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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Ups and Downs of Home

Hello!

First off I would like to thank you for your response to my ongoing harrowing and painful dilemma with my legs.  Nothing has changed.  I’m still struggling with what to do next.  I am waiting for my ID card for medicinal marijuana and I’m curious and anxious to see if that will help any.

My neurologist ordered it for all the spasticity I am having but who knows.  It may also help with this pain as well.

I think I’m going to schedule an appointment with a neuro surgeon to see what they have to say.  I do have an appointment with another pain management facility but I just don’t expect much from them based on my experience with the last facility.  Since my internist wants me to try them, I will.  My husband and I believe that we need to get to the root of the problem and get it handled since it seems that this is not going to go away on it’s own.

I’m tired of talking about it.  I will keep you informed about the medical marijuana experience and anything else new to do with all of this.

How are you all feeling?  I’m tired.  I don’t get enough sleep and when I do sleep, it’s always an intermittent type of sleep–one hour asleep, two hours awake.  I have huge dark circles beneath my eyes.

I’ve been thinking about moving.  Not now due to all the medical issues I am having but perhaps this fall or winter.  Not sure yet.

I have a large 2-story house.  The problem I am having is with all the levels on the first floor.  You have to go up two steps into one room, then down two steps to leave it.  This is all over my first floor.  There is the kitchen, my office, and the small family room that is all one level.  A half bath is also available.  Oh I forgot.  We added on a bedroom to the first floor as well with a full bathroom.  However, I hang out in 3 rooms.  The kitchen, office and family room.  I can’t even go in the backyard without struggling to get down some steps, so I don’t go out often.

I need a rancher.  We don’t want an apartment or condo.  We have too much stuff and we both hate living with neighbors everywhere.

This is about all I can handle for today so I’m going to cut it short and sweet.  I will write again soon when I have more energy.  Right now I’m slumped in my chair and leaning way over to the right.  It’s uncomfortable.

Hugs to you all.

 

A PAIN IN THE WHAT!?

As promised, I will continue the story of the pain in my legs.

After a month of recovery, I took off my neck brace permanently.  My husband and I both noticed that my neck did not flop over to the right.  It was straighter although not completely straight.  I could not and to this day, still cannot bend my neck backwards like looking at a shooting star directly overhead.  My neck still hurts a lot.

I made an appointment with a pain management Doctor. When I got there, I was seen by his PA (physician’s assistant).  She listened to my story and I told her it was going on four months since all of this initially started.

The upper most question for her as well as to other doctors whom I’d visited was this, is this Multiple Sclerosis or a back issue?  I can’t even tell you nor does my neurologist know for sure.  Ultimately for me, my question is, who is going to help me fix this?

It was decided that I should get a steroid shot in my lower back.  It was scheduled, I went, and the result was nothing.  It was then decided that I should have an EMG (electormyelogram) test.  The result was that I had pinched nerves in L5-S1 on both sides.  L5-S1 is the location of the bone in the lower back.  They number from 1 through 5.  S1 is the next bone underneath L5.  The nerves being pinched were between L5-S1.  Don’t quote me on this explanation because I’m not sure that this is precisely correct, but you get the gist of it.

Armed with this information she scheduled another shot for me.  This is all done under light anesthesia.  You go home in a few hours.  It was scheduled, I went, and the result was a few hours of relief and then the pain returned full blast.

When I returned to see her with tears in my eyes, she was excited to hear my news.  She said that it was good and bad.  It was bad because she was sorry that the pain returned.  She was glad because having had a few hours of relief, she was sure that she had solved the problem.  It was the pinched nerves in L5-S1.  Her conclusion was that I needed another injection in the same location to see if the same result occurred or even better.  Perhaps the second shot would take, and I could get by without another shot for months.

I then asked her what would happen if the same thing happened where I had relief for only a few hours.  She then replied that I would probably need surgery.  When I asked her what type of surgery, she told me that they would go in and scrape the bones back away from the nerves.  I never heard of that procedure before.  It didn’t make me very happy.  She then scheduled my third shot.

You must realize that all of this took months to happen.  By this time, I was going on 6 to 7 months of unrelenting pain.

I had no idea what a pain management doctor did before this.  I knew one thing.  I needed help for this pain in between their poking around with their shots.   Because of the changes in New Jersey law restricting the use of narcotic drugs that could be prescribed, I would be given about seven days’ worth of a codeine medication.  This medication only eased the pain for about an hour or so and I had to wait six to eight hours before I could take another pill.

The days and nights I spent crying are too numerous to count.  I felt I looked like a zombie with dark circles under my eyes from so many sleepless nights.  I could not get into any position that was comfortable for me whether I was in bed, sitting, or standing.  I couldn’t even stand the seat of a chair touching the backs of my thighs.

Meanwhile, my general internist was someone I needed to send out to pasture.  I was unhappy with her for various reasons including the fiasco at the hospital where she decided that my medications needed to be changed around, not understanding the balance of the two year’s of work it took with my neurologist to relieve me of some of my symptoms from MS.

I had decisions to make now.

When I came out of this office visit with a date to have my third shot and a new script for that week’s drugs, I told my husband everything that was said.

He then told me that while he was in the waiting room, he and another guy who was a patient, struck up a conversation.  This man told him about seeing this doctor for two years with no pain relief in sight.  His pain was strikingly similar to mine but for some reason, surgery was never discussed for him.  My husband was too polite to ask this man why he continued to see this doctor.

Without my knowing about this, my husband had been checking out pain management doctors on the web and found out that these procedures were not FDA approved. Somehow, they were still allowed to happen.  I don’t get any of this because I’m too tired to figure out what this is all about although I seem to recall something like that, also on the internet.

My husband told me that he wanted me to cancel the surgical procedure (the shot).  I burst into tears and asked him then what am I supposed to do?  We sat in the car trying to think straight.  Should I consult with a neuro surgeon?  Should I take the path of the shot?  If I get rid of my internal med doctor, who should I see?  Should I go back and talk to my neurologist?

When I got home it was clear to me that I needed to take things one step at a time.  First of all, change my internal medicine doctor.  I decided to go back to my previous doctor.  Why did I change from him to her?  Dumb mistake on my part.  It was because while I was at the hospital on one occasion, she was my primary doctor on the ward.  My regular internist did not practice at this hospital.  Don’t get me wrong, the impression that I got from her still stands today.  She is a sweet and caring doctor.  She was so solicitous that I wanted to be under her care.  I exchanged an excellent doctor who saw the whole picture to a doctor whose personality I liked.  Once again, dumb mistake.  I took care of that right away and scheduled to see my previous doctor.

I’m so sorry that this is so long winded but if I don’t get this finished in one sitting, I’m afraid It won’t get done.

When I visited my doctor, we picked up as though I had not been away for over a year.  When he asked me how things were, I told him the entire story. I could see he was agitated but he waited for me to finish.

He looked at me and told me, “You get away from those doctors as fast as you can.  What they did was unconscionable.”  He was red in the face as I looked at him with a question on my face.  He knew I wanted to know what he meant by, “what they did”.

He said that to go in the first time and give me a shot somewhere in the vicinity where they thought my pain was coming from without their own imaging studies such as a CAT scan, was unconscionable.  He then said that to give me a second shot with still no studies done on me was also wrong.  Then he said to give me a shot the third time to prove to themselves that it was in the right area was “bleep”.

He was very upset and once again I was a puddle of tears.  He then said that I was probably being used for billable hours.  He asked if I ever met this doctor.  I told him only once, on the surgical floor of their unit.  In three almost four months, I never had a visit with him in the office, it was always the PA .   He asked where I had these procedures done.  I told him it was in the same office building on a different floor.  He laughed and nodded at that.

He increased my gabapentin to 2400 mg which is the max amount, to see if that would help.  I called him in a few days and told him I was in agony.  He then added tramadol and Cymbalta which is an antidepressant but also works on chronic pain.  Between all these drugs my pain has gone from about a 10+ to an 8+.  It often rises as the day wears on and I then add Tylenol Extra Strength to the mix.

Ultimately, I’m a miserable and sad girl going on nine months of this.

My neurologist brought up medicinal marijuana and I’m signed up for that although I haven’t received my card yet.  He thought I could use it anyway prior to all this leg stuff going on so it’s an opportune time to try it.

 

My Take on This

It’s funny how people seem to know that something is wrong with you, outside of the obvious MS thing.  Strangers will come up to me and ask me if I’m okay or if I need any help.  There must be something that I show on my face that I’m unaware of.

Most of the time, I feel that I give a good outward appearance of being pain free from the general population.  Those who are close to me, know.  They can tell.

My dearest friend made a comment about not knowing how I do it.  How I am able to make others around me happy while I am under this boulder sitting on top of me.  I said to her, “what is the point of making everyone around me feel sorry for me.  It’s the last thing I want or need.”

If I’m out, I want to be out and try and get some sort of quality living done.  Otherwise, it would probably be best if I stay at home.  I don’t want to live in the world of “me”.  I don’t want people around me worrying all the time.  I can’t imagine living my life in the world of “me” instead of the world at large.

I don’t want to draw people into my world.  It’s not a very pleasant place considering everything we all go through with having Multiple Sclerosis.  I know you understand this.  Instead, I want to educate people.  I want them to see that having a disabling disease is not the end of the world.  Life goes on, if you want it to.

It’s a choice we all have to make.  Do we draw away and become reclusive?  Or worst yet, do we embroil everyone around us into our life which is oftentimes miserable?  Why?  Why would we want to do that?

It’s not my personality.  I don’t feel I have angel wings although my friend thinks I do.  I don’t want to some day leave this world with people eulogizing me as the woman who suffered so much.  I want to be remembered as a decent human being who cared about others.

I throw up in here.  On my pages of written words I tell it all good and bad.  You witness my life as it truly is.

I will keep you abreast of what other decisions I make regarding my pain.  I’m glad this is all said and done.

I’m So Fricking Tired!

Fatigue.  What is it?  Medicine Net describes it thus:

  • Fatigue (either physical, mental or both) is a symptom that may be difficult for the patient to describe and words like lethargic, exhausted and tired may be used.

The dictionary website describes it as this:

noun
  1. weariness from bodily or mental exertion. a cause of weariness; slow ordeal; exertion:
the fatigue of driving for many hours.
  1. Physiology.  Temporary diminution of the irritability or functioning of organs, tissues, or cells after excessive exertion or stimulation.

What about fatigue in Multiple Sclerosis?  The above MS website has this to say.

Fatigue
People with MS may become more easily worn out after physical activity than usual. In addition to experiencing physical fatigue from doing simple things, people with MS may also experience mental fatigue from depression. There is also a type of fatigue called “lassitude” or “MS fatigue” that many believe to be unique to people with MS, which is generally more severe than normal fatigue. This type of fatigue may happen almost every day and could start early in the morning after a good night’s sleep. Lassitude also often worsens with heat and humidity.

Here is what fatigue means, not a quantified version of what fatigue is.

  • It’s the inability to sleep soundly at night. Yep, you heard me or read me…whatever.
  • You want to sleep but you can’t or maybe you won’t. You start out in bed and you fall asleep, but after an hour or two, you wake up.  Why?
  • Incontinence, must go to the bathroom.
  • Pain, you wake up with it.
  • Brain turmoil, there is too much going on in your head and it won’t let you rest. A sense of having to get something done.
  • You awaken bright-eyed and bushy tailed.
  • For me, I prefer night to day.

When you wake up, whether it’s in the morning or in the middle of the night, you are going to feel tired.  That’s true, but tired and fatigue are two different things.  Tired is due to all of the above, so is fatigue, but fatigue is so much more than that.

You want to go back to bed, but you don’t.  I know.  It’s a conundrum.  It’s habit forming to stay up once you wake up.

Another reason is that you’re too “tired” to go back to bed.  I know, it doesn’t make sense, but those in the know—know.  It takes too much energy to crawl into bed again and go through the whole process of trying to sleep.  This part is fatigue.

It’s easier to just stay up and walk to the computer with coffee in hand than to go through the nightmare of the sleeping process.  However, once you’re at the computer, or watching TV, you fall asleep with your coffee in hand.  You wake up with scalding coffee dripping down you.

You jump awake and you hold your nightgown away from your body to stop the burning, but you don’t go change into something clean.  You wait until everything cools down and you continue doing whatever you were doing until you fall asleep again.

The day becomes a nightmare.

You try to listen to conversations but you feel yourself falling asleep.  You snap awake, but you find yourself sliding down again.  You can’t control it.  If you’re doing something physically active, it’s easier to stay awake, but I’ve found myself falling asleep standing by the sink doing dishes.  You have a form of narcolepsy.

You have no desire or very little desire to do anything.  You force yourself to do things, nonetheless.  At least I do.

I am blessed with artistic abilities in various forms, so that can keep me busy—for a while—then I fall asleep.

You feel compelled to say yes to friends and family to do things with them and yet you have this deep-seated desire to say no.  When it comes time to do this activity, you bail out or you go and try your best to be “there” in the moment.

Fatigue to me is this overwhelming desire to stay in my jammies, which I do anyways most days, and do nothing.  My head is too heavy to lift, so are my arms and legs.  I want to lie prone.  I want to do nothing and think about nothing.  I don’t care about anything.  I am neither here nor there about every conceivable subject.  However, what I just wrote is the last thing I want to do.  I don’t want to lay prone and do nothing.  It’s impossible for me to lay and thing about nothing.  I do care about everything.  I am here and there.

Once again, I’ve written things that may be confusing to people.

I’m not explaining this very well, but I’m here to tell you, yes you, who think that you know what fatigue is, you don’t know anything!!!

You are tired and sometimes feel fatigue.  That’s it.

We are fatigued and sometimes feel tired.  Another ball of wax entirely.

Nothing has happened to me to cause me to write on this subject except that I’m feeling fatigued.  My mind has gone on a hiatus.  It requires rest and quiet.  Not rest in the way of sleeping, but a slowing down of the world at large and being in a place where decisions belong to someone else.  Unfortunately, my world does not slow down.

People think that when you are disabled and a stay-at-home person, that you have all this time on your hands to just do whatever you want or do nothing at all.  To a certain extent, this is true for some.  This is not the description for others.

I will talk about this in my next blog because if I start it here, this blog will be ten pages long.

Hugs to all who read this.  I sincerely appreciate your eyes that touch upon the words written by my shaking hands, the heart that takes to heart the words of confusion and yet cohesive linear paths to what it is I need to say.  Well maybe not so linear.

 

 

 

Sleepyhead

'Boy, are my eyes tired!  I had REM sleep all night long.'I’m so sleepy all the time.  I can remember being this way with my first pregnancy.  I could drop off to sleep no matter where I was at or what I was doing.  I’m the same way now.

It’s embarrassing how sleepy I can be.  I fall asleep in the middle of my sentences or in the middles of someone else’s sentences.

A speech therapist was at my house, the other day.  We were working on helping me with my memory problems.  She was teaching me, at least trying to, find methods of coping with it.  What she didn’t realize is that I already have all the coping mechanisms I can handle.  I know more than she does about MS (multiple sclerosis).

We were in the middle of an exercise when I suddenly fell asleep.  The next thing I knew she was standing next to my chair.  She  asked me if I was okay, with great concern in her voice.  I laughed and she looked even more concerned.  I asked her if I fell asleep.  She said she wasn’t sure what happened.  I then explained to her that I had a bit of narcolepsy.  I went on to explain to her that most days aren’t bad but that on other days, if I were to tally up the waking minutes against the sleeping minutes, I wouldn’t be sure which would win.

Sadly, this was a major reason why that I finally gave up driving and sold my car.  I didn’t want to fall asleep at the wheel.  I had already had incidents where I knew I was going to fall asleep or felt in danger of falling asleep while driving.  I had to pull over several times.

 

Mr. Sandman

images (1)The sandman came today.  He knocked on my door last night and dummy me, I let him in.  Mr. Sandman did not take any hints from me letting him know he had overstayed his welcome.

I sleep maybe two hours at a time any given night.  Most of the time, I just get up and find something to do.  I require little sleep to function.  At least that’s what I believe.  My doctor’s don’t agree.

I’m wondering right now what Mr. Sandman does when I fall asleep.  Does he sit there watching me rest?  I had to question this today because when I woke up from my normal two hours of sleep, he was still here.  I thought I had made it clear to him that it was time to go home.  I went to the bathroom and came back to my office chair.

Oh, I forgot to tell you.  When Mr. Sandman came, I was in my office.  I fell asleep there while sitting in my chair.  When I got back to my chair intending to work (trading), Mr. Sandman was insistent on making his presence known and before I knew it, I fell asleep again until about 7:30 am.  I couldn’t believe it!

Mr. Sandman wasn’t around when I woke up the second time.  Good riddance.  He is not like my Man in The Moon.  I referenced him in an earlier blog.  The Man in the Moon can come over any time he wishes.  He is always welcome here.  Mr. Sandman is a different story.

I don’t know why I’m so averse to having him around.  Perhaps it’s because he steals the time away from me and The Man in the Moon.  Perhaps he is jealous?  I can tell you this much.  We don’t get along at all.  In fact, every time he appears, I tend to fall asleep.

Now here is what vexes me.  The Man in the Moon hung around with Mr. Shadow all day long.  You know Mr. Shadow who seems to follow me around unless he is standing in front of me from a different view, wanting to make his presence known.  I’m accustomed to Mr. Shadow.  Mr. Sandman doesn’t make himself known all the time.  His presence comes and goes into the night or sometimes during the day, however; I can always sense him around me.  He exhausts me with his persistence.

Getting back to reality, I slept most of the day in addition to what I slept last night.  I think it’s my body’s way of catching up for all the lost hours of sleep that I need.  Maybe it’s just the fatigue that we get with Multiple Sclerosis.

images (3)My Take On This:

There is no fighting this sleep.  It takes over completely.  It doesn’t matter if I’m cooking or washing the dishes.  I literally will fall asleep standing by the sink or by the stove standing up.  Dangerous?  Yes.  I should acquiesce to the state I’m in and do nothing, but I feel such a sense of responsibility to cook the bacon that is brought home by my husband who brings home the bacon.

This relentless need for sleep is different than the narcolepsy I experience.  I can’t control the narcolepsy either but it’s for a few seconds at a time.  This need for sleep happens for hours at a time when I nod off.  I never know how long it will last.  I do fight it but I always lose.

This is nothing to lose sleep over.