Mr. Sandman

images (1)The sandman came today.  He knocked on my door last night and dummy me, I let him in.  Mr. Sandman did not take any hints from me letting him know he had overstayed his welcome.

I sleep maybe two hours at a time any given night.  Most of the time, I just get up and find something to do.  I require little sleep to function.  At least that’s what I believe.  My doctor’s don’t agree.

I’m wondering right now what Mr. Sandman does when I fall asleep.  Does he sit there watching me rest?  I had to question this today because when I woke up from my normal two hours of sleep, he was still here.  I thought I had made it clear to him that it was time to go home.  I went to the bathroom and came back to my office chair.

Oh, I forgot to tell you.  When Mr. Sandman came, I was in my office.  I fell asleep there while sitting in my chair.  When I got back to my chair intending to work (trading), Mr. Sandman was insistent on making his presence known and before I knew it, I fell asleep again until about 7:30 am.  I couldn’t believe it!

Mr. Sandman wasn’t around when I woke up the second time.  Good riddance.  He is not like my Man in The Moon.  I referenced him in an earlier blog.  The Man in the Moon can come over any time he wishes.  He is always welcome here.  Mr. Sandman is a different story.

I don’t know why I’m so averse to having him around.  Perhaps it’s because he steals the time away from me and The Man in the Moon.  Perhaps he is jealous?  I can tell you this much.  We don’t get along at all.  In fact, every time he appears, I tend to fall asleep.

Now here is what vexes me.  The Man in the Moon hung around with Mr. Shadow all day long.  You know Mr. Shadow who seems to follow me around unless he is standing in front of me from a different view, wanting to make his presence known.  I’m accustomed to Mr. Shadow.  Mr. Sandman doesn’t make himself known all the time.  His presence comes and goes into the night or sometimes during the day, however; I can always sense him around me.  He exhausts me with his persistence.

Getting back to reality, I slept most of the day in addition to what I slept last night.  I think it’s my body’s way of catching up for all the lost hours of sleep that I need.  Maybe it’s just the fatigue that we get with Multiple Sclerosis.

images (3)My Take On This:

There is no fighting this sleep.  It takes over completely.  It doesn’t matter if I’m cooking or washing the dishes.  I literally will fall asleep standing by the sink or by the stove standing up.  Dangerous?  Yes.  I should acquiesce to the state I’m in and do nothing, but I feel such a sense of responsibility to cook the bacon that is brought home by my husband who brings home the bacon.

This relentless need for sleep is different than the narcolepsy I experience.  I can’t control the narcolepsy either but it’s for a few seconds at a time.  This need for sleep happens for hours at a time when I nod off.  I never know how long it will last.  I do fight it but I always lose.

This is nothing to lose sleep over.


lonely2There are days that I hate.  Today is one of them.

What makes certain days intolerable in my life with Multiple Sclerosis?  It’s a day where I’ve gotten up, showered and dressed, put on makeup and did my hair, and when done; I have nowhere to go and nothing to do.

It’s so hot!  I’ve already talked about heat intolerance, but that’s not what this is about.  This is about, almost without thought, the awakening of my spirit to the outside world and wanting to be a part of it.  I get up and do what any normal person would do–get ready for the day.  The problem is, there is no day waiting for me.

I’ve gone about my day doing daily tasks, taking care of the dogs, and working on my computer.  I fell asleep during my lunch, woke up then finished my lunch.

I went into my office to check on a trade that I had placed in Forex earlier in the day and saw that it was in a sideways movement, not going anywhere, so I closed the trade down with pennies for profit.  I too am going sideways, going nowhere.

The high point of my day was when the mailman brought a box to my door from

I’m not sad.  I’m frustrated and bored.  I’m also lonely.

I’m very lonely.lonely



I Am A Fallen Leaf


I am a leaf laying on the ground beneath a luxurious maple tree, the branches hanging over me like a protective barrier in hues of various stages of brilliant golds and reds.  It is shedding its leaves baring its branches and in a matter of a few more weeks or even days, it will stand naked before the eyes of whoever passes by.

Some of the maple tree’s branches reach up above the houses while others stretch wide, and still, others hover towards the ground as though trying to capture the leaves on the ground to cover itself up with.

I am sitting here this morning trying to accomplish something, anything, but the more I try to get things straight in my head, the more my thoughts scatter around like leaves blowing around in a fall wind.

I cannot think this morning.  I recognize this state of mind and all I can do is acquiesce to the meanderings of my thoughts.  As I often do through my fingers, I am writing to see if somehow through the written word, I can line up my thoughts so that I can get something done today.

As I sit here and read the last sentence that I wrote, I realize that this is pointless.  I can’t line up my thoughts no more than I can line up the fallen leaves of the maple tree.  The only thing I can do is allow my thoughts to scatter around in a dance of pure joy.  I need to give in to this state of mind and make beautiful things through my fingers.  After all, there are no rules in a disembodied brain.


burningsunIt is so hot today, and It’s been hot all last week.  It looks like this week will be the same.  Heat is not good for people with Multiple Sclerosis, who have to deal with heat intolerance.

I copied this from the site, Brain Blogger.

“Increase in temperature worsens the symptoms of MS
Most of the symptoms of MS are due to the impaired nerve impulse conduction and with an increase in temperature the symptoms worsen in the affected people. Among the various symptoms of MS, fatigue, limb weakness, visual problems, pain and numbness and cognitive dysfunctions are commonly exacerbated when the core body temperature increases.”

I went out today to run some errands with my husband.  I had four places to go on my list. All would be very short stops since I knew precisely what I wanted.  After the second stop, I told my husband we were going to skip one place.

The air was laying down on me like a lover pressing down into me.  This lover was not giving me pleasure but a sense of wanting to throw him out of my bed.

At the second stop, I could feel my legs turn to rubber as I maneuvered my way up the curb and into the store hanging on to my cane as though it was the third leg. We do need this third leg.  Without it, it’s as though someone has taken out two of our legs instead of one. We turn into a puddle of helplessness laying on the ground while people walk around us trying to avoid getting wet.

I sit here with heavy-lidded eyes wanting to finish a project for a dear friend. Instead, I sit here trying to see the screen and wishing there weren’t two of everything, making it difficult to spell.  When I came in the door, I headed straight for the first chair I saw, and it happened to be my office chair.  The table on which my projects waits is maybe 10 feet from me but feels like it’s a mile or more away.
all dayjpgI hate what heat does to me.  I was at a garage sale last weekend, and I turned beet red so that everyone was concerned for me.  The sun turned into something ugly just beating down on me.  I felt singled out by it.  I sat down, and people ran to get me something to drink.  I didn’t have to complain about anything because my face was a dead giveaway.  I don’t like that either.  I prefer to keep my misery close to my chest.

My spin on this:
  1. I got dressed and even though I didn’t feel like doing so, I did so that I could run my errands.
  2. I ran most of my errands which provide me the ability to finish a project or two.
  3. I have the items I need to make dinner.
  4. I did it!
On the downside, there is only one item.  I’m too fricking tired to do anything with anything.
Inside of me, although you can’t tell, I’m jumping up and down and saying, “Good girl. You did everything you set out to do.  I’m proud of you.”  I say this to myself because no one is around to congratulate me.  No one understands what it took for me to do it and what it will take for me to finish what I started including making dinner.
I don’t say this to get people to say, “Oh you poor thing.  If I were there, I would congratulate you.” This is the sort of canned response I get when I complain about how difficult something is or when I speak about the lack of support I get.
I’m here to tell all of you, get over it.  Stop looking for people to give you what you need in the verbal sense.  With or without a disease, you will seldom get anyone to recognize that the little things you do, can sometimes be an enormous challenge.  Don’t expect to hear the roar of the crowd with a standing ovation.  Don’t wait to hear thundering applause and whistles of appreciation.
You do it for you.  That’s what matters.  That’s how you love you and when you do love you, you are willing to do an encore presentation.
For now!  I tell the crowd, (if there was a crowd in my life), “Get the frick away from me!”
I have just now kicked the sun out of my bed so that I can breathe again.


Love What I See

blinded_by_fra01000110-d38aphxThings are very blurry today.  Just another day in the life of a person with Multiple Sclerosis.  This is not unusual for people with MS.  In fact, for many of us, this is our first symptom.  There is usually a deep pain behind the eyes along with visual problems.

I take my glasses off.  I put them back on again.  I peek over the top of my glasses.  Then I pull them up so that I can look at a different part of my trifocals.  Nothing works.  The best way to see is without the glasses altogether.  This will pass in a day or two–I hope.

My vision became wacky yesterday while I was visiting a friend of mine.  There we were talking and I kept seeing two of her.  I didn’t know where to look and wondered if she noticed my eyes bouncing around trying to focus on the right person who sat just a few feet away from.

I gave her an exciting visit besides the dance of the jiggling eyes.  We were about to step out back.  She was in front of me opening the sliding door and I behind her, as a sequel to the dance of the jiggling eyes, I decided to drop and dance down on the floor knocking over her coffee table.

I laid on the floor quietly trying to assess any damage.  My baby finger on my left hand was throbbing like crazy but other than that, everything seemed to be okay.  I’m almost certain that finger is broken.  I’ve had it wrapped for about 24 hours or more and it’s not improving.  So I’m headed to a Doctor’s office to see if they can wrap it properly.

Everyone needs a friend like I have.  She sat there quietly.  She asked me if she could look at my head.  She was certain I hit the back of my head.  I had not hit my head.  She looked so worried that all I could do to allay her fears was to smile and tell  her everything was fine.  I did admit to my finger hurting.  She went hunting for bandages, came back with a box of band-aids  and taped my baby finger to my ring finger.  That made it feel better immediately although the throbbing continued.  Yes, we all need and deserve a friend like mine.

I don’t know what caused this fall.  I was standing one minute and the next, I was on the floor.  Although I hate the loneliness of being inside my house almost 24/7, I admit that I’m rather afraid of going out for fear of things happening like this.

Now if I could see clearly, I would feel better as well.

Sometimes, when people are not demonstrative, you can still see the love and compassion in their eyes.  Since most people I know do not verbalize very well, it’s the seeing that becomes my strength through them.  Seeing is important for me.

My Take on This:

We had a great time!  Friendship and love is worth every topsy turvy fall any day.  

I Am No Dragon Slayer

dragonI bet you’ve been wondering where I’ve been.  Well–I’ve been at the hospital trying to slay dragons.  Unfortunately, the dragons have temporarily chased me away with their fire.  However, I have restorative powers of my own.  They are not available at the moment.  I know they are there and I will call them forth when I really truly need them. This problem has nothing to do with Multiple Sclerosis.  It has an impact on the symptoms only.

I have been on the receiving end of a Doctor who is now no longer a Doctor.  He took me and made me no longer me as well.  This Doctor operated on me four times for hernia repairs.  You know, those things that bulge out of your tummy.  It seems that at least one of those times, there was a partial strangulation of bowel.  At least he was smart enough to send me for an MRI which told him what to look for.  He did not send me for tests on the other three.

I knew that I had a hernia once.  I was not made to know, by my tummy, that there were other things hanging out to chit-chat because they were worried about getting strangled.  I would hang out too.  He discovered these hernias on followup visits from the last hernia repair.  I became paranoid about seeing this Doctor.  Come on already!  These were followup visits!  This means they were six weeks after surgery!  Before I knew it, I was scheduled for yet another surgery.

This past year, I learned from one Doctor that my surgical Doctor had his license revoked. The Doctor who told me this told me to look it up.  I did.  To my utter amazement, I found out that my Doctor had been in rehab for an addiction to coke.  The hospital knew about it and felt that as long as he was in rehab, they had nothing to worry about.  Little did they know that he was writing prescriptions for drugs to people who then sold those drugs, pill by pill, at a much higher price than the entire bottle cost.  This was in part, how my Doctor traded his prescriptions for coke.  There were other things he did but I won’t go into it here.

I started to think about it and wondered if I actually had those hernias.  I was told that I could sue.  I’m not a suing sort of person so I waited.  Then I started having trouble with a hernia that was in the exact location of the hernia that I had before.  The one I knew I had. Come to find out, he never took care of it.

The story goes on and on.  He had his demons to slay.  What a waste.  He was the head of the surgical department at this hospital and now look at him.  It’s a shame really.  I’m looking at it from both sides.

For those with us with Multiple Sclerosis, my neurologist told me that it takes 6 to 8 months before you return to presurgical state.  Surgery aggravates the symptoms and relapses you into hard-core MS state from which you gradually recover.  I was getting surgery after surgery and now guess what?   I need another surgery to repair what he didn’t but this time, I must have a second surgeon involved because the hernia is so large that it distends my stomach on the side right underneath my right breast.  It looks like I have a third breast!

I recant what I said in the first paragraph where I said it has nothing to do with Multiple Sclerosis.  It does.  It impacts it.  Misery hangs over me like a cloud at times.  It is one thing or another that has made these last few years so difficult.

My Take On This:

I know that  people often wonder,  how bad could all this be?  Look at her.  She is always smiling.  

This is true.  I do smile.  Why?  A smile is curative.  Laughter is even better.  What is the point in going around picking up a shovel to dig a hole where I can place one foot in it in preparation for death?  I don’t want to die yet.  I still have a lot to do, places to go, people to see, fences to mend, and lots of joy and laughter to share.

I don’t want to be remembered where people say, “Well she’s in heaven now.  All her pain has ended.”  No that’s not for me.  I want to be remembered as someone who kept on living the life she was given instead of the life she longed to have.

I also feel that by example, I leave a message behind.  That life is worth the effort it takes to have a good one.  I also feel that I was given this life to teach others how to handle a difficult life not only with having the disease of MS and Dystonia, but in dealing with the additional problems that crop up on the way to heaven, or at least to a peaceful and needed rest.

dragon2My take on this is despite the dragons that come my way who brutally attack me, yes; I may succumb for awhile due to lack of strength but not because of lack of fortitude.  I am a fighter and I also believe that these things have something to teach me.  I learn from this and that.  I am no dragon slayer, but I am a fire-breathing dragon survivor.




That’s What It Is!

34-social-media-truths-in-a-nut-shell-50-728I came to the realization today that I’ve had an utterly unproductive week this past week.  I didn’t write, I didn’t produce any music, and I barely looked at my oil painting that I’m working on.  What gives?

I was caught up with trading this week.  A lot happening there.  We received some worrisome family news.  Something to worry about there and continues to be worrisome.  Still these things don’t explain it.

Wait a minute.  I have been doing some gardening.  I can at least say that.  What little I can do.  Come to think of it, perhaps I know what this is about.

Okay so we all know I have Multiple Sclerosis however I have several other problems to keep my MS company.  MS doesn’t like to hang around by itself, or so it seems for me.  My MS likes company to keep it warm and fuzzy at night.

I don’t want this blog to be about aches and pains and focusing on the negatives, but what can I say, there is nothing positive about having a shadow of MS hanging around all the time, 24/7.  You want to run away from it, from your body but true to form, MS wanting companionship would more than likely chase after me.

Yep, I’m not feeling well.  There’s more to it than that and it’s nothing to do with MS so I won’t go into the details of it here.  However, it does exacerbate the overall health of an MS patient who is already beleaguered with a myriad of symptoms with no relief in sight.  When something else comes along to join the party, everyone is having fun except me.

That’s what it is!