TRY TO REMEMBER

Im confusedI’ve been seeing the man in the moon into the wee hours of the morning.  Every time I try to sleep, I can only do so for a couple of hours and then I’m up again.  I’m told I have very dark circles under my eyes.  I didn’t need to be told.

My mirror reflects back at me the sight of a woman who appears ill.  If I go through the whole makeup routine, then the mirror reflects back at me a woman who appears ill with too much makeup.

I have been busy with so many things that I don’t have time to think.  In fact, the actual thinking that I can do, is mostly disparate pieces of puzzles, floating around in my brain looking for another piece to lock onto to form an entire picture.  That’s not how my brain works any more.

For those of you interested, I have a favorite app that I use for doing jigsaws on the computer.  It’s called Brainsbreaker.  Click on the word and it will take you to the link.  It’s a great way of taking your mind off things.

There is not much to write about when you don’t go out.  I feel like a recluse.  Having given up my car which I regret doing, I find myself like a bird in a cage, looking forlornly out through the bars.  Even if that bird was let out, his wings have been clipped, so he can no longer fly.  If anything, he could hop around from one location to another, but he would still be a caged bird with just different cage walls to look through.

My life at home, of late, has been one of oil painting, playing games on the computer, Facebook, composing songs then painstakingly putting the notes into the score.  Then repeating the whole process when I add a new instruments to the score.

I also keep busy writing my book and in here, although it doesn’t appear that I’ve done much in here lately.

Confusion, insomnia, incontinence, tremors, spasms (spasticity), optic neuritis, falls, loss of balance, hearing problems, paresthesias, peripheral edema, incredible fatigue, chronic iron deficiency, extreme vitamin D deficiency, congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD),  allergies, and a huge seroma in my gut that will be removed in two weeks.  It’s larger than a football.  Add to that a failed carpal tunnel surgery.  I’m sure I’ve forgotten some things but you get the picture.

This is my life with MS.  My days can be nightmarish and usually, people would get their restorative sleep at night.  Oh no!  The man in the moon wants to go dancing!  I waltz away with him till I am literally drooping in his arms.  I’m sure there is a large blotch on the moon to human eyes if someone knew where to look through a telescope. That would be me in the arms of the ever present moon.  He does hide sometimes.  He has a right to his days.

I’m not complaining.  I sometimes put everything down so that I can take a critical eye to the list.  I wish it were a “To Do” list so that I could scratch things off as I heal.  No.  This list is permanently penned to my refrigerator with indelible ink.

If I complain about anything, it would be the discombobulated thinking that I live with.  I actually have a “To Do” list.  I see something that I can do and I start to do it until something else occurs to me.  So then I need to go do that.  However, before I finish that, something else pops into my head.  This goes on all day.  At the end of the day, I have all these things half finished.

Do I finish them the next day?  More than likely not.  I move on with new things that need doing which adds to the confusion in my home and in my brain.  Oftentimes I look at something and don’t know why I was doing what I was doing to it.  I think, “What in the world?”

My other chief complaint is precisely what I wrote above.  My memory.  I don’t know why it keeps playing games with me.  If it were a separate entity from me standing right in front of me, I would smack it upside its head and tell it to get its act together.

I try to remember things.  Say I’m in the bathroom and think that I need to purchase milk.  I tell myself to write it down on the pad that is on the fridge.  By the time I wash my hands and walk out the door, I have forgotten about it.  I will go to the fridge and stand there wondering why I went there.  I open the door and pull out a can of something or other to drink.  Later on in the day, I will think.  Oh I need to get milk.  The whole thing starts all over again.

The fatigue  This is too comprehensive to talk about right now.  I will tell myself to write about it.  LOL

I hope I remember.

 

 

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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?”