Sunday, September 30, 2012

Pay Attention to the Stop Sign

There are two sections to this blog post:   1)  Update on my flare-up and how I'm managing it so far;  2) FlyLady Day 2.  

My idea to keep on moving, but less than I was before the flare-up, seems to be working.  I still need more sleep than usual:  I actually fell asleep in my recliner this morning after getting up.  I had not even eaten breakfast.  So I missed church, which I don't like;  but I guess I made my choice when I went out with my Sunday School class last night.  However, in general, this flare seems to be improving, or maybe, I am just managing it better.  I have cooking supper now -- an easy one, but not a microwave meal.  Also, I am focusing on important things on which I was getting lax.  I have organized my medications and supplements into their weekly container, because I am not good about taking everything if I don't stay organized.  I have never liked taking meds, but I feel better if I take care of myself.

I did Day 2, which was getting dressed to the shoes.  I even used lace-up shoes;  and I chose old-fashioned sneakers, so I didn't have to take them off every time I sat in my recliner.  The shoes with the big soles are not comfortable for me when I'm reclining, so I usually wear something I can slip on and off.  I will shine my sink before I go to bed, preferably after the kitchen is cleaned.
And I have 2 post it notes to remind myself.

A car can only go in one direction from here.
Hmm...kind of like my brain.
Now, for the thing I didn't like.  I skipped ahead to check out Day 3.  And I decided to link to the suggested site. I could not seem to reset my password;  and then, I remembered why I quit using it.  It was just one more thing to read or to comment on.  Give me a break -- stop sign time.  When I get overload, I start getting befuddled.  If I don't say no to myself, I get brain fog;  so, I will look at the daily hints, etc.  on Facebook or, or read my email, but that is it.  By the way, about the email.  If I have several FlyLady emails I have never gotten to, I delete them.  I do that with other batch commercial emails too, unless I am interested and have time to read them.  It's not worth it to let email sap my energy.

P. S.  A positive note about Flylady emails is the testimonials and notes from the Flylady staff.  I have been inspired by reading these, but I do not do it all the time.  You have to decide what is comfortable for you, if you go down this path.

Saturday, September 29, 2012

A Fibro Site for Men

I got all caught up in writing and I forgot to mention a website I found.  It's a forum for men who have fibromyalgia.  My understanding is wives and girlfriends are welcome:  there is a group for them.  Also, women who have fibromyalgia are welcome.  The people there use pseudonyms, so you don't have to feel strange if you are uncomfortable with people knowing your real name.  There are also couple of locked forums for Men Only.  That is totally fair.  Some things are too uncomfortable to talk about with the opposite sex listening in.  Right girls?

My communications with people on have been encouraging and friendly.  Please read the instructions from the moderators before posting.

Disclaimer:  If anyone has a bad experience on this site, that is not my responsibility.  I am only a user of the site, and I can only recommend on the experience I have had so far.  I have had nothing to do with setting up Men with

Got All My Marbles?

Today, is Day 1 of my 31 day challenge.  Is anyone going to try it?   I thought of calling it Deb's Adventure's in Flyladydom, which I thought would be a separate blog.   However, I haven't done that yet, because everything I do affects me.  So, how do I separate the 31 day challenge from Learning to Balance Life Changes?  It seems I am always having to learn something new about myself: even more frustrating, I often have to start all over again.  At least, I learn different approaches to the same problems.  That's the whole point of this blog:  encouragement, knowing you are not alone, thinking of new ways to do things, and even challenging one another not to give up.  

So, I cleaning and organizing our lives will stay here, because it is more difficult when you are ill and fatigued.

The thing, that I am learning now, is not to let my muscles waste away when I have a flare.  There is a tendency to sit or lie down all day with flares.  I have done that before, and it is counter-productive, because I have to go through the whole baby step process from bottom up when I feel better.  I would love to hear if other people have experienced this, because I have been experiencing it for over 15 years.  Every time I let myself go into sedentary mode it is like I am recovering from a long convalescence.  I have to deal with being too weak to do anything for more than five minutes.  I get cabin fever from being in the house too long or I retreat back into agoraphobia, and going out becomes traumatic with panic attacks.  I like it when I feel normal, well, almost normal.  And that does happen, but it doesn't last, especially if I spend my marbles unwisely or use too many spoons.

Now, I am going to explain the marbles.  

Friday, September 28, 2012

Challenge - 31 days of FlyLady

It hasn't been too many days since I talked about how to change habits.  Are you working on yours, one at a time?  Or maybe, you have traveled over to FlyLady's site and started applying it your situation.  Many people have done that:  there are even men catching on, either because they have seen how their households have changed because of a flybaby spouse or flybaby friend.  Some people are bachelors that don't want to live in chaos or have someone in to clean.  And then, there are guys that think it's too cute, so they would not touch it with a ten foot pole.

This is how I look at it from the point of view of someone that has a chronic illness.  I know I would be happier with my surroundings if I could get the FlyLady system down.  If the things that need to be done were habitual habits, I would not have the clutter that can contribute to depression.  Since I have used Marla Cilley's methods in the past, I know they work.  However, I have never been able to get through all 31 days of the babysteps.  I  have been able to apply various aspects, but never been able to follow a daily morning and before the bed routine.  Maybe, that is my own stubbornness.  More likely, it is because I did not try FlyLady until I had been sick for many years, because I was able to keep my house clean.  And, as so many of my readers know, the day to day things we are able to do are affected by our illnesses, which can cause havoc with a routine.

I want my house to be uncluttered everyday.
Yes, my outer house I live in, as well as my inner being.
I thought about starting a new blog for the experiment I want to try.  However, the premise of this blog is balancing changes in our lives.  The changes brought on by chronic illnesses are overwhelming, and dealing with fatigue and pain is a constant factor in so many lives. I lost many of my good habits during the first 11 years if my illness.  I could no longer  maintain all of my good life habits on a regular basis.  I tried, but it just didn't happen for me, except on a sporadic basis. 

The experiment I want to do is going through FlyLady's 31 days of Beginner BabySteps and documenting the ups and downs and my reaction to the process.  I will have interruptions and breaks that come.  I am sure of that.  But I want to get through the whole 31 days.  I am going to apply this to myself, not try to be a carbon copy.  There may be things I cannot do, I am already doing, or I need to apply to a different area in my life.  Men, this is where you come in.  Do you think you could apply FlyLady's techniques to your garage, your spare room, your storage shed, your office, or some other area of your life?  I have looked for an equal men's site, and I found one that appears to be dormant -- not much there.  Maybe, you could be the FlyMan on the internet.  How about it?  Are you game?  Do you think we could try?  

For those of you who say, I am too weak and ill to even begin thinking of trying FlyLady's 31 days of babysteps.  I understand:  I have been there.  You need to take things slow and easy.  Add new things in small increments of time.  If it is picking up clutter, tell yourself, "I can hang that jacket on a hanger and put it in the closet."  Or perhaps, it is a project you have wanted to do.  Do a small amount at a time.  Pick up that trash on the way to the kitchen and throw it in the trash.  Spend 3 to 5 minutes cleaning a table off and rest.  Congratulate yourself for the smallest improvement.  It adds up after time.  Everytime I was able to do one small job, my self-esteem would rise.  And after a while it got easier.

I also discovered I needed to play -- not stew about what I was not getting done.  I started getting outside, sitting on the back porch.  I would read or take pictures of the birds.  Maybe, you could go fishing.  You have to figure out what would be nourishing to your soul.     

Now, for those of you who say that Deborah is having a flare-up:  she needs to wait.  No, I do not want to lose the muscle tone I have gained with activity.  If I wait, it will be like starting all over again.  I just need to measure my spoons carefully.  Or it may be marbles. I will explain marbles another day.  To quote George E. Woodberry, Defeat is not the worst of failures. Not to have tried is the true failure.

Ladies and Gentlemen, I invite you to make some effort at joining me in this endeavor.  If you can't do the 31 days of babysteps, pick an area in your life that needs to be worked on.  Let's share.  If you are on Facebook, like and comment on Balancing Life Changes / Living Better with Chronic Illness.  And of course, I always welcome your comments here.

Here is the link:  Balancing Life Changes / Living Better with Chronic Illness   (This link worked for me, but if you have problems, you can always use the search on Facebook.  To narrow it down, it is a Page.)

Thursday, September 27, 2012

Overload -- Central Sensitization

Today, I am balancing life differently that the past month and a half.  In fact, I left the blogging for later, because I cannot live in constant clutter.  I am not talking about house clutter, even though that is part of it.  Because of the flare-up, my brain feels cluttered.  I am feeling over-sensitive to so much right now:  heat, cold, noise, even how much I see on a page on the internet.  I know that sounds crazy, but it is making me feel irritable;  furthermore, I am developing a headache and feeling more tense.  Last night, I tried to just chill to ward off that feeling of being bombarded, but it was difficult.  The things that usually work did not work.

Courtesy of [Jennifer Ellison] /
I don't remember experiencing this until the fibromyalgia got to the point I couldn't ignore it.  Maybe, as a woman, I attributed it to PMS.  Well, a decade and a half later, I know it isn't PMS.  And I know I'm not going nuts, because I am not the only one that gets these sensitivities.  

Adrienne Dellwo writes some wonderful articles on fibromyalgia.  She keeps with research and knows what it is to experience chronic illness.  She herself has dealt with it for years, and she has learned to live with it.  One of the things she has written about is central sensitization.  A 2008 article written about this is  Fibromyalgia - Sensitivity to More than Pain. A more recent article is interesting because of the overlap we see with other illnesses.  I also recommend reading this. Illness Clusters: The Reason Fibromyalgia & Chronic Fatigue Syndrome "Bring Friends."

I think of my autistic grandson, and I wonder if these sensitivities were always waiting in my genetics for the chance to come out.  I will probably never know, but it does seem there is some scientific basis for the overload fibromyalgia and chronic fatigue patients experience.  

Wednesday, September 26, 2012

Should Have Been Suspicious

I should have been suspicious when I got swollen glands and a sore throat.  Instead, I optimistically called it a cold.  I should have noticed I was getting a little draggier everyday, but optimist I am, I ignored it, and kept doing what I wanted to do.  Why?  Because inside of me is the normal person wanting to get out:  at least, that is the way it feels.  I have felt steadily better since May.  Of course, I was hoping it would last;  and the longer I felt better, the more I was sure I had learned the magic formula to pacing myself.  So what changed?

All I can do is relate what I think changed without any scientific documentation.  For those of you out there that suffer with chronic illnesses that have or don't have overlapping symptoms with Fibromyalgia and Chronic Fatigue, I would love to hear from  you.  Eventually, I might do a survey, but not today.  I cannot deal with learning something new today.  Note:  knowing when to back away from taxing your brain is a good thing, because learning something new can suck that energy right out of you.  

For simplicity's sake, I am not going to give you any cutesy words here.  I am going to make a list of the things that led to my flare-up.  I have had this happen so many times, I cannot believe I didn't see it coming.  But that's the way it is sometimes, and I am thankful for the good, and for the reminder I have to measure out my energy.  And for those of you who have not read it, I want you to read The Spoon Theory.  It is such a good description of what we go through...

Tuesday, September 25, 2012


"Autumn Colors"[by dan] /
I really thought I was going to get caught with "blank page" syndrome today.  Then, I prayed and asked God to help me know what to write about.  Writing about changing our habits just didn't seem to fit today, even though, I know it is helpful.  I will come back to that:  in fact, I am considering writing an online diary of my adventures in FlyLadydom.  Today, I may touch on some sensitive issues.  Usually, my message is very positive, because I want you to know there is life after diagnosis; and,  I want you to be able to do the things to get there.  Instead, I am going to let you know that I feel crappy!  For those of you that know me, you know I  avoid any term that could be considered vulgar.  However, I cannot think of a better term right now.  In fact, even though I know I could do the looking up a synonym thing, I do not want to use another term.  This icky, yucky, about to fall off a cliff feeling is here, and ...

Sunday, September 23, 2012

Assessing My Progress

We have been looking at changing habits;  however, I don't want us to lose our good habits while changing the old ones.  I'm discovering this is a danger.  While I am working on my writing habit and developing new connections for my blogs, my house is not getting the attention it needs.

Did I remember to tell you that perfection is not the goal?  Perfection as a goal can be a danger to perfectionists.  Perfectionists have a strange way of procrastinating on things they don't get perfect;  at least, I do.  Or sometimes, they obsess to the point of being obnoxious. So now, I aim for improving my habits, and I don't criticize myself for not doing it perfectly.  That means I don't ruminate over every detail of what I have or haven't done;  what my project looks like;  or what other people think. I cannot read my friends' minds and my acquaintances' minds;  moreover, I could be erroneously thinking they thought something, which they didn't think.  I can't help what other people think, so it is a waste of my time and energy to worry about this.

Next, we need to assess how we are doing on the habit changing, while thinking about the good habits we already have.

Saturday, September 22, 2012

Good for the Soul

Uplift Your Soul

Today, my heart was stirred with thanksgiving for the gift of creativity God has given mankind by creating us in His image.  God is the Creator of everything, and this is one of the glorious parts of our beings, which stirs our souls when we view His universe.  Most human beings take delight in beauty, and I think this must be true of God as well.  Think of the diversity of nature and the varieties of colors God uses in His paintbrush:  is this not truly wonderful?

Have  you seen Pinterest on the internet?  This is a wonderful site created for pinning and sharing our interests, and it is connected to Facebook and Twitter.   As I casually browsed Pinterest this fine Saturday, I was awed at the many creative ideas on the site.  My soul was filled with thanksgiving and joy over the ability to appreciate and create beauty, which God has given us.   My soul felt fed and lifted as I thought of possibilities and promise:  I can’t wait to start a project.  

Friday, September 21, 2012

More Tools for Success

A little over a year ago, one of my grandsons asked me, "Grandma, why do you have notes stuck all over the house?"  He was surprised to see notes stuck by doors and windows, as well as on the bathroom mirror and by the sink.  I explained to him they were my reminders for developing better habits.

I told you about visualizing the steps for your habit in your mind.  You should be relaxed when you do that:  just mentally walk yourself through your new habit. Using a sticky note is an additional tool you could use to encourage yourself to do your habit.  I like bright colors that catch my eye.  Then, I post them in places where I am sure to pause.

The bathroom mirror usually got a note reminding me to take my medicine.  Also, I would put a reminder to get out of my night clothes and get dressed.  I had a note by my favorite french door too.  I loved looking at the birds through this window, so I usually saw my reminder to get dressed or unload the dishwasher there -- 
whatever the habit of the month was.  

The sticky notes are going to go up again in my house.  I have some new things I am working on, and I am beginning to ignore my to do list.  

One more thing:  do you have sticky notes on your computer, either virtual or real?  I love them, especially the virtual ones on my computer.  If you use sticky notes on your computer, cull them once in a while, so you don't have too many on your screen.  If I leave mine there too long, I have a tendency to start ignoring them.

Have a good weekend!  I'm taking time off from writing on this blog spot.  I need to work on my cleaning habits and getting ready for worship on Sunday.   Talk to you next week.

Thursday, September 20, 2012

Self-Motivation - Toolkit for Success

The thing we are working on now is self-motivation.  I can practically hear some of the groans, because I have been in the place where I thought I would never be motivated again, which made me feel guilty and more depressed.  Having an illness that clings like a vine on a brick wall that you can't get rid of is disheartening, a miserable state of existence;  until, a change is affected in one's heart.   I had to learn to quit looking back at what was, and learn to live in my present.  That actually helped with the self-motivation. 

Very simply, I am going to list the things we should be doing now.  We should be visualizing each step of the habit we are going to change.  My habit is to sit at the computer less.  I am visualizing myself writing my blog, the timer goes off after **30 minutes:  I may make that a little longer.  This is a work in progress.  I get up:  go to the bathroom, get some more water to drink, fix myself a snack, do about 15 to 30 minutes of housework, or whatever needs doing.  The main idea is to move around and free my mind from writing for a few minutes.  Now, I need to take a break.  I'm getting a cup of decaffeinated coffee and 2 lemon snaps (my dessert);  and, I am going to watch a television program, something light and funny.

Most habits being changed should be for a shorter duration than I plan, such as

Tuesday, September 18, 2012

Action Step: Toolkit for Success

Honestly, I am hoping I can make this a short blog post today.  I think we could all use that.  I have the Facebook Page up, but it took me lots of time, even though Facebook does make it easy to walk through;  but I try to do my own artwork, because I don't want to infringe on any copy-writes.  Also, I never set up a public Facebook Page before. The Facebook Page is called Balancing Life Changes / Living Better With Chronic Illness.

On to the Main Subject
Yesterday, I asked you to think about a habit you would like to work on, or one you need to work on -- just one.  Whether you are male or female;  when you have a chronic illness, especially when it is at it's worse or you have overdone,  it makes some of your brains feel like they are slogging through a fog.  In fact, I am having to focus extra hard right now, because I am having one of those days where my brain and body are extra tired.  So pick one thing, one habit you need to change.  My habit I plan to work on is setting a timer when I write.  I need to get up to do other things, to move my body or I get to stiff, and I need to rest my brain.

Your problem may be similar to when I have been extremely sick and sedentary.  My motivation was at its lowest, and taking a bath or shower was a major issue for me.  Or you may be somewhere in between my current situation and my lowest.  The basic way to change the habit is one step at a time.  And you may be surprised, one step may make you feel like taking another;   which, in turn, increases self-esteem and motivation.

I am going to keep this as simple as possible:  if you are sitting in a chair or have a hard time getting out of bed.  Yes, I know it hurts.  Just lie there and

Monday, September 17, 2012

Toolkit for Success - Adaptation

The goal of my blog posts are to encourage you and to share things I have been learning on my chronic illness journey.  Our disabilities and symptoms will not always be the same, but I have found that people who have a chronic or invisible illness often share symptoms, such as fatigue or depression.  These are two areas, with which I have struggled;  and they impacted my routines in negative ways, especially in the area of cleaning house.  I have been a Flylady fan for several years, and I have had success in using her methods to get on track again.  Being a flybaby and adapting the things I have learned from reading Marla Cilley's website have been helpful for me.  She has blessed many people in a variety of situations with her insight into FLYING, finally loving yourself.  As we travel this journey together, I would like you to think about this:  when you finally love yourself, it is a step towards loving other people better.  I am thinking I will also write something about this in my devotional blog, Take Comfort.

As you know, my week was busy last week;  and I have a little cold -- I think.   However, because my habits are improving, I know I can do some things around the house without making myself more ill.  We all have to adapt to our own circumstances, so I am not suggesting you do as I do.  No one knows how your body reacts better than yourself.  I have learned I must listen to my body.  There are times I need complete rest.  You need to adapt what you learn to your circumstances, just as I have.  I am not a doctor, a therapist, or any kind of medical professional.  I am a pilgrim on a journey to improving the way I live my life, so I hope we can have a dialogue during this series of blog posts.One of the things I want you to keep in mind, as you read,  is that I am trying to lay a foundation to work from in this blog post.  Or perhaps, we could call it a blueprint.  

The answers to changing habits and finding what works for you and me takes time.  And I do not want you to be discouraged, because it is a process which does not happen overnight.  However, when the light comes on, that change is possible, that one does not have to stay stuck, it is liberating.

I have been developing a Toolkit through the years,

Friday, September 14, 2012

A Special Day with Family

I promised to start writing more about being a flybaby;  however, I'm not home to do that at the moment.  Instead, I am doing something all grandparents need to take time for.  I am visiting my daughter, her husband, and my grandchildren.  My husband had to go to their part of the country to sing and play his trombone in a concert, so it was the perfect opportunity to drop in for an overnight visit.

Not long ago, there was about a year and  a half I could not travel to visit my family. I somtimes felt very guilty about that.  But I was able to talk to them on the telephone and email them.  Also, they came to visit, and that was lovely. But when they came to visit, I had to deal with  tremendous post exertional fatigue.  However, it was worth it to me to have spent time with my family.  I wanted to know my grandchildren, and they wanted to know me.

Do you find ways to manage spending special 
times with your family?

I know that some people reading my blog posts are dealing with chronic illness and have young children or teenagers  at home.  I empathize with you.  It must be horribly difficult to deal with serious illnesses and care for your family. 

The daughter, we are visiting now has 7 children, 3 of them are special needs children.   I am impressed by the way my daughter organizes their household.  Routines are a very important part of keeping their home from being mass chaos.  Also, they are careful not to be ruled by things or as one grandaughter would say, "Stuff!"    I think a certain amount of simplicity in the home breeds a peaceful atmosphere, and the children have ways to contribute to the household.  They are each assigned daily short tasks that help to make their house a pleasant place to live.  They each have to make their beds, with the older children helping the younger children.  One child  sweeps the kitchen floor. The oldest boy vacuums the few areas that are carpeted.  Another child empties the wastebaskets.  My daughter does a load of laundry every day, and the children fold the clothes and put their own clothes away if they are old enough.  I thought it was sweet when my daughter gave us towels last night and she apologetically said, "They aren't folded perfectly because the girls folded them, but they were folded with love."

My response to that was that it didn't bother me:  I don't expect them to be perfect.  The children are not frustrated by a mindset that everything has to be done just like an adult would do it.  Instead, they are enjoying the fruit of accomplishing tasks that benefit their home and family.

We could apply this idea to our own lives as well.  I used to try to do everything perfectly, and if it did not turn out to fit my idea of perfection, I would apologize.  For example, I would actually refold the towels if they were not folded a certain way, so they would line up perfectly in my linen closet.  I know that sounds obsessive, but that is how I was taught to fold towels.  In fact, I remember while I grew up, there was an emphasis on doing things a certain way -- while I wondered why it mattered if I got the same results.   I think I carried this perfectionism into my everyday life.  And I still catch myself trying to do certain things perfectly, whether it matters or not.

Since I have been ill, I have had to give myself a break. But I also,  I have had to actively remind myself when I began to fall into perfectionistic behavior.  FlyLady has a saying I love:  Housework done incorrectly still blesses your family.  Simply put, I think that means to do what you can, but then be happy with it.  Sometimes, perfectionists avoid what  they know needs doing;  and then, when the pressure of having to get a task done builds up, they exhaust themselves by trying to get the job done in a short amount of time.  And of course, they work on doing it perfectly, even if it takes all night.  I'm the expert on that method.  LOL!

Thursday, September 13, 2012

Fly-baby Deborah's Journey Out of CHAOS

Hello again!  If you read my last post and clicked on the word, CHAOS, you should have discovered FlyLady, Marla Cilley's website.  I discovered about 6 years ago, and I thought I would be a genuine reformed fly-baby long before now, but I am not.

I suppose the general consensus is that a person was a slob before having found FlyLady, but that is not necessarily true.  Most of us manage to have a reasonably clean house, until something happens that turns things upside down.  For me, it was chronic illness, which gradually grew worse.  The depression that came with the illness did not help.  I had no motivation, and I had no energy.  That was not a good equation for keeping one’s house clean and uncluttered. 

First of all, for the uninitiated, CHAOS is an acronym for can’t have anyone over syndrome.   That absolutely says it all.  I would have felt like I was going to die a thousand deaths over the embarrassment of having someone walk in my house after I got sick.  And on my good days, I managed to make myself feel more ill by doing a marathon cleaning job.  At the time, I didn’t think Depression or Fibromyalgia should keep me from getting my housework done.   I couldn’t figure out why I had long periods afterwards, that I couldn’t do anything.  I also found out I have a liver disease called NASH.   Furthermore, I found out I have Hypothyroidism and Chronic Fatigue Syndrome;  so, I got in this cycle of letting the clutter pile and waiting to feel good enough to do something about it.  Obviously, I needed to find a better way.  My self-esteem was going down the drain quickly!

So what happened after I found FlyLady?  Did I go through her thirty-one day plan and become renewed and revamped?  I wish I could say I did, but it wasn't quite that easy for me.  It was kind of like yo-yo dieting.  I didn't have the energy to stick to the plan every day.  Some days I didn't feel like taking a shower, much less getting out of my pajamas.  I had to find a way I could do this at my own speed.  That is what I am going to share with you.  You are going to read how I adapted FlyLady’s excellent plan to my own life.  Moreover, I am still working on it.  Let’s see if we can share the things that are helping us manage our lives better – our lives as they are now.

Tuesday, September 11, 2012

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.

Friday, September 7, 2012

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.

Two illnesses that often walk hand-in-hand:  Fibromyalgia and Chronic Fatigue Syndrome
Courtesy of [Stuart Miles] /  

 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.


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.

Wednesday, September 5, 2012

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.

Sunday, September 2, 2012

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...

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