On Maggie’s Pond

I’m sitting here noticing that I need to clean my keyboard.  I can do that!  I focus on what I can do and not on what I can’t do.  If I sat around bemoaning all the things that I can’t do, just give me a shovel so that I can dig a hole six feet deep that I can crawl into.  Only problem would be is how would I get the dirt filled up after I’m in the hole.  That I can’t do.

Living with Multiple Sclerosis is not a death sentence.  It is not something to despair over.  It can lead to a shorter life depending on the type of MS one has, and actually; it may lead to a shorter life for those with other variables of MS, but not by much.

What is significant about MS/Multiple Sclerosis, is all the things we can’t do as time goes by.  You don’t get a diagnosis of MS and all of a sudden you are bedridden or significantly impacted in an obvious way.  Many people have MS and still work.  Many people, inclusive of those I know; you would never be able to tell they have the disease.  Many people, including myself, have advanced into severity but still go on taking care of the house and other activities like yard work, etc.

Let me show you an example.

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I started this pond last year.  My husband dug out the slate for me and put them in piles around the hole that I dug.  My husband helped define the hole for me.

This was my baby.  It was something I wanted to do on my own so that I could feel a sense of accomplishment.  It was something I could do.  It took me nearly two years to do it, but I did it.  I carried each one of those rocks from one part of our very large yard to the pond.  Along the way, there were things I couldn’t do, and I gladly turned it over to my husband.  Although he was very concerned about my falling, which I did often, he left me alone when I wanted to do it alone.  He did put his foot down a few times and insisted I come into the house but he balanced his concern with my determination to do this.

It wasn’t easy.  It took forever and many small steps to carry stones.  I couldn’t use a big cart so I piled rocks into my shirt and carried them that way across the yard.  I averaged about three trips in an hour and the rest of the time, I laid the rocks into position.  I still have a ton of rocks to go, but at least it looks like a pond.

There were many falls, one where I had to lay there a couple of hours before help came along.  It was okay.  I turned over on my back, watched the clouds and made up a melody in my head.  When I was asked how long I had been laying there, I white lied.  What would be the point in worrying anyone when I was hurting?  The hurt did not come from the fall but from my legs, which started last year.

At that time I thought that perhaps my legs hurt because I wasn’t doing enough on my legs.  I wanted to work them out.  It didn’t work.

I focused not on building the pond, but on picking up a rock, putting it in my shirt, then picking up the next rock, and so forth.  Then I focused on the long walk back to the pond, or at least it seemed like a couple of miles.

The pond was the ultimate goal but the pond gets built by a lot of small steps.  I focused on those small steps and broke those small steps even further.  I landed up with mini steps.  Those I could do even if it took me all day to do what someone else could do in one hour.

This past weekend, I was like a child excited about going to a candy store.  We went to the pond store where I purchased six Koi fish.  I tried fish last year, but the pond’s habitat wasn’t mature enough.  I waited a lot longer before I finally deemed the pond habitable for fish.

My Take on This

Multiple Sclerosis is a disease that when you first hear the diagnosis your head spins with envisioning the changes that will happen in your life.  Yes, they are disturbing and yes, it seems calamitous.  It leads, for many of us, to debilitating lifestyle changes…gradually unless you Progressive MS.

I’ve had MS for 30 years, if not longer.  I still work around the house and in my yard.  I still walk with a cane or walker.  I am using my wheelchair a lot more frequently these days.  I have more than likely moved into progressive but I’m not asking if I have.  I don’t care to know.  It’s enough knowing that I have Congestive Heart Failure now.  That is something to worry about.  I’m trying not to.  The prognosis for that is about five to ten years, but my internist said he knows of some who have lived longer.

If one thing doesn’t get you, something else will.  It’s the nature of life.  We all die.  

It’s how we live that’s important.  It’s what we leave behind that counts.  We live on with the memories we gift people.  I concentrate on quality not quantity.  I concentrate on embracing the difficulties of the day not on defending myself from those difficulties.

Multiple Sclerosis is not a death sentence.  It is just one of those incredibly difficult and painful things that some of us are burdened with.  

I want to leave this blog behind as my gift to the MS world.  It is concise, brutally honest, happy, sad, uplifting, and depressing.  It is the whole of what MS is in “my” life.  It’s different for everyone.  In the long run, I want readers to feel that they have gained a lot of information (not the technical stuff), about what life is for one person with MS.  

My motto is “MS does not define me.  I define what MS is in my life.”

 

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The Day Multiple Sclerosis Overpowered The Microwave.

indomitable-spirit

My microwave needed cleaning.  I couldn’t see how bad it was except from the perspective of a short person (4’10”), but when removing items from the microwave, of late, I detected the pull of stickiness.

Okay I hear you….”Wait, you have Multiple Sclerosis.  Don’t even think about it!”

I knew I couldn’t reach up there far enough to clean it so I stood there and thought about it a second.  I have two different size stools from many years ago.  I don’t know why I cart them around because I shouldn’t use them, but I was glad I had them now.  I pulled both of the stools over to the microwave.

After arming myself with supplies, I put them on the counter where I could reach them. Then I stood there and studied the stools.  One stool was just one step and the other was two steps.  Logically, I thought I would start off with the one step.

I went over to the stool and tried to figure out how best to get on it.  It didn’t have grab bars so I would have to rely on myself or hang on to the stove or counter top.  The problem was, is that there was nothing to pull myself up with.  I couldn’t just hop on under my own power.

I tried to get one foot onto the stool.  My leg wouldn’t go as high as the step.  I tried again, this time pulling on my pant leg to help it up.  After several tries, I got it up there.  There I stood with one leg up on the stool and huge question mark on me.images

Now what?

I’m not able to push up like most people.  My neurological deficits affect many areas of my body including my ability to walk well and my overall strength.

I looked at the counter and the stove.  Could there be something I could grab onto to pull myself up instead of standing there like a child faced with an enormous decision?  To me, nothing truer could be said.  I was a lost child trying to figure out how to get from point A to point B.

I finally noticed the overhang of the counter and the handle of the oven door.  I opted for the overhang of the counters, thinking this is the safer option.  I hung on to the edge of the counter with my fingertips and SUCCESS, I had my other leg up.

I positioned myself and attacked the inside of my microwave with zest. Finally, after 15 minutes of cleaning frenzy, my microwave beamed like a brand new one.

imagesNow how to get down?

I started to shake.  In my effort to clean my microwave, I did not notice the weakness in my legs until I was done.  Contributing to the shaking legs factor, was my fear of falling down in getting off the stool.  Don’t get me wrong, I was damn proud of myself for having accomplished what I had set out to do, but I often leap then look when I make decisions based on my absolute need to get something done.

I looked down at the floor which seemed about a mile down.  I truly was terrified and having shaking legs was not helping me at all.  Would my fingertips hanging onto the counter be enough to balance a light landing, or would I come crashing down?  Well, I couldn’t just stand there all day shaking, now could I?

I held on to the counter as tight as I could and hoped for the best.  I couldn’t see where the floor was in my position so it had to be a blind faith jump down.  I reached down with my left leg and tried to feel the floor.  That would have been too simple.  Of course, I couldn’t feel the floor!  I had to bend down on my right knee to reach further down.  Luckily, my right knee was stronger than my left.

I broke out in a sweat as though I was climbing back down Mount Everest instead of a tiny stool.  Bending down on my right knee, I finally felt the floor with my left foot.  My fingertips that were hanging on to the overhang, let go without my permission and down I went with a jar.

I didn’t care that I came down with a thud.  I did it!  I cleaned my microwave.  I would have danced a jig if I could have.  Instead, I happily but very slowly walked over to my recliner in the family room and sat down.

My Take On This:

This was huge!  I didn’t know that I could do this.  I wouldn’t do this today, as this event happened a while ago, however; it still is huge in my mind.

What I did was irresponsibly dangerous.  I could have taken a fall and with being alone in the house, I may not have made it to a phone.  (Yes I know, I should get one of those push button call for help thingy, but they advertise it with old folks crying for help. I did not want to categorize myself as a person like that.)

In looking back at this, I still am damn proud of it.  In fact, it’s rather humorous.  It’s rather poignant that I look at this as a big event still.  It’s these tiny things that I do, that loom so large in my life, that gives me the power I need to continue to think positive about this disabling disease, Multiple Sclerosis.