burningsunIt is so hot today, and It’s been hot all last week.  It looks like this week will be the same.  Heat is not good for people with Multiple Sclerosis, who have to deal with heat intolerance.

I copied this from the site, Brain Blogger.

“Increase in temperature worsens the symptoms of MS
Most of the symptoms of MS are due to the impaired nerve impulse conduction and with an increase in temperature the symptoms worsen in the affected people. Among the various symptoms of MS, fatigue, limb weakness, visual problems, pain and numbness and cognitive dysfunctions are commonly exacerbated when the core body temperature increases.”

I went out today to run some errands with my husband.  I had four places to go on my list. All would be very short stops since I knew precisely what I wanted.  After the second stop, I told my husband we were going to skip one place.

The air was laying down on me like a lover pressing down into me.  This lover was not giving me pleasure but a sense of wanting to throw him out of my bed.

At the second stop, I could feel my legs turn to rubber as I maneuvered my way up the curb and into the store hanging on to my cane as though it was the third leg. We do need this third leg.  Without it, it’s as though someone has taken out two of our legs instead of one. We turn into a puddle of helplessness laying on the ground while people walk around us trying to avoid getting wet.

I sit here with heavy-lidded eyes wanting to finish a project for a dear friend. Instead, I sit here trying to see the screen and wishing there weren’t two of everything, making it difficult to spell.  When I came in the door, I headed straight for the first chair I saw, and it happened to be my office chair.  The table on which my projects waits is maybe 10 feet from me but feels like it’s a mile or more away.
all dayjpgI hate what heat does to me.  I was at a garage sale last weekend, and I turned beet red so that everyone was concerned for me.  The sun turned into something ugly just beating down on me.  I felt singled out by it.  I sat down, and people ran to get me something to drink.  I didn’t have to complain about anything because my face was a dead giveaway.  I don’t like that either.  I prefer to keep my misery close to my chest.

My spin on this:
  1. I got dressed and even though I didn’t feel like doing so, I did so that I could run my errands.
  2. I ran most of my errands which provide me the ability to finish a project or two.
  3. I have the items I need to make dinner.
  4. I did it!
On the downside, there is only one item.  I’m too fricking tired to do anything with anything.
Inside of me, although you can’t tell, I’m jumping up and down and saying, “Good girl. You did everything you set out to do.  I’m proud of you.”  I say this to myself because no one is around to congratulate me.  No one understands what it took for me to do it and what it will take for me to finish what I started including making dinner.
I don’t say this to get people to say, “Oh you poor thing.  If I were there, I would congratulate you.” This is the sort of canned response I get when I complain about how difficult something is or when I speak about the lack of support I get.
I’m here to tell all of you, get over it.  Stop looking for people to give you what you need in the verbal sense.  With or without a disease, you will seldom get anyone to recognize that the little things you do, can sometimes be an enormous challenge.  Don’t expect to hear the roar of the crowd with a standing ovation.  Don’t wait to hear thundering applause and whistles of appreciation.
You do it for you.  That’s what matters.  That’s how you love you and when you do love you, you are willing to do an encore presentation.
For now!  I tell the crowd, (if there was a crowd in my life), “Get the frick away from me!”
I have just now kicked the sun out of my bed so that I can breathe again.

 

Love What I See

blinded_by_fra01000110-d38aphxThings are very blurry today.  Just another day in the life of a person with Multiple Sclerosis.  This is not unusual for people with MS.  In fact, for many of us, this is our first symptom.  There is usually a deep pain behind the eyes along with visual problems.

I take my glasses off.  I put them back on again.  I peek over the top of my glasses.  Then I pull them up so that I can look at a different part of my trifocals.  Nothing works.  The best way to see is without the glasses altogether.  This will pass in a day or two–I hope.

My vision became wacky yesterday while I was visiting a friend of mine.  There we were talking and I kept seeing two of her.  I didn’t know where to look and wondered if she noticed my eyes bouncing around trying to focus on the right person who sat just a few feet away from.

I gave her an exciting visit besides the dance of the jiggling eyes.  We were about to step out back.  She was in front of me opening the sliding door and I behind her, as a sequel to the dance of the jiggling eyes, I decided to drop and dance down on the floor knocking over her coffee table.

I laid on the floor quietly trying to assess any damage.  My baby finger on my left hand was throbbing like crazy but other than that, everything seemed to be okay.  I’m almost certain that finger is broken.  I’ve had it wrapped for about 24 hours or more and it’s not improving.  So I’m headed to a Doctor’s office to see if they can wrap it properly.

Everyone needs a friend like I have.  She sat there quietly.  She asked me if she could look at my head.  She was certain I hit the back of my head.  I had not hit my head.  She looked so worried that all I could do to allay her fears was to smile and tell  her everything was fine.  I did admit to my finger hurting.  She went hunting for bandages, came back with a box of band-aids  and taped my baby finger to my ring finger.  That made it feel better immediately although the throbbing continued.  Yes, we all need and deserve a friend like mine.

I don’t know what caused this fall.  I was standing one minute and the next, I was on the floor.  Although I hate the loneliness of being inside my house almost 24/7, I admit that I’m rather afraid of going out for fear of things happening like this.

Now if I could see clearly, I would feel better as well.

Sometimes, when people are not demonstrative, you can still see the love and compassion in their eyes.  Since most people I know do not verbalize very well, it’s the seeing that becomes my strength through them.  Seeing is important for me.

My Take on This:

We had a great time!  Friendship and love is worth every topsy turvy fall any day.  

I Am No Dragon Slayer

dragonI bet you’ve been wondering where I’ve been.  Well–I’ve been at the hospital trying to slay dragons.  Unfortunately, the dragons have temporarily chased me away with their fire.  However, I have restorative powers of my own.  They are not available at the moment.  I know they are there and I will call them forth when I really truly need them. This problem has nothing to do with Multiple Sclerosis.  It has an impact on the symptoms only.

I have been on the receiving end of a Doctor who is now no longer a Doctor.  He took me and made me no longer me as well.  This Doctor operated on me four times for hernia repairs.  You know, those things that bulge out of your tummy.  It seems that at least one of those times, there was a partial strangulation of bowel.  At least he was smart enough to send me for an MRI which told him what to look for.  He did not send me for tests on the other three.

I knew that I had a hernia once.  I was not made to know, by my tummy, that there were other things hanging out to chit-chat because they were worried about getting strangled.  I would hang out too.  He discovered these hernias on followup visits from the last hernia repair.  I became paranoid about seeing this Doctor.  Come on already!  These were followup visits!  This means they were six weeks after surgery!  Before I knew it, I was scheduled for yet another surgery.

This past year, I learned from one Doctor that my surgical Doctor had his license revoked. The Doctor who told me this told me to look it up.  I did.  To my utter amazement, I found out that my Doctor had been in rehab for an addiction to coke.  The hospital knew about it and felt that as long as he was in rehab, they had nothing to worry about.  Little did they know that he was writing prescriptions for drugs to people who then sold those drugs, pill by pill, at a much higher price than the entire bottle cost.  This was in part, how my Doctor traded his prescriptions for coke.  There were other things he did but I won’t go into it here.

I started to think about it and wondered if I actually had those hernias.  I was told that I could sue.  I’m not a suing sort of person so I waited.  Then I started having trouble with a hernia that was in the exact location of the hernia that I had before.  The one I knew I had. Come to find out, he never took care of it.

The story goes on and on.  He had his demons to slay.  What a waste.  He was the head of the surgical department at this hospital and now look at him.  It’s a shame really.  I’m looking at it from both sides.

For those with us with Multiple Sclerosis, my neurologist told me that it takes 6 to 8 months before you return to presurgical state.  Surgery aggravates the symptoms and relapses you into hard-core MS state from which you gradually recover.  I was getting surgery after surgery and now guess what?   I need another surgery to repair what he didn’t but this time, I must have a second surgeon involved because the hernia is so large that it distends my stomach on the side right underneath my right breast.  It looks like I have a third breast!

I recant what I said in the first paragraph where I said it has nothing to do with Multiple Sclerosis.  It does.  It impacts it.  Misery hangs over me like a cloud at times.  It is one thing or another that has made these last few years so difficult.

My Take On This:

I know that  people often wonder,  how bad could all this be?  Look at her.  She is always smiling.  

This is true.  I do smile.  Why?  A smile is curative.  Laughter is even better.  What is the point in going around picking up a shovel to dig a hole where I can place one foot in it in preparation for death?  I don’t want to die yet.  I still have a lot to do, places to go, people to see, fences to mend, and lots of joy and laughter to share.

I don’t want to be remembered where people say, “Well she’s in heaven now.  All her pain has ended.”  No that’s not for me.  I want to be remembered as someone who kept on living the life she was given instead of the life she longed to have.

I also feel that by example, I leave a message behind.  That life is worth the effort it takes to have a good one.  I also feel that I was given this life to teach others how to handle a difficult life not only with having the disease of MS and Dystonia, but in dealing with the additional problems that crop up on the way to heaven, or at least to a peaceful and needed rest.

dragon2My take on this is despite the dragons that come my way who brutally attack me, yes; I may succumb for awhile due to lack of strength but not because of lack of fortitude.  I am a fighter and I also believe that these things have something to teach me.  I learn from this and that.  I am no dragon slayer, but I am a fire-breathing dragon survivor.

 

 

 

That’s What It Is!

34-social-media-truths-in-a-nut-shell-50-728I came to the realization today that I’ve had an utterly unproductive week this past week.  I didn’t write, I didn’t produce any music, and I barely looked at my oil painting that I’m working on.  What gives?

I was caught up with trading this week.  A lot happening there.  We received some worrisome family news.  Something to worry about there and continues to be worrisome.  Still these things don’t explain it.

Wait a minute.  I have been doing some gardening.  I can at least say that.  What little I can do.  Come to think of it, perhaps I know what this is about.

Okay so we all know I have Multiple Sclerosis however I have several other problems to keep my MS company.  MS doesn’t like to hang around by itself, or so it seems for me.  My MS likes company to keep it warm and fuzzy at night.

I don’t want this blog to be about aches and pains and focusing on the negatives, but what can I say, there is nothing positive about having a shadow of MS hanging around all the time, 24/7.  You want to run away from it, from your body but true to form, MS wanting companionship would more than likely chase after me.

Yep, I’m not feeling well.  There’s more to it than that and it’s nothing to do with MS so I won’t go into the details of it here.  However, it does exacerbate the overall health of an MS patient who is already beleaguered with a myriad of symptoms with no relief in sight.  When something else comes along to join the party, everyone is having fun except me.

That’s what it is!

About Choices

cupcakeIt’s birthday time!  Two of my grown children have birthdays this month.  Although they are years apart, their birthdays fall just two days apart.  I love my children, however there is a part of me that is resentful of complete lack of communication with me.  Then when they do, I wonder when they will get to the point of what they want or need from me.

Isn’t this terrible of me?  No, not really now that I think about it. They have trained me well.  On the other hand, I have trained them well.

What is it about boys or at least my boys, who make choices based on their own needs and not on others?  Where have I gone wrong?  There is an excuse for one, but there isn’t one for the other. Then again, it is all about choices, so there isn’t an excuse for either of them.

No, I refuse to give them their sex as an excuse.  I know of loving sons to their mothers.  Don’t get me wrong.  I’m not saying they don’t love me, but they are not loving towards me, at least not very often.  Yet, when we do get together and talk, it’s a wonderful conversation on both ends of the telephone wires.  We can’t get enough of each other and the conversation lasts for a long time.  It’s difficult to say good bye.  “You hang up.”

“No, you hang up first.”

I’m going back and forth here.  I blame them, I don’t blame them.  I blame me, I don’t blame me.  Is there any blame at all?

It’s about the givers and the takers, I think.  I’m definitely a giver.  My kids are takers, and yet–sometimes (rarely) they are givers.  I know that they are givers in their own little worlds.  In their circle of friends or family, they are definitely givers.  They are me personified.

But what about that saying, “What goes around comes around,”?  Why hasn’t it come around?  Are children the exception?

I know this is a quirky article, but I’m a bit tired.  Scratch that.  I’m very tired.  It’s been a difficult week and more difficult weeks are headed my way.  I feel like running to the grocery store to put in supplies to weather the storm that lies ahead.

Stress and Multiple Sclerosis are not good bed companions.  They are not even good commuters on the train companions.  Stress tips the balance is a different direction other than ours. Symptoms that were quiet rear their ugly heads.  You try to squelch them but even if I stood upside down in a yoga position day in and day out, ugly symptoms will just push me over until I fall flat on my face from that position.

I was a nonbeliever that stress could impact illness.  Time after time, I’ve been proven wrong.  Even good stress is bad stress for people with MS (Multiple Sclerosis).  Planning happy events is stressful.  So good and bad stress all amounts to the same thing for us.  We get ill.

Now here is another thing.  First of all, we are ill.  How does one become more ill than ill?  Sick is sick right?  Nope, you can get sicker.  You go from using a cane or a walker, to having to use your wheelchair.  I’ve had to do that this week.

The kicker is this.  You have a disease that makes you unwell.  Then you get other physical problems that no one in their right mind would want and you not only have to deal with all that entails but you also have to deal with the stress of it all.  So it’s like this snowball that is rolling down a hill and getting larger by the foot.  You’re sick, then you get sick, then you get sicker because the stress of being sick and then sicker brings it up several other notches.  What a mess!

What about these boys of mine?  It’s all about choices.  No one is to blame.  Unfortunately, the choice they make right now is something they may regret later on.  I’ve already told them this but this isn’t something you can tell someone.  This is something they have to experience for themselves and of course, it’s too late.

Sigh….

sad-lonely-danboard-facebook_cover_timeline_photos

In The Night

maxresdefaultI come to you in the night, restless, sleepless and in pain.  Difficult days have passed and more to come.  There is no end in sight.  Last night I stayed up with the man in the moon and went to bed with the sun rising.  Music got me through that night.  I composed and the pain became a part of the rhythm of the song.  At least it made sense in this venue, the throbbing keeping tempo.

Tonight, or should I say early morning at 2:58 a.m., there is no music in me not for lack of trying.  This time pain became the focus and nothing would stand in its way.  It wanted center stage and got it.

It amazes me how much we can take.  You have to take it.  It’s not going away.  It’s a part of our lives.  Those of us who are fighters, cook with it, clean with it, pursue hobbies and work with it.

Those of us who are not fighters, succumb to it.  Lie in bed with it.  Curl up without getting dressed all day.  Let the house go and enhance their losing battle.

Vertigo, seeing double, unable to control the movement of ones eyes, spasms in legs, arms and hands.  Confusion, incredible fatigue, narcolepsy tremors in hands and head.  Leaning body and head and–pain, pain, pain.

Even if you’re surrounded by hundreds of supporters who love you, there is no one to talk to.  You can try to explain, at least in the beginning, but people just don’t get it.  Now you lock yourself inside your head and don’t bother with explanations.

You quietly sit and listen to people’s chatter while you urinate into your adult diaper.  No one knows but you.  You excuse yourself and take your cane as your companion to the bathroom to clean up and change.  You return and continue to listen while a myriad of other things are happening to you that no one is aware of.  You’ve learned to mask it well.

My mask is my smile.

My take on this:
The reason I place this on the bottom of my blog is because the inside of me pours out while I'm writing.  I'm not really all that aware of what I'm saying or where I'm headed each time I sit down to write.  I'm not an itemizer of what I've done during the day.  I've read too many blogs like that and quite frankly, I find it boring.
When I'm done writing, I sit back and read what I've written.  It is at this point, that I give the blog a title.  I think most people first have a title and then fill their blogs with something related to it.  Not here.

It is also at this point that I can read what I've written and decide, should I say something about what this author has spit out or not?  

So, my take on this---

I don't often write an entire blog that feels so negative.  This one came out that way.  I've had too many sleepless nights in a row.  However, I know me and I respect me.  I respect the person I've become and the strength that I have learned to develop in order to keep myself out of my wheelchair 24/7 and the myriad of other things that I do each day to keep my mind active.

One thing that struck me was this thing about "no one knows".  This is true.  They know but they don't know.  In order to show compassion to us they bring the focus back around to themselves by mentioning that they too are tired which is completely just the opposite of what a person with MS wants to hear.
No, you do not feel as I do.  It is my ambition to make you understand.  To teach you about this disease in the most profound way by showing you, in detail, my life through my words.  It is my ambition to talk about this to groups of people and educate on being a solicitous listener.

We need people to talk to.

For me, loneliness is the worst part of this disease.

 

Heated Up!

unusual-shape-fruit-vegetables-16__605The days have turned beautiful here in New Jersey.  I stand at my door and hear conversations of couples out for a walk,.   I watch joggers run, some apparently new at it and others who look like they were born to run.

I have attempted, several times to go outside and start my vegetable garden.  I have laid out the area to be run through by a tiller like grating carrots in my kitchen gadget.  However, I don’t own a tiller so I lift off the grass with my small hand spade inch by inch.  I then use my, gadget, that looks like a 3-prong fork and claw at the earth like a worm.

I can only work in my back yard maybe half an hour before I know that it is time to go indoors to cool off.  If I don’t, I will turn into a puddle laying on the ground unable to get up.  I don’t want that to happen while I’m alone.  This is known as heat intolerance common to Multiple Sclerosis.

Multiple times a day, I go up and down my 3 steps   Every one of those steps cause me great pain due to spasticity.  My legs, due to spasticity don’t work like everyone else.  What I have to do is swing my leg to the right or to the left and pull myself up.  The leg stretch that this causes, responds with a nice stretch, yes, but it also causes a lot of pain.

I managed to plant my carrots with my husband’s help.

My take on this:

What’s important to note here is that at least I do get things done regardless of pain or heat intolerance.  I almost view a challenge as a method of going out and fighting against myself to be myself.  Does that make sense?  At the end of the day, when I’ve done what I set out to do despite the challenges or pain, I’ve won one small battle.