MS Maze

Bad handwriting. It’s one more item on the growing list of ways that MS is reshaping my life — another loss of an every day task formerly taken for granted.

As MS patients, we know about loss, great and small. Seeing, hearing, speaking… running, walking, standing… driving, earning a living, signing on the dotted line… all contribute to the ever present threat to independence.

Maybe that’s why each new item on the list, no matter how small, causes us to cringe. We view it as another step toward that uncertain future we all fear, but hope will not come to pass. Dwelling on the worst case scenario does us no good, so we force these thoughts to the furthest recesses of the mind. We focus on today, and the abilities we have here and now, in a natural expression of self-defense. Or is it defiance?

Read: The Handwriting on the Wall

Nobody likes a complainer. I know I don’t, and that’s why it’s I often keep MS symptoms to myself… but not today. Today I lift the veil and and share the every day annoyances of living with MS.

Of course, I know I’m in good company. What’s going on behind your veil?

Find out what’s behind my veil… then share your own secrets.

Life Behind the Smile: Confessions of an MS Patient

“What was that supposed to be?” My husband often asks the question in a playful manner. Playful, because he knows exactly what it is.

“What was that move?” I’m teasingly asked the question at work.

Curious strangers avert their gaze and say nothing. I wonder if they are making silent judgments.

So, what is it?

It’s my inability to walk a straight line. I tend to veer right. I lose my balance. I lose my rhythm. I need a wide berth to accommodate my arms, which occasionally fly out to the side to correct my faulty steering.

Read: My Life on a Surfboard

“Don’t worry, I’ll rally before then.”

“You’d better hurry up and get better, we’ve got that trip coming up.”

“I’m sure I’ll be getting better now… I’ve got so much to do next week.”

Even as we speak the words, we know how meaningless they are, but MS plays mind games in our house.

Does MS play mind games in YOUR house? Read the rest of our story here.

Hello. Allow me to introduce myself. I am MS; that’s short for multiple sclerosis.

ABOUT ME:

I enjoy tricking your body into attacking its own myelin, the material that protects the nerve fibers in your central nervous system. I know I’ve done a good job when the signals traveling through your CNS are interrupted, causing all manner of crazy symptoms, from simple numbness and tingling to paralysis or blindness. I manage to hold off medical intervention for as long as possible by masking symptoms, and even disappearing altogether for long stretches of time. For sport, I sometimes masquerade as other diseases. By the time of diagnosis, many patients have had their sanity questioned.

Read the rest of my story here.

I was surprised to meet up with a train on my visit to a local shopping mall. I was even more surprised to find that I was supposed to give it the right of way. Life with multiple sclerosis can be strange and complicated.

Read, “Hey, You with the Cane… Could You Speed it Up?”

Life at the office can get interesting when you bring MS to work.

Tuesday, it was, “Wow… can’t believe you came in!”
Wednesday, it was, “Hey, you’re still lookin’ good!”
Thursday, it was, “You look like Tim Conway.”

Read the rest of my story here.

I like to smile and laugh. I like the people around me to feel good and I do attempt to hide symptoms sometimes. I do that because I don’t want to invite sympathy or questions. I do that because I need time off from it all. But I am unable to hide my symptoms from all of the people all of the time, or even some of the people all of the time.

The the rest of my story here:

My MS is Stronger than My Smile

Wow! MS really got the best of me today. I awoke feeling as though my limbs belong to someone else — maybe that’s why they won’t do what I tell them. About the only skill I have today is working this keyboard. Thankfully, my fingers are still on the job!

To top it all off, I have a migraine as well. Just further proof that when it rains… it pours.

Will I go to work tomorrow? It’s not looking good at all.

This is one of those days when having MS has really gotten to me. I apologized to Jake for how I look today and for all the chores that won’t get done. I hate when I do that. He knows it’s not my fault and so do I. Guilt is just one of those side effects of MS.

Maybe tomorrow will be better!

Marriam-Webster OnLine defines the word disabled as: “incapacitated by illness or injury; also : physically or mentally impaired in a way that substantially limits activity especially in relation to employment or education”

Am I disabled? Are you? The definition sounds fairly cut and dry, but when I try to apply it to my own life, things get a little fuzzy.

Continue…

It’s the foot wiggle. That’s my MS “tell.”

I’m not talking about the big changes brought about by MS. I’m talking about the tiny, seemingly insignificant things.

What’s your MS “tell?”

The recent sharepost by Dr. Gross, “Fatigue and Sleepiness in Multiple Sclerosis”, couldn’t have come at a better time for me. After a month of high energy, I just recently began to slide back into the clutches of fatigue. The first day that it hit again, I tried to ignore it, even though I felt as though my body weight had tripled. The second day, I couldn’t ignore it, but I tried to pretend that it wasn’t so. By the third day, fatigue was winning. Sitting at my keyboard around 3:00 p.m., I felt my eyes closing even while I continued to type. My head seemed so much heavier than my neck could possibly hold, and the fog came rolling in. I thought I’d just lie down for a moment. I didn’t even recall my head hitting the pillow when I woke up t…

You can read the rest of this SharePost by visiting:
Did Rip Van Winkle Have MS?

“What do you mean ‘You can’t see.’!?,” I asked. We were speeding north through Maryland on Interstate 81 heading to NJ for a family weekend. Mandy was a little quiet and, when I glanced over, I saw real fear on her face. In a slightly panicked voice, she said that for the past 15 minutes she had strange wavy lines coming in and out of her field of vision. They had started appearing towards the peripheral areas. Now those lines were obstructing everything and, in places, shutting out vision altogether. With a mix of terror and confusion, she looked at me and said that there was a big hole in my head. I was stunned into silence. Continue…

So, are you crazy? Imagining things? Faking? Just looking for attention? You know what a multiple sclerosis exacerbation is, but what does it mean when your doctor tells you that you are having a ‘pseudo’ exacerbation?

Merriam-Webster’s Online Dictionary defines the word ‘pseudo’ as:

Being apparently, rather than actually, as stated: sham, spurious

Don’t let the word get you down. Your doctor is not accusing you of being a sham. In this case, pseudo has a very different meaning.

Continue…

Detective Ferguson climbs tentatively to the top of the step-ladder. Nervous and perspiring, he is completely overwhelmed when he reaches the third step. His fear of heights manifests itself in the form of dizziness and he collapses in a near-faint. Alfred Hitchcock’s 1958 classic thriller, “Vertigo,” starring James Stewart, uses unique camera angles and imagery to capture the fear of heights as never before. There is one small problem with that. Vertigo is NOT fear of heights. Until recently, I, along with many other people, drew my knowledge of the subject from that movie. Just further proof that life does not imitate art.

Read Full Story…

Two things happened upon hearing her neurologist at Johns Hopkins utter the words “This is MS” while examining the MRI films of her brain. First, there was a feeling of exoneration. We weren’t crazy. All the inexplicable on-and-off-again symptoms that were plaguing Mandy had their roots in an actual, true-to-life disease. Then the other shoe dropped and we froze. Though we were afraid to say it aloud, we each thought the same thing – ‘what now?’

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