In The Night

maxresdefaultI come to you in the night, restless, sleepless and in pain.  Difficult days have passed and more to come.  There is no end in sight.  Last night I stayed up with the man in the moon and went to bed with the sun rising.  Music got me through that night.  I composed and the pain became a part of the rhythm of the song.  At least it made sense in this venue, the throbbing keeping tempo.

Tonight, or should I say early morning at 2:58 a.m., there is no music in me not for lack of trying.  This time pain became the focus and nothing would stand in its way.  It wanted center stage and got it.

It amazes me how much we can take.  You have to take it.  It’s not going away.  It’s a part of our lives.  Those of us who are fighters, cook with it, clean with it, pursue hobbies and work with it.

Those of us who are not fighters, succumb to it.  Lie in bed with it.  Curl up without getting dressed all day.  Let the house go and enhance their losing battle.

Vertigo, seeing double, unable to control the movement of ones eyes, spasms in legs, arms and hands.  Confusion, incredible fatigue, narcolepsy tremors in hands and head.  Leaning body and head and–pain, pain, pain.

Even if you’re surrounded by hundreds of supporters who love you, there is no one to talk to.  You can try to explain, at least in the beginning, but people just don’t get it.  Now you lock yourself inside your head and don’t bother with explanations.

You quietly sit and listen to people’s chatter while you urinate into your adult diaper.  No one knows but you.  You excuse yourself and take your cane as your companion to the bathroom to clean up and change.  You return and continue to listen while a myriad of other things are happening to you that no one is aware of.  You’ve learned to mask it well.

My mask is my smile.

My take on this:
The reason I place this on the bottom of my blog is because the inside of me pours out while I'm writing.  I'm not really all that aware of what I'm saying or where I'm headed each time I sit down to write.  I'm not an itemizer of what I've done during the day.  I've read too many blogs like that and quite frankly, I find it boring.
When I'm done writing, I sit back and read what I've written.  It is at this point, that I give the blog a title.  I think most people first have a title and then fill their blogs with something related to it.  Not here.

It is also at this point that I can read what I've written and decide, should I say something about what this author has spit out or not?  

So, my take on this---

I don't often write an entire blog that feels so negative.  This one came out that way.  I've had too many sleepless nights in a row.  However, I know me and I respect me.  I respect the person I've become and the strength that I have learned to develop in order to keep myself out of my wheelchair 24/7 and the myriad of other things that I do each day to keep my mind active.

One thing that struck me was this thing about "no one knows".  This is true.  They know but they don't know.  In order to show compassion to us they bring the focus back around to themselves by mentioning that they too are tired which is completely just the opposite of what a person with MS wants to hear.
No, you do not feel as I do.  It is my ambition to make you understand.  To teach you about this disease in the most profound way by showing you, in detail, my life through my words.  It is my ambition to talk about this to groups of people and educate on being a solicitous listener.

We need people to talk to.

For me, loneliness is the worst part of this disease.


Heated Up!

unusual-shape-fruit-vegetables-16__605The days have turned beautiful here in New Jersey.  I stand at my door and hear conversations of couples out for a walk,.   I watch joggers run, some apparently new at it and others who look like they were born to run.

I have attempted, several times to go outside and start my vegetable garden.  I have laid out the area to be run through by a tiller like grating carrots in my kitchen gadget.  However, I don’t own a tiller so I lift off the grass with my small hand spade inch by inch.  I then use my, gadget, that looks like a 3-prong fork and claw at the earth like a worm.

I can only work in my back yard maybe half an hour before I know that it is time to go indoors to cool off.  If I don’t, I will turn into a puddle laying on the ground unable to get up.  I don’t want that to happen while I’m alone.  This is known as heat intolerance common to Multiple Sclerosis.

Multiple times a day, I go up and down my 3 steps   Every one of those steps cause me great pain due to spasticity.  My legs, due to spasticity don’t work like everyone else.  What I have to do is swing my leg to the right or to the left and pull myself up.  The leg stretch that this causes, responds with a nice stretch, yes, but it also causes a lot of pain.

I managed to plant my carrots with my husband’s help.

My take on this:

What’s important to note here is that at least I do get things done regardless of pain or heat intolerance.  I almost view a challenge as a method of going out and fighting against myself to be myself.  Does that make sense?  At the end of the day, when I’ve done what I set out to do despite the challenges or pain, I’ve won one small battle.

Step Into My Shoes (Multiple Sclerosis life)


my_lonely_island_shoes_by_raemackattack-d3e6be5Step into my shoes.  Walk my walk.  Tell me where you are going during the course of a day?  Has it been interesting?

Have you interacted with people?  Have you smiled and spoken to others?  Have you learned something?  Have people evoked responses from you?  Have you been out in the sun?  Have you had a change of scenery?  Have you laughed out loud?

Did you see something beautiful?  Did you see something new?  Have you felt compelled to help someone or have you been compelled to avoid someone?  Has someone made you feel good?  Has someone acknowledged your work?  Have you felt like you have accomplished something?  Do you know your place in this world?  Do you know who you are and how you fit in?

Has someone credited you with a job well done or not done?  Have you seen children playing?  Have you gone out for lunch? Have you been invited to do something?  Have you hugged someone?  Have you met someone new?  The list goes on and on.

Step into my shoes again.  You are in constant pain.  You are drugged up.  You are incontinent all day.  You go to the bathroom more times than you can count during the day, trying not to leak before you get there.  You are fatigued to an extraordinary level.

Fatigue doesn’t mean sleepy.  It means that your head is too heavy to hold up.  Your legs feel like you’re walking in the deep sea against the tide.  Your hands can’t hold onto anything for very long before it drops to the floor.  You feel motivated to do something and in the next second, it feels like an incomprehensible mountain to climb.  You start something and then you feel too brain weary to continue it.  You leave it for later, but later doesn’t appear.  At the end of the day, you collect all the things you set out to do and tell yourself you will do it tomorrow, but oftentimes tomorrow is weeks later.

Walk my walk.  You have to lean on things or else you wobble or you may fall.  You are leery of walking because you may fall or bump into something painful.  Your feet drag on the floor particularly while wearing shoes.  This has caused falls because you catch your feet on the edge of the carpet or just because.  You lean over and down to the right even while sitting.  You are embarrassingly aware of how you look to others, that is; if you go out anywhere.  You are oftentimes not wanting anyone to assist you while walking because you don’t want to appear feeble.  Then there are times when you know you need the help and gratefully accept the help regardless of how you appear.

Feel my pain.  Feel the pounding in my head.  Feel the rigid neck and shoulders.  Feel the spasms in my back and in my legs.  Feel the pain of sitting due to the pain in my legs and buttocks.  Feel the pain in my fingers.  This does not allow me to work with my hands for hours at a time like I once did not so long ago.

Feel the pain in your stomach.  Feel the sudden pain of someone smothering you around your waist and chest so that you can barely breathe (MS hug).  Feel your fingers locking and your toes locking.  Feel the pain of stepping on something that hurts the bottom of your feet. Why is this?  It’s because in order to partially solve the feet dragging with shoes on, you go barefoot all day.  Feel the pain of having to go up or down steps.  Feel the humiliation of having to crawl up the steps.  Feel the strange twitches in your face.  Feel the icy burning in patches in unexpected places on your body.  Feel the pain of having double vision.

Feel the pain of knowing you have lost hours of time because you probably fell asleep or because you just don’t recall that time.  Feel the pain of being burned every day because you cook at the stove and your hands don’t realize how hot something is.

Feel the pain of confusion, of trying to think logically all day long.  Logic is elusive, there one minute gone the next.  Feel the pain of loss of words.  Even as I write, I have to stop numerous times to find the words that I know are there but are playing hide and seek with me.

I write to you because it is expressive.  The words write what I can’t say because at the time of discussion, the conversation moves too quickly for me to accurately speak my mind.  Instead I jump around and even I know that I’m not making much sense but I can’t do anything about it.  It’s only when the conversation replays in my head, that I find the words I really wanted to say.

Writing has become my refuge.  It is my way of having a conversation.  After all, there is no one to communicate with during the day.

Step into my shoes.  I am alone.  I no longer know how I fit into the world.  I know that I am worthy of acknowledgement but there is no one but you in my life.  I’m sorry but you are not enough for me.  However, you are all I have and if you walk out the door angry, you isolate me even further.

I am in such pain as I sit here and write.  My leg hurts and so does my heart.  I can fix my leg with a pill, but there is no pill to ease the pain in my heart.  The pain in my heart is not because of you, it’s because of a lack of people’s inability to understand the life of a shut-in person.

Of course, if we explained ourselves better, then perhaps they would understand.  However, for most of us, we see the distancing stare when one tries to explain the life of a person with Multiple Sclerosis or the life of any person who is chronically ill.

I’m tired now. shoe1



I Gave Myself A Purple Flower Today

safranI gave myself a purple flower today, Mother’s Day.  I went into the back yard and was so hoping something had bloomed.  I found one purple flower and I thought to myself, this is appropriate.

I snipped it carefully from the vine and searched for something small to put it into.  I finally decided the small cream server would work.  I filled it with water and placed the flower in it, then took it to my desk.

I now sit here before you writing with a huge lump in the back of my throat.  It’s been there for a couple of days but now it almost wants to gag me.  I decided that perhaps writing, would get it out.  If that doesn’t work, then composing  music should work.

It just occurred to me that I should post a link of my original compositions on my sidebar.  I will do so shortly, in case you would like to hear about how a patient with Multiple Sclerosis has therapeutic discussions with magical musical notes..

I don’t talk to a psychiatrist like I once did, instead I get so much more from writing or composing.  It says precisely what I want to say and no more. It is not there for critique, it’s simply there because it had to have its way with me.

This article is about how emotions play an integral part on how one feels or does not feel physically.  Emotions and Multiple Sclerosis are linked.  Remember all those times when trying to be diagnosed, doctor’s would insult us by referring us to psychiatrists instead of listening and setting aside the emotional upheaval at a doctor visit to filter out what is pertinent regarding symptoms.

What doctors don’t get is that the myriad of unusual symptoms is new to us. Many of the symptoms are bizarre.  After all, we are talking about the brain here and and its’ neural pathways.

However, the doctors weren’t far off the diagnostic beat either.  Emotional upheaval does play a part in flare up of symptoms, but once again, emotional disorders are a symptom of MS.  Instead of dismissing, a woman in particular, as being overly anxious, they should keep in mind MS and Depression can go hand in hand.  Regardless of how a patient presents themselves, there should be diagnostic tests run.

I gave myself a purple flower today.  A holiday I absolutely hate is upon us.  Mother’s Day.

I gave myself a purple flower today, because there was no one around to give me one, and even if they were around, I would still have to give myself this token of a flower.

I Lean!

leaning flowersI never knew that Botox has many other uses until my Multiple Sclerosis Neurologist told me that he could use it on me to solve my problem.  No, I didn’t ask him to take care of the slowly creeping wrinkles on my forehead, or the tiny little spiders weaving their veins around my eyes, or even the problem of keeping lipstick within the confines of my lips since the once pronounced and well-defined borders to kisses are now melting away.  I don’t pucker up that much anymore.zoff the web site

Approved Uses:  BOTOX® Cosmetic is a prescription medicine that is injected into muscles and used to temporarily improve the look of both moderate to severe crow’s feet lines and frown lines between the eyebrows in adults.

Much to my surprise, my Doctor wanted to use it on my neck.  Why?

Okay, life is off balance for me.  I mean this literally.  I walk funny, I lean over to the right.  I see double so can’t walk a straight line among many other weird things that happen when you see double.   I jerk.  Get your heads out of the gutter!  I jerk due to Myoclonus.

I apologize for that comment above about jerking.  It’s me who should get my head out of the gutter.

To make a long story short–My Neurologist noticed that my head leans to the right.  I  was already aware of it.  In fact I wanted to mention it to him several times, but always forgot.  That’s why a person should make a list when they go to the doctor.

It gradually dawned on me that I was seeing things from a different perspective than was normal from me.  I mean this literally.  It seemed that I was largely looking at people’s belly buttons or even as far down as their feet and it took great effort to bring my head up to see their faces. Grant you, I’m a short person to begin with, so it’s not unusual for me to be looking at people’s chests prior to bringing my head up to look into their eyes, but this was ridiculous.  What became even worse is when I wasn’t looking at other people’s shoes but at my own.  It was the shortest distance.  Then to top that off, I began to bump into the corners of walls that jutted out because I couldn’t see far enough ahead to notice the wall there.  I gave myself some serious bumps on the head because of that.

Now one would think that I would remember to tell my doctor about these problems when I saw him, but you need to understand that by now, I was seeing my doctor every 3 to 6 months instead of monthly.  By the time I was due for another visit, I had a long list in my head, not written down, that I wanted to discuss with him, so things did fall by the wayside.  Then of course, on the ride home, you remember all the things you wanted to discuss that you didn’t get around to.

What was particularly an irritant to me, was the fact that my body was leaning over to the right as well.  I think my right side of my body was feeling like it too needed to drag along with my head.  It became difficult to sit in a chair without holding myself up with pillows or making sure that I had an armrest to lean on.

Think about all of the things we do that requires sitting down.  Well okay, perhaps “requires” is not the right word.  Let’s rephrase.  Think of all the things we do where we customarily sit down.  There’s a multitude of things during the course of a day, especially if you’re a couch potato.  I’m not one.  What I am is a sit potato.

I sit when I compose music.  I sit when I’m painting my oils.  I sit at the computer.  I sit to knit.  About the only thing I don’t sit down for is to cook, however; I may as well be sitting since I’m so short and am constantly burning my arms reaching over from one pot or another because of my short reach.

Perhaps I look like I’m sitting when I’m walking with all this leaning around that I’m doing, what with being so close to the ground to begin with?  I’m only 4’10”.

With gratitude in my heart, my Neurologist brought up the subject to me. He noticed that I was leaning over.  He said he noticed it in progressive office visits, but like me, forgot to bring it up as well.  Today, however; since I was his first patient of the day and he happened to be walking in just behind us, he had a chance to see how bad it was even while I was walking.

So before this article gets too long, I am going to continue this on the next blog.  It’s a long story about my foray into the world of Botox.


My take on this:

Always make a list if you know there is a long visit between doctor visit.  I still don’t do this.  Don’t do as I do, do as I suggest. 

Keep in mind that 90% of all medications whether they are used for something that one commonly knows them to be used for, are usually also used for things that is not so common and in fact, be a complete surprise.

Chaotic Week

pain-measurement-scaleIt has been a crazy week in this life of a gal with Multiple Sclerosis.

The right leg is giving me such pain that I wish I could find an orthopedic store where I could swap out the leg for a painless one.  It gives me constant pain, and in particular, intensified pain when I sit down on a hard surface.  I can barely sit still.  I must look like I need to use the restroom when I sit and jiggle around.

I had a lovely, what I call “beebop” day with a dear friend of mine.  However, I did the jiggling dance on my chair when we went to a restaurant for lunch.  I don’t know if she noticed it, but I couldn’t get done with lunch fast enough so that I could stand up.  Unfortunately, at least in the pain department, this is not the nature of our friendship to get up and go immediately after eating.  Don’t get me wrong, I loved being there with her, but I would have preferred talking while standing.

I’m not sure why I have such intense pain in this leg.  I had this pain in my left leg a while back but when I had surgery in my lower back recently, it went away.  Perhaps the pain decided that it would revisit me in my right leg?  Does pain have intent?

Change of topic because I don’t like focusing on pain.

chaosMy husband and I decided to move rooms around.  In other words, move the office into another room, make room for my oil painting projects, redefine another room where I compose and record music,  and  dedicate another room for my knitting stuff.

Do we have a large house?  No.  We have a normal size house and the problem that I have is that I do so many things, that I need space for the things needed to do these things.  (Crazy sentence).

We are talking about making the dining room disappear since we never use it for that, using the en suite for sleeping and storing my knitting stuff, and taking the office, where I also do my composing of music and my art work, change it about moving some things in and some things out.

Okay sure.  Chaos ensued.  Why?  Because while my husband was away at work, I decided to get the ball rolling.  Little did I know that the ball was actually a boulder.

Hey, I managed to get a lot of things done.  Grant you, I did things in a very strange way, but I did it.

Cognitive thinking took over or should I say, cognitive thinking, what little I have of it, took a hiatus.  It didn’t want to try to keep my mind from chaotic decisions.  I would leave too if I could.  I will talk more about this at a later date.  I will also talk about how I managed to move things around with crippling pain and a weak body.  Like I said above, I don’t want to focus on pain or lack of brain material in this note to you.  Let’s just say that by the time my husband arrived home, I was a simpering puddle sitting on my chair, barely able to move.

Today I pick up the newest member of our family from the airport.  He doesn’t have any baggage and it should be fairly easy to maneuver the crazy airport in Newark.

He is to be picked up at another building other than United Airlines.  Why? He is a puppy that I purchased and he lived in Florida.  After weeks of trying to decide and research, I decided on him.  He doesn’t have a name yet but once I see him, one will come to me.

This is what I meant to write about.  But you know me.  I had to throw in all the other stuff above.





Are You Drunk?

3882fab38d735532e4b2175a420e8209I remember when I took a walk down the main street of Princeton, NJ.  You need to understand that this is a very wealthy community and rather elitist.  So I was walking down the street and couldn’t find the center of me.  That’s what I call it when I’m off balance.  This dapper man with a coat and hat on, came up to me and said, “You should go home and sleep it off.  We don’t like people walking down here inebriated.”

I was so stunned, that I burst into tears and his mouth gaped open.  I blubbered out loud, “But I have Multiple Sclerosis.  I can’t help that I walk like this.”  It was his turn to be stunned and he took off his hat and bowed his head.  He put his hat back on, took my hand and put it on his arm. He said, “Where are you going? May I escort you?”

I sniffled and said, “As it so happens, I was heading home. I just taught a class at Pins and Needles, a high-brow knit store where yarns are so expensive it’s cheaper to buy a sweater already made.”

He smiled and said, “This is Princeton and everything is like that.” Then he looked at me again and smiled, “You teach?  Is it difficult to teach with your condition?”  I told him that I had the students come to me and everyone was so kind and respectful of me.

We chatted like this all the way home. He guided me up the stairs and he finally said with hat in hand again, “I apologize.  This was a good lesson for me.  I shouldn’t have assumed what I did. I shouldn’t assume anything about people I don’t know.”  I just nodded and offered to give him a cup of coffee, but he had to go.

My Take On This:

Sometimes I notice people looking at me.  I no longer live Princeton, but just outside of it.  However, it seems that people are the same everywhere when it comes to looking at someone who is either very attractive or somewhat different. I am guilty of the same behavior.

I used to worry about what people thought of me even when I was “normal.”  I no longer waste my time on what I consider is frivolous worrying.  This is part of the benefits of getting older and it’s also part of the benefit of having a disabling disease.  

This is why I say that in many ways, we are enabled by our disease.  With the loss of something we gain other things.  I think, for me, I gain wisdom in knowing and understanding that I have better things to do than to waste my time worrying about what is on the minds of other people.  They will think what they will, but their thinking, has absolutely no impact on my life.