(Updated) Digressing from Needing a Vacation: Hot Topic

Update:  Every once in a while, I catch myself in such a badly written post, I have to do some editing.  While I would not pronounce this perfect, it is more readable.

This blog is supposed to be about needing a vacation, but it digressed into something else, which I think needs to be said.  And hopefully, it will help you understand someone in your life that suffers from Chronic Illness.

Warning Before Reading This Blog Post

The hot topic of suicide is mentioned in this blog post.  I do not approve of suicide, nor am I being judgmental toward anyone who has ever had the thought or tried the act of suicide.  These are my personal thoughts, and I am in no way responsible for anything you or a loved one might do.  I have never, nor do I ever want to do such  a thing.  But the word is in here more than once, and I  want you to know; just in case it is a word that will set off anxiety or anything else in your life.

What I Need Is ... a vacation

Right now, I absolutely need a blog vacation:

I have already slightly indulged in it without the guilt!

A willingness on my part to only write 

only that which can be written quickly without angst
is my mantra for the summer.

Please indulge me, as the summer progresses,

And forgive me if I'm not often here

With an encouraging word. 

Wish I was there right now, but I'm here at home.
This picture was taken at Amelia Island, a few years ago.

I need it to get me back on track if that is possible.

 I really don't know for sure I can gain ground physically,

Because I lost a lot this past winter.

 But, I am going to try to not worry about it.

Instead, I am continuing to do a little more gradually,

which is quite exhausting.

  

Well  perhaps, you don't know how this fatigue thing works, 
and I'm not speaking of the kind of fatigue fairly healthy people have.

Moreover, I forgive you if you cannot even imagine what it feels like 

to have a plethora of symptoms that mount and wane, but it feels
kind of like having influenza all the time and you can never 
quite get over the aches and low, draggy feeling.
And that is only part of the symptoms
 FM - CFS patients deal with.

I would never want anyone to suffer

 through these stupid, hard to explain symptoms 

We Fibromites and ME/CFS people have.
It is by God's Grace and Mercy, I am not totally  mentally disabled 
by the frustration of it all.  I had been in pain for 30 years or
more before I  ever knew I had syndromes.

If it were not for God, I admit that I would probably 

give it up -- everything.

Please don't worry, 

I am not depressed or about to

do anything like suicide.

I know what that is like for family.  

And even though I think the Lord probably forgives those Christians,

Who have momentarily lost their minds and do themselves in. 

I do not think it is right, or fair, or what He would choose for me,

Or anyone for that matter.  It makes me sad to think of it.

But sometimes, I do get very tired of trying

To be healthier,

To keep a strong heart and mind,

Which I know is a gift from God.

I cannot do any of this alone, 

And for those of you who say, 

"God is a crutch!";

I say that He is always Who I have needed, even when I was healthy.

So if you think you don't need Him,

You better think real hard about Eternity.
I am being honest and politically incorrect here, because I care.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I am sorry this is such a long post, 
but the next part has relevance in getting to my main points.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Yesterday, I went to the eye doctor.

The whole morning started badly, brought on by poor sleep,

and having to get up when my body only wanted to rest.

I couldn't find my keys, because I had put them in my Bible Carrier.

They were not in my purse, because I have not driven for

?????????????

many weeks.  I don't remember the last time I drove. 

I know it has been more than a month.

Anxiety ridden, I got to my appointment.

(I called first -- the receptionist was kind and gave me a later time.)

By the way, for all my dear friends who would quote

Philippian 4:6-7 to me.  

I have known this verse by heart, since I was twenty,  

And it has carried me through many a moment.
I know He guards my heart and my mind.
The Holy Spirit has spoken to me when my heart was broken.
Not in an audible voice, so anyone could hear it, but He has spoken
to me when I least expected it and I am thankful.

The uninitiated often do not understand that
there is an anxiety caused by the broken brain and nerves, 

That will not be squelched.  

I have learned to deal with it.  I know how to visualize, 

contract and relax muscles,

breathe slowly, hold my breath, and breathe again.

My amygdala has been rested,  retrained, and upset again.

I have a flight and fight response that is all ready to go;

but I cannot jog or run anymore to help reset it.

I cannot dance like I used to.

My physical body is broken and battered by illness;  even though,

I worked hard to not be caught by a body that kept me
 from living an active physical life in my more mature years. 

Unfortunately, it caught me earlier than I could have possibly expected.
But, I had fought it, because I knew it was in my genes.

However, I did not expect it, because I exercised and ate very healthily;

also, I  kept my weight down.  

But sometimes,
People get sick anyway.  Oh darn!

That's not fair!

Back to the eye appointment...

My eye appointment was like no other I have ever had:  I was up and down, 

In a chair and out of a chair,

down the narrow hall and back to the same room,  several times.

I never knew so many machines for checking your eyes existed.

And they want me to come back in six months -- really?? 

Maybe, I should call and ask if I have to do all those machines again.

It was way too much
 for a ME/CFS - Fibromyalgia patient to go through 

without someone to drive him or her.

What I Wanted to Do after the Eye Appointment

I had planned the things I wanted to do when I was out by myself in the car.

Ha!  Didn't happen.  After that appointment, 
I didn't look at flowers to plant or go any place, 
Except 

The three most necessary .

I got a grilled chicken sandwich, real lemonade (needed a treat).

Thank you Chick-fil-A.

 I have to put a plug in for them, because they helped pay 

For our eldest daughter's education through their 

Winshape scholarship program, which believe me she earned.
But, it was also God's gift to her. 

Sometimes, I have to do a little wave my wings, mommy fluttering.

 With a grateful heart, I went to the new Chick-fil-A restaurant;

and I experienced their typical good cheer and kindness, 
which is comforting.

Then, I went to my pharmacy to pick up my prescription,
 but ended up with more frustration -- due to my own mistaken idea my doctor's office had called in my colonoscopy prep.

At least, I got the pills I had run out of.  My thyroid will appreciate it.

And then I went home, driving while upset -- never a good idea.

I had not been so anxiety-filled in a long time.

That was when I had the "driving off the road thought."

Remember, I told you I am not suicidal,
 but there is an Enemy out there, 

who would like us to be thinking and doing wrong things.
Should you not believe in the supernatural,
 I'm sorry, because it is there.  
God is real and so is the Enemy and His cohorts. 
 I really don't like saying the name.  Read C.S. Lewis and the Bible,
then you will know what I am talking about.  
I would much rather talk about God.

Anyway, as I drove home,
 This was a simple run-down of my thoughts.

I am so sick of feeling like this -- it never ends. 
 I can't do  anything.  I could run into one of those trees.

Oh, it probably wouldn't kill me.  I would just hurt worse
and, God would not like it.  
I had a picture of the air bag inflating, as well as 
being laid up in a hospital in pain.

How am I going to heaven, and say I did it to myself to Jesus?
Nope.  I'm not going to run off the road.  
It would not be fair to my family.
That was the gist of my thoughts.

Since I am the very near relative of two someones who committed suicide, 

I want to tell you that it is a horrible thing to do to your family.

Second of all, I want to tell you that 

your child should never see you  threaten to commit suicide.
Even if you don't ever do it,

She/he will not forget:  it will always be there in his or her mind, 

just waiting to be jolted back into present memory.
I know that memory can come back years later in living color,
because I have experienced it.

A word to you who have had 

the suicidal thought go through your mind...

It is not unforgivable to have the thought, 

nor is it unforgivable to have voiced it, 

or to have started to go through the act.
But I think

you need to ask God's forgiveness, 
your family's forgiveness, 

and most of all 

you need to forgive yourself.

Moreover,  it does no good to dwell in the past.

The past is the past.  
Done.  Gone.  Move on.

Trying to brush it under the rug and hope everyone will forget

did not work for the family I grew up in.  

I knew and I don't know how I knew,

that you never talk about 

Family Business.  

Well, it is not just business.

It is life.  And I have a theory that all families 

are at least slightly Dysfunctional,

Because I thought, we were a very normal and good family,  

 well, most of the time I thought that.

And we were, but...
is there really any family that is perfectly functional?

So to move on, it has to be dealt with in the family. 
If that is not possible for whatever reason;

with God's help you have to do it yourself.

I advise moving on whether or not other family members are able to; because it is unhealthy to be living in the debris of their emotions everyday.  

I am not talking about withdrawing one's love, but you cannot live someone else's life.  You cannot force someone else to change.  
That is what I mean by moving on.
That is why it is so good to have a counselor to talk to,
 because it can help you to get through things that are devastating to you mentally and emotionally.

All of this, and

it was just a simple trip to the eye doctor, right?

Now, I will share my sweet husband's
 understanding and kind reactions to all of this.

♥♥♥♥♥♥♥

He did come home from work to check on me. 

And after I had a nap, 

He took me to get the makeup I had meant to buy that day.

On a second trip that evening, he took me to McDonald's 
for a hot fudge sundae.

He left a TV baseball game to do that.

Wasn't that sweet?

Courage to Leave the Room

Fibromyalgia and Chronic Fatigue Syndrome are energy drainers.  People who have FM and CFS do not have bodies that produce energy as quickly those who have healthy bodies.  Therefore, even when you are feeling good, you have to remember to pace yourself.  Listen to your body when it starts telling you you have had enough of an activity.  If you have been sick for very long, you usually sense when it is time to stop whatever you are doing.

However, I know it is often hard to just stop.  If you are in the middle of an activity, you want to finish -- at least, I do.  Therefore, consider yourself in the midst of retraining, which will take as much persistence as the goal to complete a task.  A good example of this is my return to choir rehearsal, which is something I want to do, but I often am  without the energy to be a regular member of the choir.  I am blessed to have developed good musical skills over the years, so our minister of music is happy when I can be there.  However, when I am there I often give out before the end of choir rehearsal -- even if I was careful during the day to save energy for it.

So what do you and I do if we give out during our activities?  In my case, my outside activities are volunteer, and the other participants "know" I am ill.  Supposedly, that should make it easier for me to do what I need to do to be able to do, which is rest;  however, my pride gets in the way.  It is embarrassing to get up and walk out of the room before the last song is sung.

Last night, I arrived at choir rehearsal early, which eliminated the stress of feeling rushed.  I was able to leisurely get my music and my rehearsal format, then find a seat.  I enjoyed chatting with other choir members as they walked into the room.  --so far, I was alright--  I  listened to the devotional and sang through the first few songs.  Then, I felt it:  panic attack or chronic fatigue.  Which was it?  Usually, I know;  however, it was mild;  so, I stopped singing and tried to relax.  I felt like I needed to leave the room and go home.  But, I was getting closer to the end of the hour long rehearsal, so I stayed, which was a mistake.

My body was telling me, "Rest, Deborah."  And like so many other times in my life, I didn't have the courage to leave.  I was too worried about what other people would think.  Moreover, I like to finish what I started, but I cannot always do that in the allotted time.

Image Courtesy of [Sattva] / FreeDigitalPhotos.net

For those who have read Got All My Marbles?, you are familiar with counting marbles for the activities, that you do during the day.  When I do remember to move my marbles from one bowl to another, it is an easy way to pace myself.  It is a visible reminder, I need to slow down or suffer the consequences, which could be anything from disturbed sleep to having a flare-up.  I thought it might be enlightening to count my marbles in what I thought was a not too heavy day.  

1.  Make brunch  2.  Check email  3.  Read friend's blog, comment  4.  Check social media  5.  Respond to comment on my blog  6.  Write blog post  7.  Send blog post to various social media  8. Shower, Dress  9. Put on makeup, Blow hair dry, style   10.  Scrape out peanut butter jar and eat, fix ice water and waffle, eat on way to rehearsal  11. Hunt for umbrella, secure house, walk to rehearsal in drizzle  12.  Choir Rehearsal  13.  Walk home
14.  Scrub and cook potato in microwave, cut leftover roast, get out vegetables, heat my  meat and vegetables, fix bake potato -- finally sit down and eat supper.  15.  After an hour or so break, wash dishes by hand, wipe off counter, and shine sink.     

Image Courtesy of [Maggie Smith] / FreeDigitalPhots.net

It's obvious I went over 12 marbles, and as you know from your own daily lives that does not count the incidentals during the day.  Some things, don't seem to take as much energy, but I think you would be surprised how much thinking and emotion figure into the equation.  That's probably no eye-opener for you, but I think many of our healthy friends and family don't understand how all these things add up to affect us even into the next day;  nor, do I  think our healthy doctors understand how we feel.    

So I didn't walk out of the choir room when my body was telling me go home.  After last night, I think that is going to change.  My choir director, who is also my husband says do what I need to do.  He knows my work at home is affected by everything from overdoing to weather.  

The point is you and I are the ones responsible for doing what we need to do, so that we do not throw ourselves into a bad day or a flare-up.  Even then, when we are pacing ourselves, there are often outside factors that affect our energy that we have no control over.  I encourage you to plan ways that you can rest or back off when you need to.  If you are able to go to the zoo, find a bench or a table in the shade to rest.  Don't be afraid to tell your family that you need to go back to the car to close your eyes.  Sit down on a bench in the grocery store or use an electric cart on those days you are extra fatigued.  Forget about embarrassment.  It is not other people's jobs to judge what we need to keep our bodies functioning.  However, it is our privilege and responsibility to exercise self control and make good decisions.  This will help to make you a better family member, neighbor and friend.  It will give you more energy to use in serving others.  To lead more satisfying lives, FM/CFS patients need to incorporate the techniques that help us pace ourselves in a realistic way.