I Smile

Something I haven’t talked about is what’s life like these days.  I’m not talking about the medical stuff here, but life!  Day-to-day life which is what the blog is all about.  I’ve been so concentrated on the pain issue that I haven’t talked about anything else.

I dare anyone to blame me for this.

Here is a weird thing.  I decided to buy a 2017 Fiat 500.  Why?  I seldom drive anywhere.  I’m heavily medicated most of the time.  I can’t see worth anything especially at night.  I don’t have deep pockets of money to spend anywhere.  You can’t haul medical equipment in the car.  The trunk is too small.  You can’t even haul passengers in the car unless they are munchkins with teeny tiny legs.  I can’t lift my right leg to get into the car.  Surprisingly, the front seat of the Fiat is higher than your average car.  So what I have do is this.  I found a leg raiser thing-a-ma-jig at a medical supply store.  It looks like a loop on a long wired handle.  You place your foot in it and pull on it with your arms.  It raises your foot up, almost high enough to the level of the Fiat.  It works well enough.

My life is spent running from one Doctor’s office to another.  It’s the highlight of my life.  I get to get dressed in something better than I normally do.  I put on a wig since my hair is shot, and some makeup.  I look okay for the day.  Lastly, I put on my smile that everyone seems to love.  As long as I’m smiling, the world thinks everything is okay with me.

I have cleaners come in every two weeks.  Will hope to move them up to every week when things get better financially.  I’m in the market for a new wheelchair that medicare approves of.    I spend a lot of time researching this.  Have you seen what’s out there?  Unbelievable!!!  One costs as high as $14,000.  Which is, of course, the one I fell in love with.  Anyone care to make a donation?

My Take On This

 All is well with the world around me as long as when they see me, I am smiling.  There is no such thing as showing a face of pain.  If you do, they compare their pain to yours!  At first, early in the disease, I tried to educate people.  I no longer have the desire to do so on a daily basis.  Hence, the reason for the book.

I’ve reached a point in my Multiple Sclerosis where things are sliding downwards and fast.  I fought wheelchairs, but now I spend my nights prowling through websites and watching videos on all that is out there, dying to get my hands on one that works.  

I watch my life changing almost daily and dramatically.  There’s nothing I can do about it.  There is only one thing to do.

I smile.  It makes the people around me feel better and believe it or not, it eventually makes me feel better.

 

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Get the F’ Out of My House!

It was such sunny and bright day yesterday, as I stood at the doorway of the back door watching m puppies at play.  I decided to get dressed while they were out romping around in the hint of spring weather.

I painfully made my way to the bedroom with my constant companions, pain and my walker.  I stood before the open dresser drawer trying to decide what to wear.  It was easy, most of the time because predominantly, in my drawer were black pants.  Today, however; I felt like wearing something different.  I chose a pair of pants the color of coffee with cream.  I then chose a red  top.

I went here and there, picking up things and setting the rooms aright.  My cleaning service ladies should be arriving soon.  It’s funny how one does this just before the before the cleaning people come.

While doing this, I felt my energy slowly slipping away as though my efforts were like attempting to start a car that wouldn’t start.  You turn the ignition and the feeble sound of the car battery lets you know that if you don’t start it soon, you won’t be able to start t at all.

Finally, I made it to the kitchen and stood there looking around.  I could see some things to be set aright, but they seemed daunting to me, as though moving some dirty dishes from the counter to the dish washer would succeed in only grinding the engine of the car (my body) to a screeching halt.

I gratefully let the cleaning ladies in shortly thereafter and slumped in my chair in front of the computer.  What I really wanted to do was get undressed and crawl back into bed.

I have very cheerful cleaning ladies and the loud talk, music and the repeated, “How are you Miss Maggie?” was sweet but just too much both at the same time.  I couldn’t wait for them to leave.

While I dawdled at the computer, I mean who could do anything constructive with all the noise here, I realized I needed to pee.  I could easily make my way to the bathroom and chase the ladies in there out, which I’ve done before.  I stood up about to do that very thing when I felt it let go.  There I was standing by my chair peeing (luckily, I had protection on) and trying to smile at the cleaning lady that just popped into the room.  “Is there anything I can do for you Miss Maggie?”  I smiled and said,

“No, I’m okay.”  I quickly turned around and sat back in my chair.

What I really wanted to say was, get the fuck out of my house!

My Take On This

It’s typical for all people with Multiple Sclerosis and many other diseases to start off the day chipper and ready to go (some days).  As the day passes, or rather the hours or minutes, you find yourself slowly losing the energy you started off with.  If you’re trying to maintain the momentum, forget it.  It’s like trying to catch a fish in a pond.   It just takes too much energy to hold on to the energy.

As far as my wanting my dear sweet cleaning ladies out of the house?  Aw come on!  When you’re peeing in your pants about the last thing you want is a house full of cheerful people who keep asking you questions.

 

 

I went here and there, picking up things and setting the rooms aright.  My cleaning service ladies should be arriving soon.  It’s funny how one does this just before the before the cleaning people come.

While doing this, I felt my energy slowly slipping away as though my efforts were like attempting to start a car that wouldn’t start.  You turn the ignition and the feeble sound of the car battery lets you know that if you don’t start it soon, you won’t be able to start t at all.

Finally, I made it to the kitchen and stood there looking around.  I could see some things to be set aright, but they seemed daunting to me, as though moving some dirty dishes from the counter to the dish washer would succeed in only grinding the engine of the car (my body) to a screeching halt.

I gratefully let the cleaning ladies in shortly thereafter and slumped in my chair in front of the computer.  What I really wanted to do was get undressed and crawl back into bed.

I have very cheerful cleaning ladies and the loud talk, music and the repeated, “How are you Miss Maggie?” was sweet but just too much both at the same time.  I couldn’t wait for them to leave.

While I dawdled at the computer, I mean who could do anything constructive with all the noise here, I realized I needed to pee.  I could easily make my way to the bathroom and chase the ladies in there out, which I’ve done before.  I stood up about to do that very thing when I felt it let go.  There I was standing by my chair peeing (luckily, I had protection on) and trying to smile at the cleaning lady that just popped into the room.  “Is there anything I can do for you Miss Maggie?”  I smiled and said,

“No, I’m okay.”  I quickly turned around and sat back in my chair.

What I really wanted to say was, get the fuck out of my house!

 

I went here and there, picking up things and setting the rooms aright.  My cleaning service ladies should be arriving soon.  It’s funny how one does this just before the before the cleaning people come.

While doing this, I felt my energy slowly slipping away as though my efforts were like attempting to start a car that wouldn’t start.  You turn the ignition and the feeble sound of the car battery lets you know that if you don’t start it soon, you won’t be able to start t at all.

Finally, I made it to the kitchen and stood there looking around.  I could see some things to be set aright, but they seemed daunting to me, as though moving some dirty dishes from the counter to the dish washer would succeed in only grinding the engine of the car (my body) to a screeching halt.

I gratefully let the cleaning ladies in shortly thereafter and slumped in my chair in front of the computer.  What I really wanted to do was get undressed and crawl back into bed.

I have very cheerful cleaning ladies and the loud talk, music and the repeated, “How are you Miss Maggie?” was sweet but just too much both at the same time.  I couldn’t wait for them to leave.

While I dawdled at the computer, I mean who could do anything constructive with all the noise here, I realized I needed to pee.  I could easily make my way to the bathroom and chase the ladies in there out, which I’ve done before.  I stood up about to do that very thing when I felt it let go.  There I was standing by my chair peeing (luckily, I had protection on) and trying to smile at the cleaning lady that just popped into the room.  “Is there anything I can do for you Miss Maggie?”  I smiled and said,

“No, I’m okay.”  I quickly turned around and sat back in my chair.

What I really wanted to say was, get the fuck out of my house!

Doctor, Doctor

As I look ahead at the week before me,  I see that, as usual, it is dotted with medical appointments.  The sad part about it is that, I can’t always tell which doctor is for what. The doctor’s names get all jumbled up in my head and I have to think deeply, now what is that doctor for–my MS or for my CHF (Multiple Sclerosis and Congestive Heart Failure respectively)?  Another sad part about it is that, for the most part, these become occasions much like an outing to me.  Why?  Well let’s get back to the topic of what this site is about.  MS Life.

A life with Multiple Sclerosis is not all that different than a life without it, if you want my two cents worth.  Whoa!  I can hear you yelling at me.  Hang on a bit and I’ll explain myself.

Come on now.  To the world at large, unless we are obviously wheelchair bound; we don’t look like there is anything wrong with us, sitting still that is.  Me, it would be a bit different because I hang down to the right, meaning my head and body slouch down on the right side.  This isn’t always the case.  When I get my Botox injection every three months, I can almost look normal standing or sitting.  It doesn’t help that I have ACH (Arnold Chiari Malformation), as well.  They had to remove several vertebrae in my neck.  I slump because of that as well.

Many in wheelchairs aren’t glaringly disabled.  Right?  We have to have them.  I own one.  I use it whenever I know I have to walk around for a long time, or go on trips.  People don’t know that we can’t walk a straight line or that the fatigue that sets in is like we’ve just been saddled with two blocks of cement around our ankles, prohibiting us from walking more than a few steps.

What about our “drop foot“?  I know that at my worst, I actually was knocking myself right off my feet because my feet were always catching on something that tripped me up.  I should wear my orthotics but I’m in need of new ones.

We don’t present as disabled people to the outside world.  It’s an uneducated public that we contend with.  Still, we go about our business just like anyone else despite extreme fatigue, multiple paresthesias, pain (yes there is pain with MS), and numerous other problems including incontinence.  Most of the things we struggle with aren’t glaringly obvious to the world-at-large.  We go about our day and not many people will know that we are ill so that’s where my “two cents’ comment above came from.

Life with MS IS not a normal life at all!  We just try not to shove it down anyone’s throats. We are polite about it.

  • We smile, maybe too much.
  • We laugh, maybe too loud and too often.
  • We are reliable, oftentimes when we should be in bed.
  • We run our households, because there is no one else to run it for us.
  • We look great, thanks to visits to salons or nail places.
  • We volunteer and step up to the plate, even though people won’t do that for us.
  • We create and work, like others.
  • We are moms and dads to our children.
  • We are husbands and wives and try like heck to please each other.
  • We try to keep an even temperament, even though we want to scream and yell at the world.
  • We are charismatic and charming, even though we are weeping inside and craving solitude.

Getting back to my original point about doctor visits becoming occasions for me.

There is such a war that goes on every day in our lives for both healthy and disabled individuals.  It becomes more intense for the disabled.  (I HATE using that word “disabled” but for lack of another one that describes our daily lives, it’s the best one to use.)  We appear one way but our lives are significantly different than the book cover we wear.   It’s difficult to explain what I’m trying to get across.

You want to go out, but then you don’t.  You want to have sex, but then…ugh.  You want to get up and get dressed.  Hours later you’re still in your pj’s.  If you look at the bullet list above you get the idea.  You aspire to do it all and yet you don’t give a fuck if you don’t any of them at all.

We are inconsistent!!!  We are consistent in our desires however.  Think about it.  Let’s say you have a terrible flu.  You have a fever.  You feel hot then you have the shivers.  You want to sleep but then you want to get out of bed.  You want to clean yourself up but the thought of jumping into the shower seems like so much effort.  You want to clean the house because it’s a pig sty, but you snuggle under the blankets and go back to sleep.  Blah, blah, blah.

This is our life.  Life with MS.  24/7, 365 days of the years!  No getting away from it.  It is what is is.

Going out to see my doctors?  Hey, it could be great fun or it could be, “I think I’ll call and cancel.  Now let’s see.  What excuse did I use last time?”