The Other Side of MS

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The Other Side Of MS

When you are caught up in the midst of the eye of the “MS storm”, it may seem hard to keep the belief that there is a place of calmness waiting on the other side. But there is.

You will rise out of the shit storm we all know as life with MS, a more pliable, stronger version of who you once were.

No, “Chicken Little”, the sky is not falling, it is merely changing.

I have lived with MS now for almost twenty years. I have cried. I have been scared. I have felt hopeless. All of these emotions among a myriad of others you will feel at some point in your journey of living with MS.

It is strange that now that the dust has settled and I no longer hover in fear of what tomorrow may bring, I can offer someone caught up in the clutches of MS, proof that there is life after the diagnosis.

Sure, I still live every day with my battle scars but they no longer define who I am.

It is so easy to get caught up in the fear of the unknown. The worst thing that this diagnosis brings is uncertainty and “what if’s”. You cannot stop living your life worrying that you might not be able to see your child’s next birthday or be able to see them graduate from high school and one day get married.

If you live in this state of fear, you are living your life in a state of limbo. Suspended in a life of self-made purgatory. I

have now come out of the other end of the tunnel and I offer my hand in encouragement.

Take it and meet me here.

It is a place filled with peace.

Cindy Lee Lothian

October 20, 2014

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All My Troubles Seemed So Far Away!

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“Yesterday, all my troubles seemed so far away. Now it looks as if they’re here to stay. Oh I believe, in yesterday. ~Beatles~

This morning as I lay in bed watching the sky lighten to a brighter shade of gray, I said a silent prayer of thanks. Grateful for being blessed with another day of experiencing everything life has to offer.

This might sound strange or even unbelievable to someone who has not experienced living life with MS. They would probably look at me like I was delusionalor had three heads.

In the famous lyrics of the Beatles classic song “Yesterday” all my troubles did seem far away. Life seemed at the time carefree, bursting with endless possibilities and hopes for the future.

But stop right there. You can not dwell on what was!

If I have learned one thing after living with MS for twenty years, is that you can not focus your attention on what you used to be like. The things you once might have been able to do but now you can’t.

You need to shift your mindset into being grateful for what you can now do and experience.

I might not be able to drive my car anymore feeling the rush of independence just going somewhere on my own. I can no longer curl up on a sofa on a rainy day with a treasured paperback novel as the words are now no longer visible to my damaged optic nerves. I might trip over unseen curbs or lament the fact that I cannot see clearly the vibrant colors of a fall landscape.

But I can see that today is a new day and full of beauty. I just have to look at things with a new appreciation.

So I am writing this as the new day dawns outside of my multi-paned window to remind you not to focus on yesterdays, but to embrace your todays.

There is goodness in your life. Do not let MS blind you from seeing what matters.

Cindy Lee Lothian

September 15, 2014

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Unmasked!

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Unmasked!

There was a time, I admit, when I was the girl who still cared what people thought or were saying about me. Whether it was in the school playground as a child, the teenager embarrassingly changing into gym clothes in the girl’s locker room or the young woman who suddenly found herself diagnosed with MS.

A scary sounding word, it’s wrath unpredictable.

“Oh I am so sorry to hear that”,was the initial response I would get along with the pitying looks. Behind closed doors or whispered over the phone lines was a whole new territory. A new playing field for everyone to talk about what a terrible disease I had been given and all the while thanking their lucky stars , God, or the universe, that it wasn’t them.

For years, my family and I, kept this deep dark secret that someone in our close knit family had just been delivered, what I then thought to be, a cell on death row. I would pretend for years that I could see things that I really could not for. MS had repeatedly played havoc on my optic nerves, leaving enough scars to prevent me from driving my car again or reading a paper back novel. One of life’s simplest joys which was now an impossible luxury.

Today, I can look back from a place of acceptance and I am left wondering why I had wasted so much energy on pretending to be what everyone expected, “ok”. It only took falling off a miniature golf putting hole and breaking my shoulder, to landing on a wintry airplane tarmac face first amidst snow and ice, to tripping over an unseen curb and landing nose first onto the concrete, causing a mini scene outside a local airport terminal.

Why did I care so much?

Who exactly was I trying to impress?

Obviously, not myself.

For if I had stopped living from a place of fear and shame years earlier, , I would have been in a much more peaceful and less fearful place. There is no shame to be felt. No need to stand in judgment of others. By accepting your life for “what is” opens the door wide open for you to take control and start living your own life again. I have now come to accept the use of a walking stick if I feel the need and don’t really care who I “think” might be staring.

After all, the only person you need to please is the face you see in your own mirror..

Cindy Lee Lothian

August 16, 2014


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Fallout Be Damned!!

 

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My mind knows it is happening. My heart starts to race with the sudden surge of panic. My voice is trapped in my throat the words frozen in my mouth. The only thing that doesn’t know it is my arms. Why don’t they reach out and protect me?

Disoriented, dazed, rattled I sit on the floor after yet another random fall this time tripping over my good intentions. That being my eight pound dumbbells that I recently purchased to get back to working out.

The sequence of events is always the same. The location might change, the body parts involved vary but the outcome is always the same. My mind knows I am falling and danger is imminent but the signal does not get to my arms in time to react.

This morning,I sat on the hardwood floor of my office, the treadmill on my left and the yoga mat on my right. I sat for five minutes before getting up taking stock. My arm still works, my leg is bruised but not broken and thankfully my head did not kiss the floor this time.

It is times like these where I can be at risk of losing my “keep a stiff upper lip” attitude is in jeopardy.

Living with MS and the constant lack of balance among the myriad of other daily challenges can only be understood by someone who has experienced living life with MS. Do not get discouraged for you will pick yourself up, brush yourself off and carry on like the brave soul you are.

Look at me, I made it up off the floor and am here writing to let all you other clutzes to let you know that “s*** happens” but forget about it and move on.

Cry if you want, scream if must but never let it beat you!

Cindy Lee Lothian

July 20, 2014

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What I Wish I Could Tell You~

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What I Wish I Could Tell You ~Cindy Lee Lothian~

What I wish I could tell you threatens to bubble up and explode from my mouth, but the words quickly die as soon as my lips start to part.

Would you even begin to understand? 

Could you really feel how scared I really am?

When my vision started to fail, I was left alone in the dark. How could you see the panic that shadowed me with each further degree of darkness? Did you see how I would close one eye at a time to repeatedly test what I could and couldn’t see?

Did you understand how out of control my own life felt as I seemingly had no control over what was happening to my own body?

I wish I could tell you how fatigue robs me some days of enjoying even the most simplest things. How taking a shower can seem like an unobtainable goal or how it makes me feel when I see the look in your eyes after I finally emerge from my bed after a all day nap.

I wish I could tell you what a thief nerve pain is robbing me of the ability to enjoy a day of moving freely without having to reach for a pain killer every four hours, searching for relief in a codeine fog.

I wish I could tell you how I feel but I honestly don’t know if you would even ever understand.

The only way to be heard is to start somewhere.

Are you listening now?

cindy Lee Lothian

June 21, 2014

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3 Things I Wish I Knew Then About MS!

 

 

ImageWhat I Wish I Knew Than!

It’s my party and I will dance if I want to!

Yesterday, I celebrated my birthday and I used the day to reflect on my life, I realized that this was not a celebration of the day I was born, but rather a celebration of the twenty year milestone of living with the “condition” called MS.

I use the word condition because the “d” word disease puts you in a constant state of negativity right out of the gate. The moment you leave the doctor’s office after receiving this label you are already starting the fight with a defeated mindset.

When I look back on my twenty eight year old self and the fear that this diagnosis brought with it, I find myself wishing I could give myself a hug and reassurance that no path is set in stone. We all know that they call Multiple Sclerosis the snowflake disease and aptly so. The rate of onset and severity can can be so different in each individual. With this said, I am a firm believer that alleviating all stress in your life wherever possible, maintaining a healthy positive attitude can all play a role in possibly lessening the chances of your body being under attack.

I can hear some of you screaming at the computer monitor now while reading this, pulling out your hair in exasperation of one more person making it all sound so easy.

No, it is not easy. Each day I am thankful for another day of living my life the best way I can. I can hardly remember what my life was like before it became intertwined with the MS condition known as the scary monster. What would it have been like without the constant worry of not being able to do the simple things in life anymore in the mere blink of an eye? I will never know and perhaps do not even care because without the path I have walked on for the past twenty years, I would not have become the woman I am today.

Cliché as this might sound, there is nothing like a reminder of our own frailty and mortality to really make you sit up and take note of what is really important in your life.

So as my birthday has come and gone, I have taken my younger self by the hand.

Cindy Lee Lothian

May 20, 2014 Continue reading

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MS, LOVE & SEX?

 

ImageMS, LOVE & SEX?

When my husband spoke the words I don’t love you anymore, I felt like I was traveling at warp speed on the SS. Enterprise with Captain Kirk at the helm. Traveling to places no man had gone before.

I found myself crying in the darkened room of my son’s bedroom taking stock. I had MS and was legally blind. I could not drive anymore and the person I had relied on the most had just closed the door on our fourteen year marriage. I had two sons to take care of and God was I tired.

That was then and this is now. I can tell you I did travel to dark unknown places living independently for the first time in my life. I felt free to be who and what I wanted to be. No one to feel I needed to impress or to accommodate. I was suddenly lifted of the burden of always feeling I was not good enough.

As you know,MS can be a harsh test for even the most solid and loving relationships. I often hear from many readers that they are blessed with a loving and understanding partner who is always there for support or just a well needed hug. On the flip side of course, like me, there are many suffering with MS whose relationships could not withstand the pressure cooker that living with MS can become.

“I believe you”.

“I care about you”.

“how can I help”?

Are thse the things you are hearing in your relationship?

I encourage you to examine your relationship right now. Is it supportive and nurturing or do you feel like it is suffocating you, leaving you feeling pressure and guilt for not being what you think you need to be? Only you know what your needs are when it comes to sharing your life with your partner and you deserve to be happy and loved. Do not let MS make you feel like you have to settle for a relationship that does not fill your life with meaning.

Sexual intimacy can often become a problem when living with MS and can certainly vary depending on your condition. Some people tell me that that is the last thing they are concerned about and others still want that intimate connection with their spouse. Sex of course doesnot have to involve intercourse, making each other feel pleasure comes in all forms. Be open about what each of your needs are and try to listen without judgment.

If you are currently where I was flying shotgun through the unknown on the S.S. Enterprise stay calm. You are merely an explorer about to discover new areas of yourself that you never even knew existed.

Enjoy the journey for with every change there are new possibilities.

Cindy Lee Lothian

April 21, 2014

 

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