broken…you are a beautiful example of how someone can push through all the junk life throws their way and rise above it all shinning bright. You are not broken…you are beautiful.