Growing Out of CHAOS

1.  I have to confess, I am procrastinating on putting up a Facebook Group.  There are already so many.  Or I could do a page.  To be honest, I just want to do this right.  And I know I have to start somewhere.  I have been trying to spread out the spokes of my circle, a little longer, a baby step at a time.  Plus, I am trying to get my house out of moving chaos too.  
2.  Speaking of moving CHAOS, I did not totally listen to my body.  I did for several weeks, then I got extra determined, because I was expecting overnight guests.  I got so into unpacking, unpiling, and organizing,  that I overdid -- of course -- that is my nature.  Learning to balance life changes is different than my former way of doing things.  I am learning to clean better and easier -- meaning I do it everyday, not waiting until it piles up.
3.  I thought I was going to have to wait to restart my series on going through the FlyLady steps.  I thought I had to get my house clean for company first.  However, I need to tell you how I have been doing what I have done to get back into a livable routine, which still could use some polishing.  

There's that busy bee again, concentrating on the flower
 that hasn't opened completely yet.

After I had hip replacement surgery last December, my main effort was focused on getting me mobile again.  I followed the doctor's and physical therapist's directions.  I did the exercises.  And I was gentle with myself, but also firm -- I used my walker, until I was strong enough to use a cane.  However, if I had a particularly painful day or I felt wobbly, I didn't feel ashamed of going back to the walker that day.  I did not want to go back into surgery, because of a dislocated joint, so I was very careful to follow the after surgery protocol.

After the surgery, I had to spend time learning to take care of my own personal needs, such as bathing and getting dressed.  That was my main focus.  Just getting a shower was exhausting, but it felt so good!  I have kept my shower chair in the bathroom, even though I have healed from surgery, because it is great to have on the days CFS and FM have drained me of energy.  I have a sturdy little basket that drains, which I stick the head of my shower sprayer in while I soap up.  Most of the time I don't need the shower chair, but what a blessing to have it when I do.

After a couple of months, I began to feel comfortable doing things in the kitchen if I sat on a stool.  We have a galley style kitchen, and the walking back and forth was very irritating to my healing leg.  We bought a rolling cart, so I could put items I was going to use for cooking and roll them to one place. I did not hesitate to ask for help if I needed it.  I put the kitchen information in, because as thoroughly as I thought I had read the information I brought home, I missed reading the stool and rolling cart information.  I was struggling every time I tried to work in the kitchen, until I got my cart.

Finally, I have found some of the things I learned from having hip surgery as helpful tools to use in pacing myself, so I can live a better paced life to shorten the effect of post-exertional malaise, so common in CFS and FM.  I mentioned three of those things today:  sitting on a stool as I work in the kitchen, using a cart to economize on movement in the kitchen, and continuing to occasionally use my shower chair.  God bless you as you find the things that help you live the life you desire.

***Disclaimer***  Do not consider what I say as qualified medical information.  I am not a medical professional.  I am only sharing out of my own experience and information I have read.  You should contact qualified medical professionals about medical questions or needs you have.

One Lesson Learned, Two Dozen to Go?

How many of you have seen the movie Julie and Julia?  I need to add this to my list of favorite movies; for each time I see it, I enjoy it and catch something new.  I always get a kick out of the way Julie addresses the readers of her blog, so if I call you dear readers from time to time,  please indulge me and know that you are dear to me, and I cannot think of a more apt term to let you know I cherish you.
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Two illnesses that often walk hand-in-hand:  Fibromyalgia and Chronic Fatigue Syndrome

Courtesy of [Stuart Miles] / www.freedigitalphotos.net/  

 So, Dear Readers, I think I am finally learning  how to leave well enough alone.  Those of you who are learning to balance your lives, know exactly what I mean.  When you are extra fatigued and about to walk two steps back instead of one step forward in your health life, it is time to say, "NO!".  And I did mean to shout, because I have over-done too many times.  

When one has CFS it is a bit like walking a tightrope.  If you lean too far in one direction, you are going to fall off:  you might even find you are unable to train for a short time, because of an injury.  With CFS, the energy principle is in action.  A healthy person uses energy, rests, and gains energy;  however when one has CFS, it takes longer to replenish that energy than before one became ill.  And for the naysayers out there, who are quite likely saying, "Get real!  You don't look sick:  you just need to exercise more or you're lazy.";  I say, "Obviously, the only way you could possibly understand would be to walk in my shoes; and then, you would be devastated."  How I would like to be able to clean house in one day.  Or take a long hike.  It sure would be nice to hit the tennis courts.  And I would love to be able to visit my grandchildren anytime I can pick up and go, but I have to store my energy like squirrel stores nuts for the winter.  If I am not careful, I will end up with weeks or months that taking a shower feels like running a 5k.

Now, that I have that out of the way, I will get to the point.  Sometime very early this morning, I was contemplating improving/decorating my blog, but my previous experiences came back to me.  When I start messing around with the templates, I have to change font size, etcetera.;  and I end up spending a ridiculous amount of time and energy messing with my blog design.  It seems like one change leads to another.  I heard the voice of reason in my head, "Remember what happened last time.  Don't mess with it.  Leave well enough alone. "  It was about 3 in the morning, and I felt like my eyelids weighed 5 pounds.  My body ached all over.  I needed to relax, but I was so wound up from all the work I had done in the house, that was not about to happen.  I have noticed that my coordination is affected when I am that tired, and my brain is in a fog, and I my actions don't always match up with what I mean to do.  It's complicated.

I did not write this to complain.  I just want you to know you are not alone;  and I want the world to know that people with chronic or invisible illnesses do not have these illnesses because they are malingerers or hypochondriacs.  These are real illnesses.

And finally, I would like to hear from you.  There are many invisible illnesses, that are chronic, and change one's life forever.  If you hate posting comments on blogs, I will soon have a Facebook Page up and running.  God bless you and give you peace.

Deborah

P.S.  I will try to get the FB group up tonight.

         And for those of you who might be wondering, I am going to get back to the flybaby series
         of blogs.  I will catch you up on what I have been doing to get out of my moving mess, and I 
         still want to get all those daily routines down.

Leave Well Enough Alone

Do you see what happens when I get over-tired?
Sometimes, I write bad poetry.  When you
over-do, does it affect your attitude?

“Leave well enough alone.”  That ‘s a phrase with which I have some difficulty.  I just don’t know when to leave things alone.  I don’t know when to stop changing them  and  perfecting them.  That’s why, today, I mucked about changing the templates  on my blog;  then, I changed it back to the original.   I suppose I could count it as a learning experience , because I changed templates, fonts, and I learned how to tile my own pictures as a background;  however, I ended up getting overtired and frustrated.  And, I wasn’t sure anyone would like the tiled picture of an orange butterfly on a zinnia over, and over, and over again.  And DH said the other was easier to read.  I agreed. 

The Fibromyalgia and the CFS/ME have kicked in again, and I have so much more to do.  I’m expecting company.  I should have been spending more time cleaning house.  But no, I had to play with my blog, because I’m obsessed – Nah, well maybe, a little obsessive.  Because I am a perfectionist—Ahh—now, I’m, getting somewhere.  Of course, I ended up with a huge case of brain fog.  

 It’s crazy.  I can write;  however, at this moment,  I cannot focus enough to read anything lengthy or even slightly technical.   Therefore, I am afraid this blog post may sound like the demented ramblings of  a muddled mad-woman.  I’m actually writing this blog post with  the inside of my head feeling as if it might burst.  I don’t really have a headache:  it feels more like a brain ache.  Either my brain is bursting, or there is a band tightening around it.

The sensible thing would be to go to bed right now;  but tonight, I will probably lie there waiting for the sandman to do his job:  and those random thoughts about all I did today and what I need to do tomorrow will intrude.  It never ceases to amaze me how my totally fatigued body fights sleep.  IT’S NOT RIGHT, but it is what it is.

I'm Goin' to Go to Church Today

This is going to be a short one, but I have to share.  And I'm going to ask you to pray for me, because this is a special day:  I'm going back to church again.  Yes, that sounds odd for a committed Christian and for minister's wife;  however, I have been very ill.  I have tried, when I had short remissions, but my body would not cooperate;  and I could not keep up the activity.  Also, I have had a psychological block, a phobia about going there.  Agoraphobia -- fear of the marketplace, basically fear of being around a large group of people.  Moreover, because of Fibromyalgia, it is easy for me to get over-stimulated, which leads to feeling overwhelmed and brainfog..  The thing is I have loved going to Worship my whole life, but then I got side-swiped into not being there.  I have always felt guilty about that, until God showed me I didn't have carry around an extra load of guilt.   He is healing things in my life.  Today is a new beginning.  I pray I will be able to balance my energy, and not fall back into total exhaustion.  I don't think this is a remission.   I am in a little less pain, and I feel much stronger, because I have been more active since I had my hip replacement in December of 2011.  

Right now, my eyes don't want to completely open up.  I can hardly read what I wrote.  But, I am showered and dressed, and I have my makeup on.  It's 8:30 A M.  Hallerluyah, as a friend of mine says.

Hebrews 10:24-25

And let us consider one another in order to stir up love and good works, not forsaking the assembling of ourselves together, as is the manner of some, but exhorting one another, and so much the more as you see the Day approaching.  New King James Version (NKJV)

A new beginning...
Again__

Breezes of change blow, and

       I know it's my time

           to surpass the limits of this weakened body.

More than a body, easily spent,

a fogging brain losing focus...
I am still me.

My spirit growing,

                seeking God's present purpose
 for my life...
Happy...

                  I am content                                                                                  with each small step
     leading me closer to His will.     
Deborah Lynne Bolton  copyright 2012