Then Was Then This is Now.

that-was-then-this-is-now-quote-coeurblondeHello again,

I wrote a lot about the pains in my legs.  I also wrote about the treatment I had been getting for these pains both bad and good.  I believe I left off with seeing a new Pain Management Doctor under advisement of my Internist.  The plan with the new Doctor was to go ahead and try another shot in my L5-S1 joints of my spine.  He decided to do it bilaterally, meaning that since each disc of the spine has two nerves coming out of it, both right and left sides, that it made more sense to do the shot on both sides.

It’s been about four days since the shot.  I’m feeling better.  It’s not to say that the pain is completely gone, but I’m feeling almost normal again.  I hold my breath each morning when I wake up.  I take tentative steps out of bed hoping that how I felt the previous day is maintaining the status quo.  Sure enough, it has.  Let’s see how long this last.

Between my Internal Doctor adjusting some of my meds to the maximum dosage and the shots, I think I may land up having a decent summer.  I’m so grateful.

Moving on to other bits and pieces of living life with Multiple Sclerosis.

Many of my medical caregivers are impressed with how I’m still standing on my feet, digging ponds in my back yard, and the list goes on.  They are also impressed with my mental attitude given the history of Depression with Post Traumatic Stress Syndrome.  (There was a time I would not have mentioned my mental illness let alone write it for the whole world to see).

I’m not impressed.  For me, I don’t know any other way to live my life but to fight.  It comes natural to me.  My life has been an uphill battle since I was a child, so fighting to live my life my way is the norm.

I don’t want to write about how terrible MS is.  Sure, it is extremely difficult and can be very painful for some.  Not all of us progress the same way.  I’m at a stage where I’m very symptomatic all the time.  This doesn’t mean I want to wallow in it.  I don’t want to use this written venue to spout out how terrible I feel.

I give you the facts.  I tell you everything I’m going through.  However, I don’t pontificate about the woes of it all.  There are times when I do express my deepest thoughts.  What made me cry, what upset me, and so forth.  But again, these are facts.  This is my life.  This is not a venue, at least for me, where I’m expecting claps on the back for being strong or whatever.

For me, this venue is about educating people about Multiple Sclerosis and what can happen to a person along the way.  Armed with this information, they are aware and can be prepared, should these very issues happen to them.

Sure, there are times when I’m miserable, like these past eight months with intractable pain with no relief in sight.  However, for the time being at least, there is relief.  Should the pain return, then we’ll try something else.

I was delighted that I was able to treat my husband to a Father’s Day dinner.  The amazing thing about it was that I was able to sit on a chair without wiggling the whole time trying to find a pain free way of sitting, and that I sat through the entire dinner without having to get up early and wait for my husband outside while he paid the check.

Then was then and now is now.  What happened before is now history and today is a new page in history.  I concentrate on what is important and don’t bemoan what is lost.  There is no point in it.

This isn’t something learned overnight.  I believe that one must go through a learning period of comprehending this.  When you get tired of hearing yourself talk, then you know it’s time to change your perspective.  When you get tired of reading your own words, then it’s time to change something.

I’ve gotten to a point where I just can’t tolerate being by people who are stuck in a rut and won’t take the helping hand in front of them to pull them out.  They insist on staying there believing that everyone else wants to hear them wailing from the rut, that they can’t get out.  I don’t want to hear about it and I don’t want to read about it.

I am not looking for sympathy.  I’m looking for solutions.  I’m grateful when someone comments about how they like reading my words.  I appreciate that because it takes effort and thought to do it.  I give to you with my words in the hopes that you come to understand the life of people like me.

I try to stay in touch with other MSers but not when they drag me down.  I can’t afford to be dragged down.  If they need help and they ask for it, I will gladly give it to them.  I don’t have the strength to try and pull someone out of the rut if they in turn, try to pull me in with them.

We all have our reasons for writing.  They have just as much right to this venue as I do.  This doesn’t mean we have to like each other’s blogs.  Some of these bloggers are excellent writers.  They use their blogs to satisfy their own needs, whether it is like my reasons or for their own reasons.  Kudos to them.

What it all boils down to is if I’m going to spend my time writing, I would like to think that I do it well and that I give people food for thought.  Other writers are also giving people food for thought.  I’m proud of all us bloggers who write about this disease called Multiple Sclerosis.  It’s important that people read all our blogs to see the effect it has on us at various stages of the disease.  How different we all are and yet, how similar we are.

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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.”

 

Then What?

clock tickingThe night spreads its blanket over the house and the dogs have taken their places for a night’s sleep.  My husband has gone upstairs to bed.  All feels settled down and calm.  I love this feeling where I am with my man in the moon secluded while the stars twinkle around us.

I am watching the time on my computer.  Nothing to eat after midnight.  I am worried and more than a little scared.  With each tick of the clock I am drawing closer to the fact that tomorrow I will undergo yet another surgery.  This time it is for removal of 4 discs in my neck.

I am impinged.  Meaning my cervical spine is being compressed by offensive discs.  They intend to cut my neck in the front, draw aside my esophagus and anything else in the way, then uncover my spine.  The discs will be removed and then a tube will be placed where the discs once lived.  All will be well according to the surgeon’s standard, but will it?

It’s been nearly four months of agonizing pain.  Through the dawning of each day and the setting of the sun, I have lived with this pain, unrelenting and worsening as the days passed, I suffered mostly in silence.  However, there have been many days and late nights where I have succumbed to loudly screaming and giving in to the waves of tears that I have held back.

I’ve taken pain pills and waited for the wash of not caring so much about the pain.  The pain pills cut into the pain but does not take it away.

Will this surgery help my legs even though the cervical spine mostly controls the upper body?  Will I be freed from this unrelenting and excruciating pain?  Will I be able to walk with my unstable MS gait but be free of pain?  Will I not care about finding a way to sit or lay in bed where I can find some relief?   Will the pain of a surgery that takes 3-4 hours give way and give me back my freedom of knowing what it feels like to have little pain in my legs?

I have a million thoughts running through my head.  If this doesn’t work then what, I asked my MS neurologist.  He shrugged and told me to work with my pain management doctors.  I looked at him and burst into tears.  I can’t take this anymore.

I will have an EMG exam following the surgery and when I’m feeling up to it to try and isolate what nerve or nerves are being affected.  Perhaps I won’t need this painful test?

Then what?

My Take on This

There is no take on this.  It is what it is.  I can only wait and watch the clock ticking.  I have no delusion or faith that this will work.  Hope for the best?   I can’t.  I’m too tired to even try.

The clock ticks away.  I sit here with the man in the moon waiting for then what?

Can I Run Away From Myself?


Well folks.  I’m here to tell you that right now I’m beside myself handling all this pain I’ve been experiencing.

It all started almost three months ago.  I began to feel a strange tingling in my legs, stronger on the left side.  It was strange because it just went from my knees to my ankles.  It came and went.

Then the intermittent periods between it’s coming and going shortened and I started experiencing pain.  It was the sensation of a charley horse.  You know how you know that it’s coming?  You start to feel a pain that builds and builds then it gets to the peak and goes over into excruciating pain.

What happened to me is that it went over into excruciating pain and it never went away.  It’s horrible.  Add to that the tingling sensation!  It decided to join the pain party and get stronger.  It also decided to stay at the party like an uninvited guest who doesn’t know it’s time to go home.

Have you ever used a tens unit?  Well if you turn the tens unit too high you get awful pain from it because it’s like an electrical sensation that’s too high.

This is what I’ve been living with for two months now.  I’ve been to the hospital twice trying to get help for the pain.  They helped me over night by giving me morphine and they ran all sorts of tests.  They felt it was coming from my back.  There was no definitive reason why they thought that, but that is what they said.  During the one stay at the hospital, their solution was to give me a heating pad to put on my back.  This was the instructions the hospital neurologist gave.

It was a very odd visit with him.  He could barely hear and no matter what I said he insisted that I had back pain.  I kept insisting that I didn’t.  My general practitioner also felt that way.  She felt it was sciatica.

There is no point repeating myself relentlessly because I know my last blog mentioned a lot of this.

Here is where I’m at now. MRIs were taken of my lumbar spine and my cervical spine.  My lumbar spine showed a bunch of stuff, but the radiology report was not definitive that about anything impinging my spinal cord.

My neck, however, showed that in three different areas, my spinal cord was impinged.  It was decided that I see a pain management Doctor for my legs and surgery for my neck.

I went to see the pain management Doctor.  I was given Tramadol for pain which is dispensed one week at a time and that they would like to try an injection in my back, under anesthesia, to block the over active nerves from sending pain signals to my legs.  This will be done on the 15th of January.  I figured, what the heck.  I will try anything to get rid of this pain.

Then I saw the neurosurgeon about my neck.  He told me, they will go in through the front of my neck, push everything to one side, in order to reach the cervical spine.  They will then remove three discs and replace the whole thing with a rod. But wait…there is more!

I finally saw my MS Neurologist.  I bombarded him with everything that had occurred since we last met.  I did wonder if the pain in my legs was from MS or something in my back.  Since the consensus from so many doctors was that my back was the root of the problems, I went along with the crowd.  However, my neurologist asked me to explain the pain from onset to where it was that day.  I did.  He looked at me and he said, “What you’ve explained to me is a classic case of neuropathy.”

                “What do you mean?”  I asked.

                “No kidding.  You explained to me precisely what happens with neuropathic pain.  The fact that it doesn’t seem to be connected to pain in your buttocks or your back and that it seems to be concentrated in just your lower limbs.”

                “Oh no!  What should I do about the nerve block procedure?”  He thought about it for a second and said.

                “Well just in case I’m wrong, I would go ahead with the nerve block.  I doubt that it will help, but if it does, then great!  However, I think we will try and treat this with medication as well.”

I thought about everything he just told me.  On the one hand, I was pissed off at all the doctors who treated me at the hospital with heating pads and morphine.  Why in the world didn’t they think about neuropathy and help me with medications.

I was also pissed off at me.  Why didn’t I call my Neurologist when all this started?  I thought about it, but I didn’t act on it.  Instead I waited hoping it would just pass like so many other things come and go in MS.

He did agree with the Doctors about my neck because he too had received a copy of the radiology report.

My Take on this:

Relief from pain.  I don’t care what it takes.  I’ve lived in 24/7 pain for nearly three months and my heart goes out to people who live in this kind of pain for so much longer.  I can see why some have suicidal thoughts with this kind of pain day in and day out.

I wanted to run away from myself.  I wanted to shed my body and just turn around and kick the old thing.  I wanted to run as far as I could from it. 

I usually look at my life five minutes at a time, but right now I have things looming in front of me that is difficult to ignore.

The shot should be nothing…I hope.  But the cervical spine surgery is not something to slough off as nothing.  I don’t know how much more my body can continue to take at this point.

Let’s forget about all that I just wrote.  There are a lot of positives that can loom ahead in the future as well.  I should not be ignoring that. 

Take one step in front of the other and …  and…

Does anyone know how to run away from myself?

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

 

MISERY LOVES COMPANY?

Misery loves company?

Multiple Sclerosis, like so many other debilitating diseases that plunder your life with no end in sight, is a disease that wreaks havoc on your life.  My life with MS has taken control for the past several months to a point that I’ve been unable to do much, including writing.

For some, writing might be a release of sorts, but for me, who is trying to relay a message of hope and laughter in the face of unquestionable progression into an even more profound state of disability; it has made me unable to type such positive messages.

The difficulties that have beleaguered my life have nothing to do with MS.  Unfortunately, however; we all know that any traumatic events in our lives will set us back.

I love writing.  I love composing music.  I’ve been unable to do either one.   My pianos sit quietly waiting for me, all the while collecting dust.  I won’t let anyone touch them to clean them because I simply don’t want anyone touching my instruments.  They mean too much to me.

I pass the dusty pianos many times a day.  I look at them feeling guilty, however; the pianos aren’t judging me.  They sit there quietly waiting for their lover’s touch.

Writing?   I have done everything else at my computer except write a decent piece of work.  I’ve played games, done day trading, gone on Facebook only to log off immediately, and so forth.  I’ve spent a lot of time watching You Tube videos.  They help pass the time.  Don’t even get me started on why I don’t watch television to pass the time.

I feel as though I’m watching myself from outside of myself.  The one me, looks at me incredulously and mouths, “Why don’t you practice what you preach and pull yourself out of this?”  The other me, looks at me and thinks, what a mess!  She needs to get her hair and nails done and then she would feel better!  Hmpf!  Then there is the real me, a combination of all; the cheerleader, the vain, and the artistic one. This me knows that I still have some huge hurdles to get through still.  I need to prepare myself for them by sheer will power.

I need to do this on my own.  It is what I’m accustomed to and what I prefer.  I find resources along the way to help me.  What I hate is this.  People who love me want to help me.  They think that if I lean on them that somehow, they will be able to alleviate the things I feel.  It doesn’t work that way with me.  They don’t seem to understand, although they should by now, my methods of dealing with pain, be it emotional or physical.  It’s a private ordeal that I go through and no amount of “talking about it” to anyone; regardless of how close they are, will alleviate or ease anything.  It’s presumptuous of them to think that they can do anything about it at all.

I understand that what I’ve just written is rather cruel.  I would think that by now those that love me, already know that I am like a person who has just stubbed their toe.  I don’t want someone running over and touching me and saying, “Are you okay?  Can I help?  Where does it hurt?”  You know how it is?  You want to slap their hands away and let the pain ease off on its own before you can even begin to speak or interact with someone.

All of this doesn’t sound like me.  Does it?  It does, if you knew the painful young life I led, but that’s for another book.

 

WORD TO SELF:

Misery in your world does not love company.  Misery is a private issue for you and it hurts like hell to write it down on paper for all the world to see.  But you’ve done it!  I’m proud of you.

Emotional Misery: 

There are some people in your life who think you besiege yourself with living in past and just keep harping on it.  To some point, this is true but only with the people who are a part of that story.  A resolution that satisfies you must be settled and until it is, you will continue to take the steps needed to resolve some issues.  You will not allow people to ride around on their mighty self-righteous horses stomping you down into the ground.  You continue to stand in the way of their steeds until they are ready to life you up on the horse with them, as is your due.

I caution you.  You know that saying about bringing horses to water but you can’t make them drink.  This might be the case for you.  I know.  This is the crux of your misery.  It is up to you to decide when these people are no longer a viable part of your present life.  You have to let them go.  You can’t force people who are convinced they are right, that they are wrong.  They are unyielding to you.  Why do you yield to them and give them this power over you to make yourself miserable?  Think about it.

Physical Miseries: 

You know that you have this uncanny ability to spring back from physical injury.  You’ve had several surgeries already and its only April.  Now you see another huge one looming ahead.  Face it!  You’re afraid of this one.  You think that you’re not strong enough to get through it because you are already so weakened by various hospital stays this year, right?  This is true.  You may die?  This is true.  You may die anyway from some other ridiculous thing that comes your way even prior to surgery, right?  We all die.  In the face of reality, if you can accept the reality of what may or may not happen, it’s no longer something to fret about.  Take it step by step and prepare for either case.  You get through it or you don’t. 

There are things to be done if you don’t.  Do them.  Remember your “5-minutes At A Time Philosophy”?

Practice it.  You’ve let the ball drop in your panic.

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?”

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.

 

Multiple Sclerosis Is A Pain!

I am so pissed off.  I don’t know what happened.  I have been working on my book trying to get it done in December.  I’ve had no problems with accessing it.  Now, for some unknown reason, the file was saved to Drop Box and is nowhere to be found.  The desktop icon that I was using to access my file, now says “shortcut”.  Huh?  I have spent hours looking for it and I can’t do it.  I’ve sent a message to my son on Skype in the hopes that he can find it for me.  He’s a techie.

I’ve been so tense lately.  A few weeks ago, I bent down to pet my two dogs when suddenly I just toppled over.  I fell on my knees first and then my hands.  I landed up laying on my stomach while my dogs licked my face.  I’m glad they were happy.  It’s been several weeks since this happened and my knee still hurts, but it’s getting better.

Then there is this business with my eyes.  I had cataract surgery on both eyes.  One was done and then 3 weeks later the other.  I’ve been walking around with halos and blurry vision in one eye.  It’s supposed to get better but so far it hasn’t.  I’m seeing the eye doctor on Friday and hopefully he will help me out.

Insomnia is wearing me down.  I drag around all day having narcoleptic episodes all day long.  I wake up with things on the floor that I was holding while my youngest puppy is delighted with something new to play with.  Holding coffee in my hands is another thing.  I wake up almost screaming because hot coffee has spilled all over me.  I have to clean up that mess.

A few weeks ago, I was complaining about not going out.  Now all I want to do is stay home.  The idea of going out exhausts me just thinking about it.  I tell my husband that we will do this or that and then five minutes later, I’ve changed my mind.  I change it back again.  then I change yet again.  This goes on and on until finally it’s too late to do anything.

I’m still seeing double.  So now I know that it wasn’t my eyes but it’s due to Multiple Sclerosis.  You wouldn’t think so, at least I wouldn’t think so, but it’s incredibly aggravating to see twins of everything.  I try to pick up something and I miss it.  Or I go to put something down and I miss that also.  Whatever I was planning on putting down now tumbles to the floor.

I was baking the other day and my cup of flour that I was trying to put into a bowl, dropped onto the counter and the floor.  I missed the bowl completely.  So I had to clean that mess up as well.

It’s like everything is acting up all at once.  I hate the spasms and the impingement of a nerve in my neck.  Those two are extremely painful and make me cry out when they happen.  The spasms are in my legs.  I can feel it creeping up on me.  It doesn’t matter if I’m sitting or standing.

I realize that I’m in full blown exacerbation.  Or maybe this is it for me.  This could be how I will be for the duration.  My Doctor felt I was no longer Relapsing/Remitting MS.  I’m not willing to accept that yet.  “This too shall pass”.  That’s what I always told myself when I became ill because I knew I would come out of it.

For those of you who don’t know, with Remitting/Relapsing MS, you get ill and numerous things happen at once.  You become very ill.  Oftentimes, at least with me, this leads to hospitalization and IV steroids.  Then you go home with pill steroids and taper off.  This helps to hasten the relapse part of MS.

When you come out of it, you don’t come back as you were.  You come back with a bit more disability.  You’re almost new but you’re not.  That’s the problem with MS.  Over time, these all add up to a cumulative effect of becoming more frail and vulnerable.  You slowly spiral downwards.

It’s all a mess.  You struggle hard to keep up the journey forward but it’s like walking against the tide of water in the ocean that is unpredictable.  In a way, you sort of relapse/remit every day as well.  You go through periods of time where you feel almost normal and then in an hour you feel terrible and the day is shot.

I gather you all can guess that it’s been a difficult time for me.  I’ve had six surgeries this year and I need another one.

My usual chipper blogs, well they weren’t chipper but they ended with a positive outlook.

Let’s see what I can do here.  You guessed it…..

 

MY SPIN ON THIS:

Let’s face it.  It’s not only us who suffer from difficult things in life.  There are so many things that go wrong in any person’s day-to-day activities.  There are many other conflicts that we all deal with whether they are psychological, personal such as abusive, stress over children and home, and on and on.

It’s how we handle all this that measures who we are as people.  Don’t do it for someone else but for yourself.  I don’t care what anyone else thinks of me.  I’m too old for those games, however; I do care how I feel about myself when I lay down to rest at night.  

This doesn’t mean that I don’t cry, mope, scream, laugh hysterically, and shake my head over the inexplicable and uncontrollable events that suddenly pop up in front of me. We’re not looking for it to happen, we bang right into it.  Taken by surprise, we react in many different ways.

So it’s up to us to decide how we’re going to deal with it once we get over the shock of it all.  Do we lay down and immerse ourselves in the tiniest and rudimentary pain of it all, or do we stand up in pain and continue on?  

I know, personally, many who seem to have given up.  What happens to them?  They get worse much quicker than they need to.  If it hurts too much to walk and they start using a wheelchair all the time, their legs waste away.  There’s a thousand things and ways that they quickly start to lose control of their bodies.  Once they get that ill, they lose control over their emotions.  At least this is my opinion from watching people I know.  

I ask you, why do that to yourself?  All of this will happen anyway but why speed things along?  I have a few answers to that question but this is not a blog on psychology.  

I prefer to stand in pain, but I’m standing.  Walk in pain but I’m walking.  Go out in pain, but I’m out of my house.  Go to dinner with high hopes that I can stand the restaurant’s noise and people chattering, but I know I will leave the table before dinner is over.  At least I went out to dinner.  As so on and so forth.  You get the idea.

It’s your choice.  Choose.  For right now, I’ve got dinner on the stove and my husband will be home shortly.  I’m in extreme pain, but hubby works all day and comes home to me, half the woman I used to be.  He panders to me all night.  The least I can do is make him a nice dinner.

Time?

sena-20clock2I have had so much time to think lately.  I don’t think I care for it.  The gift of ‘thinking time’ comes along with a lot of pain from recovering from one thing or another which as you know means pain.  There is no right answer as to whether this prolonged period to think about things is good or bad.  I would hazard a guess that it’s both.

I had a fall the other day.  It was because I bent over to pet my dogs while standing and not holding on to something.  Dogs being dogs were excited.  They were jumping up at me and leaning up against me to get their share of the petting.  I lost my balance and fell forward onto my hands and knees.  Mind you, these dogs were not a large-breed dog but two tiny Chihuahuas.  I weigh a lot more than they do but these days, a drifting feather could knock me over.

It took a friend’s help to get me up off the floor.  I couldn’t figure out why I couldn’t stand up on my own when I could before.  I tried my usual technique but gave up and called my friend.  I had injured my knee, nothing major, but enough to prevent me from getting up.  There was simply too much pain.  My friend asked me about my wrists and I told her they were fine but yesterday they started hurting as well, particularly the right one.  This just happens to be the one that has carpal tunnel syndrome.

I had a carpal tunnel repair on my left wrist about a year ago and I should have done the right one as well.  I was too afraid to be without both wrists at the same time.

You know what I hate?  I hate that the last few blogs of mine sound and read like other blogs where all people do is complain about issues…all their aches and pains.  However, in order to explain all this time I have to think, I need to go into how I have this time in the first place.

Normally, I keep busy with a dozen different projects but with all these surgeries, falls, and the ongoing recovery not only from the physical aftermath of such activities, the repercussions that it has on my Multiple Sclerosis to boot.

My Neurologist tells me that it takes anywhere from six to eight months to recover from any one of the things I’ve gone through to get back to baseline in the MS sense.  The way I figure it, I’ll be in my grave snug as a bug with the critters therein, before I catch up to my baseline.

Another year flips over on the calendar for me tomorrow and perhaps that is why I’m thinking about time.  Time past, lost time, wasted time, and all the other zillion words you can place before the word time.

What’s bugging me right now is wasted time when time is a hot commodity in my lifespan.  I know!  I can hear you shouting at me!  “What about five minutes at a time?”

“Hey, it’s my rule and I have the right to break it occasionally!”

Do we all do this, I wonder?  Do we change our inner lives to meet the expectations of someone else in our life?  Is this being true to ourselves?  Have we lived a lie?  Have we just settled?  Have we become so adjusted to someone else’s life that it becomes what we perceive to be what we desire?

If we’ve been happy, how much happier could we have been had we been true to ourselves?  If we’ve been partially happy, the same question.  If we have known all along that we weren’t living the life we wanted to, why did we do it?

Is it easier to lie to ourselves than to admit to our self that we’re unhappy because then we would feel compelled to do something about it?  Worse yet, what if we knew we should feel compelled but decided not to change a thing?  Was it easier to make do?

Worst of all, what if the person we were with was the person we wanted to be with but that person was not capable of living in your world?  You had to conform to be in their world!  Would that make you a self-sacrificing person for love or would it make you simply stupid?

Is this what happens to someone who is sitting around waiting to heal?  Think about things that require answers if you want peace of mind.

I’ve taken all this time that I have to answer some of these questions that pertain to my life.  It came as a surprise to me, some of my answers.  Let me rephrase that.  Put on paper, it gave me clarity where I wasn’t necessarily looking for clarity.

You see, I had some time on my hands.  Did I waste my time?  Nope.  I think whether you have Multiple Sclerosis or some other disease that has you sitting around with time as a companion, that you may as well answer these questions, and then a whole slew of other questions I’m sure will occur to me before I go to meet my maker.

Maybe this is the natural process of aging.  We can do less, so we think more.  Which brings me to my last question.

Why could we not see so clearly when we were healthy?