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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ENABLE YOURSELF

I read your comment with interest.

It takes most people a very long time to get a diagnosis of MS.  It did me.  What’s interesting is this, what they call normal MRIs can, in fact, be abnormal ones.  It depends on who is reading them.

Have you told your testers that you want a copy of your MRI results sent to you?  I would also ask to receive a copy of the actual films, which you can get on CDs now.  I always get copies of everything from every doctor I go see.  This way, if you go see a Doctor, new or old, and they don’t have a copy of the film or the reports, you can bring yours and allow them to copy it.  Don’t ever just give it to them.  Make sure you get it back.

I used to compare my MRI films with those I found online.

The thing is, as we age, we all get lesions in our brains.  It’s the preponderance of lesions in certain areas of the brain, whether they enhance or not, OVER TIME, that eventually leads to a diagnosis of MS.  Or, if you have the right Doctor, it can also be given as a diagnosis when everything else has been ruled out.

Are you seeing a neurologist?  I hope so.  If you find a nice one, stick to them.  They will be your most helpful doctors.

I’m sorry for your anxiety over the lack of a diagnosis.  We all know what that is like.  Most of us had to wait a long time with the same results, the questions on friends and family faces.  They too start to question you.

As far as your friend on that trip, she probably did not realize how bad off you were until she spent a lot of time with you.  Sad to say, her reaction to you is quite typical of people.  Those people who reject you can be handled in one of two ways.  You can try to educate them or you can just push on and leave them behind.  By doing either one of these things, you have taken control of the situation instead of allowing the situation to take control of you and your feelings.  I believe in this case, I would just push on.  If she contacts you then that’s lovely.  If she doesn’t contact you, that’s okay as well.  Expect more of that and then you won’t be surprised or hurt.  It is the arming of yourself with knowing what happens that protects you from debilitating emotional wounds that people can inflict upon you.

Read MS Life in reverse.  Go to the earliest date and watch the progression.  You will learn a lot in here.  Comment and “like” along the way.  It helps the blog.  Also “Follow” the blog and you will receive your blog in your email.

We are here for each other.  There is no need to feel alone.  In the face of adversity, find people who are of “like” mind.  This way you become a part of a community.  It’s helpful.  Be careful where you hang out.  You don’t want to be in groups where the talk is mostly negative.  You want uplifting sites.  There is enough negativity going around.

Pity parties are okay but it gets lonely at a party where no one else wants to go.  Have your party and then leave.

My site’s byline is called “Enabled by Disability”.  Focus on what you can do instead of what you can’t do.  There is much to be done in your life, particularly since you are still young.  Recognize the good when it comes along, not the bad.  Learn to develop a protective shell around you.  Reach out but don’t be surprised if your hands are slapped away at times.  That’s okay if it happens.  It only means that they are not to be a part of your life.

Think of your disabilities as a rebirth.  An ability to rebuild your life using new tools.  Not many people are faced with what you are faced with but see it as an opportunity.  Wake up and take small steps in moving forward.

I always tell people, “If you know you have MS despite what the tests reveal, then you probably do, or even some other form of neurological disease that mimics MS.  Stop waiting for a diagnosis and live your live to its fullest despite having a neurological disease.”

In ending, I would like to use your comment as part of an E-Book that I am writing.  There is no compensation for it, but if you want, you will be added as a contributor to the book.  I won’t specify how you contributed so that people can’t pin that comment to you.  The other thing is that I can use your initials as the commentator without being a contributor to the book.  Either is fine.

If you would allow this, then I will have you sign a release form so that there is no legal problem in the future, not that I would expect there would be.

Thank you for your comment and I hope this helps.

Magdalena

 

Life in the New Year!

cutting-looseAh, the new year is upon us.  Should we celebrate it or not?

It looms before me and if it was anything like last year, I think I’ll press the reset button on my life and hope it takes me back to before last year began.  Six surgeries!  I almost tremble at the thought of what this year might bring.

Actually, now that I think about it, I don’t fear the new year.  I anticipate it just like I anticipate anything new.  It’s like a Christmas gift that one gets where you open the package slowly in anticipation of what it might prove to be.

Just like Multiple Sclerosis.  You just don’t know what the year will be like, but isn’t hat true of anything?    Rather than fear the new year, I think I will embrace it as it unfolds, like a lover where you run kisses up and down his face until you get the reaction you want.  LOL.

I’m sitting here thinking, bring it on! I know I can handle anything this new year will bring me.  Perhaps I will get lucky and face only great things.  Maybe I won’t be so lucky and have a predominantly difficult year.  That’s okay too.  I’ve proven that I can handle many things that I thought I couldn’t.

Add to all the physical problems were the emotional ones to do with family.  It was a traumatic year for my family which of course, rolled on to me.  When they hurt, I hurt. When I hurt, they don’t.  Seems a bit uneven doesn’t it?  I don’t care.  It is what it is.  Their pain is mine, at least it affects me as though it happened to me physically.

The ambiguity of life is common to all living things.  None of us knows what will happen to us even within the scope of my favorite five minutes, the one that is happening right now. For instance, I spill this cup of coffee all over my computer keyboard and in the process I burn my hand.  I don’t care about the hand.  I grab something to wipe the keyboard down with or flip it upside down hoping I caught it in time so that the coffee didn’t have the chance to drip down between the keys.  Dream on.  I’ve never been that lucky.  I move way too slow to catch it in time.

This leads to a ruined keyboard.  I can’t get through a day without a keyboard since I’m primarily a desktop user.  What to do?  I could order one online, but I would have to wait a day or two, if not longer, to get a keyboard in the house.  I could use my husband’s keyboard, but then he’d be without his and he works on his computer daily like I do.  I don’t like it when my battles seep into his daily life, although we all know it does. However, this is something I can do something about.  Let his computer alone and deal with my own problem.

This then leads to, should I buy one sight unseen or should I go down to a store?  The last one  I bought was sight  unseen.  It turned out to be a nice keyboard, as keyboards go. Should I get the same one?  Nah.  Things change during the course of a year.  Technology changes and I’m addicted to the latest and greatest.  Going out to check out the keyboards has a two-fold advantage.  I get out of the house, and of course, I get to check out the latest and greatest.

I find my old keyboard and compare it to the newer keyboards.  They vary in price and in function.  To wired or go wireless?  To go with a mouse included or not?  You get the idea. One event sets off a series of other events.  Should I look ahead and plan for every possible outcome or should I deal with what is happening right in front of me right now?

I can’t sit around and worry about every possible outcome while my keyboard is getting ruined and everything else that is in the way of the path of spilled coffee.  I need to take action right now for what is happening right now.  I need to mop up the spilled milk, then assess my wet keyboard and so forth.  If I take things sequentially and logically, I can deal with it one step at a time.  If I think about it and weight all the possible things I can do, in the meantime, what started out as a bad event grows into a destructive event instead of a minor one.

Okay, so all this leads me to think this about the new year.  Not to worry.  Not to fear.  Not even to plan.  Planning assumes too many things which turns into worries.

I don’t make resolutions because I have too much respect for myself to set myself up for failure.  If I do well with something I would like to improve, this is good.  I think that most things that need improvement will take more than one year to take effect.

I will go my merry way, as merry as I can be, that is.  One step forward leads to another step forward and eventual destination.  Along the way, there will definitely be falls, perhaps some broken bones along with tears of consternation, anger, sadness.  This is the story of life.

All of us can lead a life of being disabled or we can choose a life of being enabled.  My disabilities does not disable me nor does it define me.  My ATTITUDE is what can disable me.

You choose for yourself.

I am enabled by my disability.