The Dichotomy of Fibromyalgia and Dreams

Saturday, November 10, 2012

While I want to encourage all my readers that have Fibromyalgia and Chronic Fatigue Immune Dysfunction, I have to be totally honest too.  That is one thing that I feel is important, so we can be realistic about what we can and can't do.  I don't want to be a bubble buster or a dream stealer;   but I know how it feels to have false expectations, and then fall flat on my rumpus.  If you see some unusual spelling or grammatical errors today, part of it is due to my fibro-fog or brain fog. My Brain Fog is really bad today.  I am having trouble reading and comprehending.  I can write, but there has always seemed to be a connection between my fingers and brain.

I have had my share of ups and downs the last few months, but it seems to be part of my landscape -- having to live within the parameters of feeling Kinda OK or Tired Of Being Tired.  Since I won't ever feel Really Well again, unless someone comes up with a miracle cure, it would be nice to feel KO (kinda ok).   However today, I just had it with feeling TOBT (tired of being tired).  I am tired of being achy, burny, hurty. I am tired of sinusitis and having a urinary tract infection.  And I am tired of me.  Ugh!  Ever felt that way?  So at least you know I am a real person, and I have my fragile times.  I suppose this is one of them, and I know it has been building, because I want to be able to push past my tiredness.  However, that does not work for people who have FM and CFIDS.

Sunday Nov. 11, 2012
For those of you that have been following my FlyLady 31 Days of Beginning Babysteps, I can honestly say that I have made progress because of doing the baby steps;  however I have not been able to do every step every day.  Between flares and illness, I feel like I have done the best I can.  Somedays, I have been able to do all the steps and other days, just a few.  I am seriously thinking about exploring other ways to be successful in continuing the steps--perhaps modifying or coming up with my own schedule.  I  may not be able to have complete control over how my body is going to react and be everyday, but I am convinced I can find a way to improve on how I manage housekeeping.  I also realize one of the main ingredients is getting rid of clutter.  FlyLady is right about "clutter attracting clutter."

I guess you noticed the dates.  Yesterday was tough, but I survived.  My night was restless:  I could not get comfortable, and I am staying away from pain meds, because of the warnings on my antibiotic.  The brain fog is better and the shaky feeling I had last night is gone.  My blood sugar went up to 194 last night.  My body notices those kinds of changes right away.  Today, I started my day out right, with the mindset I am going to pay better attention to my moderate low carb way of eating.  However, I am still trying to make up my mind about splenda.  Splenda was helping me to follow this way of eating, because I could still have my homemade chocolate balls.

God bless you all.  Have a wonderful new week.

Love,

Deborah  

  

Lost Days (Cognitive Dysfunction)

Image Courtsey of [Evgeni Dinev] / FreeDigitalPhotos.net 

Do you ever feel like you have lost days, because it seems like a week has gone by, but it has only been two or three days?  When the realization comes that you have to look for documentation of where you have been  when, and what you have done, it almost feels like waking up from a dream.  Maybe, that is one of the reasons I like writing things down. Even if it is just a list, I can see what I have done, whether I went into much description or not.  However, I don't always have intense brain fog.  I have found that energy levels, pain, and stress all affect my cognitive abilities from being very good to being dysfunctional.  Today, I first noticed it in this sense of having lost days.  I was trying to remember what day I was on for Flylady's 31 Beginner Babysteps.  I slacked off reading them for a couple of days, although I was still doing the routines.

Cognitive dysfunction is a problem for people with Fibromyalgia and Chronic Fatigue Syndrome.  I think forgetfulness must run the gamut from mild to intense.  After having read many accounts of forgetfulness and having dealt with my own, I know that it seems to partially involve short-term memory problems.  It affects life daily from forgetting words to forgetting how to get home.  Many people who were formally very sociable become less so, because they cannot hold a conversation without forgetting what they are going to say, while waiting their turn to speak.  Sometimes, I see faces of people I know, and I have a hard time putting  names with their faces;   or I feel like I probably know them, but I am not quite sure.

Image Courtesy of [dan] / FreeDigitalPhotos.net

For those of us who start feeling confused at the store, because of the lights, the people, and having to make decisions about what to buy;  it can be very disconcerting and impair memory, even if we felt fine earlier in the day.  For some people this leads to panic attacks.  When this happens to me, I may actually have the panic attack after I get home.  I may have a physical reaction and feel like I am trembling all over.  My hands might actually be shaking.  Moreover, my head may feel cloudy:  I feel like I am slightly off and it is harder to focus.

It would be wonderful if you would respond to this, and give some feedback on how cognitive dysfunction affects you.  It helps to know you are not alone;  and for so many intelligent people to have the same symptoms could not be coincidental.  For more information on cognitive dysfunction, you may find  the following link helpful:  Cognitive Dysfunction Finding in Fibromyalgia by Adrienne Dellwo.

P. S.  I would like to finish my Flylady 31 Beginner Babysteps by Wednesday.  It has taken me longer than 31 days.  If I had done it without skipping any days, I would have been done by October 29;  however, I knew I would probably have to skip some days, because of my flare-up.  The point is I am determined to pick up and jump in.  I even find myself doing some up the steps on the Routines automatically now.  However, I have to rest often, especially lately.  So I would say the experiment has worked, because I am improving my habits.  The thing is, I know I am not done.  I will have to continue the job.  My house was an absolute mess before I started, and I still have boxes and items to put away, throw away, or give away before I am at the point of having "My Own Home - Bed and Breakfast."  I figure, although slow, it is definitely worth it.

So Doc, I'm Goin' to Live?

These Fibro bodies, crazy silly things, we all wish they would work the way bodies are supposed to.  However, they don't, and I'm finding it is better to learn to live with it well, than to complain.  I am not saying that I never comment on my pain.  I just don't see any point in letting that be the focus of my life, except when it is so bad, I am reaching for the pain remedies and grabbing the heating pad.  So often, I smile and shrug my shoulders.  After all, what can a person do, when it is so hard to establish a schedule like everyone else's.  What can one do when one also has Chronic Fatigue Syndrome and Fibromyalgia, but smile and go on.  

Remember, if you have a chronic illness, it does not make you a weak person.  I am learning more every day about how strong people who have chronic illnesses are.  In fact, many of us probably lived with our illnesses for years before we thought it was anything more than a few aches and pains, pushing through, living life to the fullest.  I don't know about you, but I am so thankful for the years I had that I could live an athletic life, care for my family with ease, and be extremely active in my community.  I still hope to get to a point I can add some of those things back into my life, but I do not obsess about it; nor, do I grieve anymore.

If you are newly diagnosed or just realizing something is very wrong with your body, you need to know it is normal to grieve for the loss of physical things you were once able to do easily.  If you have an invisible illness, which means you look like you are well -- in fact, you may look fantastic, other people have a harder time adjusting to the fact you really are sick.  And some people have a hard time with it, because they look in the mirror, see themselves and ask themselves why they can't just snap out of it.  I know I have had those times of questioning myself, especially before I realized my depression was a result of being fatigued all the time and not knowing why.  For me, knowing was a kind of relief -- it wasn't in my head.  The proof was in my blood tests.

I did say hello to the doctor today.  It was a good visit, and my ears are hurting because of allergies.  When I get that cleared, I should quit having pain in my ears.  Actually, I like my doctor.  He's a very caring person and he doesn't mind me asking questions, nor did he mind the list I brought in.  If I didn't bring a list, I would never remember all the things I wanted to ask him -- at least, that is the way it was for me today.  

Image Courtesy of [David Castillo] / FreeDigitalPhotos.net

Speaking of Lists:  it is a good idea to make one before you visit your doctor.  There is nothing more aggravating than getting home and remembering the question you forgot to ask.  Also, this is part of being proactive about your health care.  Doctors are not mind readers, and they have many patients.  It's not that they don't care about you or they are too busy.  They have heavy patient loads to carry.  Can you imagine being responsible for the health of the people that are in that waiting room?  Have you ever seen all the charts filed in a doctor's office?  And then, they have all the regulations and insurance they have to know about.  Being a doctor in today's world must be a calling, because it certainly isn't easy.  And as much as they would like to heal every single person;  sometimes, all they can do is make us more comfortable.

P.S.   Two more days of FlyLady's 31 Beginning Babysteps have gone by.  I am on Day 22, which leaves eight more days for me.  I am so excited to be near completion of the babysteps.  

One of the things that have been emphasized in the FlyLady's 31 Beginning Babysteps is the Control Journal.  The control journal is not to control you:  it is your tool to being more organized.  I have had the purple control journal for several years, but I have not utilized it to it's fullest the last couple of years.  Therefore, I have decided it is time to reorganize.  I may even write my address book  in there and my Christmas list.  I will let you know how I like it as I develop my own organization.    I need to go and be Fly Busy for about 45 minutes.  Ya'll have a great day.  

Ten Days to Go

Days 19 & 20   

September 28, 2012, I started a 31 day journey to travel through FlyLady's Beginner Babysteps.  According  to my records, today, I should be on Day 29;  however, I knew it might take longer.  The point of this for me was to read through every single day of Cilley's steps, and use this for a guide to improve my habits in taking care of me and the house.  When I am in sync in these two areas, one supports the other.  If I take care of myself, I usually have more energy;  on the other hand, if I take care of the house, it is energizing.

Even though I have had to skip some days of doing housework or was not able to do every step, I can see the progress and feel encouraged that I can do this.  I won't do it perfectly, but I have become more aware of picking up behind myself as I go along.  I have found myself putting things away immediately, so I won't have to do it later.  It is easier to dust, because the tops of my furniture are clear and I don't have to use a spray cleaner every time.  I use my microfiber cloth, microfiber mitt, or an ostrich feather duster.

I admit to not shining my sink every night, but it stays shiny longer when this is a goal.  Getting dressed in the morning, or whenever I wake up, actually motivates me more than shining the sink;  however, it is lovely to have a shiny sink.  I am going to go shine it after I finish this post.  There is nothing groundbreaking going on here:  just days of trying to keep up with the new job I have given myself by being a blogger, and the sense that my life is on an even keel.  That is a good place to be.

Do you feel like your life is on an even keel?  Can you think of one thing you could do that would help you get there?  Or, does your mind feel like a jumbled mass of confusion, wondering when the fog will lift?
Many times we blame this on our illness, which does play around with the hormones and chemical reactions that go on inside our bodies.  If you are in peri-menopause or have just hit menopause, I think these conditions hit Fibromites with a double whammy.  However, I think there is a psychological factor involved too.  When one is ill, day in and day out, when one is exhausted most of the time, it seems to breed more exhaustion out of the frustration that has built.  It's going to take a process and time to see improvement.  I have been working on getting my good habits back for four years with several setbacks, such as flares, a broken ankle, hip replacement, a sprained knee, and a move.  Each time I have recovered, I had to slowly start adding small steps to my routine.  This time it has been a little easier.

Just for a couple of minutes, other than taking your medications and supplements, what small step can you take that will help you move from stasis to flow?  I encourage you to take a very tiny step.  It doesn't have to be cleaning house.  It could be as simple as going outside and walking around the house once or going fishing.  Could you go to the library or to a park?  Or maybe, it would be as simple as taking the dishes out of the sink and cleaning it.  Make it really shiny--but not perfect.  Then, dry it with a towel.

What I have found is one move leads to another move.  It is almost like setting dominoes into action, except you will be stepping up, not falling down.

P. S.  Day 20 mentioned taking care of laundry in the morning and at night.   This is a fresh load into the dryer from the washer: I took this picture tonight.  I love washing things in cold water.  How many of you remember having to wash whites, lights, and darks?  Now, I combine my whites and lights.  I know this is how my daughter with 7 children keeps up with her laundry.  My other daughter washes clothes at night too.  Just one word:  please don't go to sleep with the dryer going.  We had a friend whose house burned down from a dryer fire, while she ran an errand in her car.  That's why FlyLady encourages people to get the lint you don't see out of the dryer.    

An Atmosphere That Promotes Peace

Have you ever had a moment where you breathed a quiet, "Ahh"  to yourself, because you felt peaceful in your home?  I have had that experience happen two days in a row, because my house looks more like a home to me.  

Is it perfect?  NO!  And it probably won't ever be, but that feeling of being home happens more when one is not surrounded by clutter.  Furthermore, one of the wonderful things that is happening is that my routine is beginning to feel more natural to me.  Day 17 and 18 in FlyLady's 31 Beginner Babysteps is working for me.  And if it wasn't for you, I don't know if I would have kept doing it.  I might have said this is not going to work for me, because of some little setbacks I had.  However, I have felt encouraged to keep going and not give in to moments of doubt.

My Dining Room/Work Table After

My Dining Room Table Before

This morning when I got out of bed, I actually made it right away -- before breakfast, before I took my medicine, and before I got dressed. The surprising thing was I thought it was easy.  More ahhs occurred when I worked at my dining room/work table  today. I have before and after pictures for you, like I promised.  It isn't magazine new, but it is usable now, and I intend for it to stay that way.  I have worked at my grandmother's old dining room table for two afternoons, and I have enjoyed being able to use it again.

Finally, it is important to tell you that removing clutter seems to have a very positive affect on one's psyche.  It feels liberating.  Even on the days I feel more fatigued, I don't feel as overwhelmed, because I am seeing what 15 minutes here of picking up clutter and 5 minutes of clearing my accumulated piles can do.  I knew in my heart I could get rid of the clutter, but now my mind has been convinced.  

If you are in a situation where clutter has overwhelmed your life, I highly recommend FlyLady's methods.  Because of moves and my illness, I have had to rework those habits several times.  You may find yourself having to work on habits over again, as I have done.  FlyLady knows that we have to keep working our habits, and she has a system that allows people to "jump [right] in" (Please read You Are Not Behind by Susan Lamonica.  It will bless your heart).  Every month there is a habit to work on for the whole month. These repeat every year.

The point is that whether you use FlyLady's system or find another system of keeping up with the clutter, when you do this on a regular basis, it makes life more pleasant.  In the testimonies I read in the emails I have received from FlyLady, I have read how people's lives are improved and how their homes have an atmosphere of peace.  That is what I want for myself and that is what I want for you.  

Peace be with you and many blessings,


Deborah


P. S.  One thing I have learned from FlyLady is that I cannot organize my clutter.  Clutter is the stuff you don't need, you don't like, and you don't use.  Of course, one has to make their own decisions regarding what is clutter in their own lives. However, am finding I want to simplify.  I remember those early days of keeping house.  I did not have all the wasted paper that comes in the mail, nor as many items to put away.  My wardrobe was limited:  I didn't have years of accumulation (the things I might use again).  Having moved many times over the years, I might have less than some people.  But it is still more than I want to deal with.  Have you ever been on vacation, and enjoyed the simplicity of a small kitchen and a home where there was a place for everything?  My goal is to make this home my own vacation spot, the Bed and Breakfast, that I live in everyday. 

Visitors Are Coming! The Energy Boost

My Imperfectly Made Beautiful Bed

Maybe we should roll Day 15 and Day 16 of Flylady's 31 Beginner BabySteps together.  What happened?  Did the lady of the house have sudden healing for her knee and chronic fatigue syndrome?  How I wish that had happened.  Actually, the knee felt much better today.  I put up the walker and graduated to my cane, so the rest, brace and ice pack paid off.  Also, I am sure complete rest helped my fatigue.

Today, I had an amazing energy boost!  It's called The Company's Coming --Gotta Have The House Clean.  This causes a chain reaction in the body better thought of as fiery fervor or excited exhilaration.  And, my husband says, "Tomorrow, you're going to be exhausted with your tongue hanging out. "  I have a very smart husband that knows me well.  7 grandchildren, their parents, a husband, a dog, a cat, and me -- that should wear anyone out.  Both my daughters are very special, strong women.  I am so proud of them.  With both families here, we would have a lot more people in the house -- that would be 3 children and another set of parents.  If they are all in the same room with us that would be 16 people and 2 animals.  However, this time it was my elder daughter and her husband and children ages 1 year to almost 13 years.  

We ate simply tonight:  pizza, green beans, and ice cream.  Yesterday, I told my husband it was going to have to be simple:  frozen party size lasagna or pizza.  Of course, the kids were thrilled with pizza.

About the house:  I did the Monday House Blessing today, on Saturday.  I cleaned the bathrooms, vacuumed the living room, put in a load of laundry, and I dusted.  Today, I was Wonder Woman:  tomorrow, I will be Goofy-tired Grandma.  

How many of us fibro-peeps have always been able to manage things on an adrenalin boost?  It would be interesting to get your input on that one.  I know many of us have adrenal fatigue.  At least those of us who have CFS and  Fibromyalgia probably do.  I found Dr. Marcus' website and I like his diagrams.  From what I know of adrenal fatigue and cortisol, they are pretty accurate.  I know this was part of my problem when I found out I had CFS.  I also found a good article on adrenaline and cortisol in Living Healthy.

I love you guys, and I hope you are enjoying your weekend as much as I am enjoying mine.  

Until next time,

Deborah 

Handling the Truth about My Illness

Yesterday, I tried to write and all I could do was feel stuck in fog.  I even went to look up some information on what it feels like to have Chronic Fatigue Syndrome, as if I didn't know.  I'll share a link with you at the end of this blog post, but first I want to write while my brain feels clear.

"Autumn Colors"[by dan] / FreeDigitalPhotos.net

How do I let you know I am being positive, even when I write about the realities of this disease?  I know that it is not officially a disease, because the researchers have not pinpointed the cause of the syndrome:  but, those of us who have it know it feels like a disease. And just because someone doesn't know what causes it, does not mean it isn't a disease.   That sounds sad, but it isn't depressing to me like it used to be.  The depression many have with Fibromyalgia and Chronic Fatigue Syndrome used to be unbearable.  For months on end, I think I did little but exist;  but, that has changed.  

However, that does not mean that I don't have to deal with the moodiness or feeling that I am coming down with something.  It does not mean I don't get tired of CFS and FM, or that for a while I might hope I will never feel this way again.  I know what is causing the mild depression; I try to do what I can every day; and  I know I did not ask to be this way.  Whether other people understand or not is something I cannot help.  Sometimes, I don't even understand.  I went to therapy before I knew I had Chronic Fatigue Syndrome, and that helped me with worrying about what other people thought.  I knew I had Fibromyalgia, NASH, and prediabetes.  What I didn't know was I had Chronic Fatigue Syndrome too, until about a year later.  I also have a strange skin condition called Erythema Annulare Centrifugum, which I have had since my late twenties.  I have had it for over 30 years and it varies in the places it appears, and in severity.  I had it all summer, and it was bearable.  Right now, I have one area that is quite deep -- and it burns, hurts, and itches.  But guess what!  I am not depressed like I used to be, because I know  that I deal with something I did not cause.  I know all this fits together somehow.  Furthermore, I know that God knows my heart, even when I doubt myself.  He knows me better than I do.  When I read Psalm 139, I am completely assured that God knows everything about me;  and my heart is calmed.  

Finally, I suppose some of you might wonder what this has to do with FlyLady's 31 Beginner Babysteps.  It is a matter of facing reality.  This summer I began to feel better and I was able to do more, including light exercise.  Some days, I felt as if I was getting better and would probably be able to maintain at a certain level.  Unfortunately, I could not do that.  As I added things into my life, I was sapped of more energy, and I did not recover well.  Then, I began to feel guilty and angry (usually at myself), that I could not live a normal life.  The fact is I have a new normal, or perhaps a better way to say this is I have a different normal.  And I know this is true for many of my readers.

Therefore, I will be mentioning FlyLady's 31 Beginner Babysteps in passing.  I am still going to work on my habits,  but at a pace I can maintain.  I cannot and will not please everyone.  It is impossible.  But I can pray, ask for guidance, and be happy in my circumstances.  If I try to do more than my body can handle to please other people, than I am not being honest.  I know there are times I put out more, because I am shooting for normal, whatever that is.  However, my body shuts down;  and it has done that to me for the last 20 years.  About three years ago, I  became so ill I felt like I had the flu all the time and I did not recover for even a few weeks.  I was desperate to find  a way to get well.  I knew it was not just FM and liver disease.  The point is:  I'm the one that has to live with it, as does my husband to a degree.  What anyone else thinks about me is irrelevant:  I cannot help it if people, who do not share my circumstances, do not understand.

Whatever chronic / invisible illness you have -- you are the one, who knows how it makes you feel physically, mentally, emotionally, and spiritually.  Nobody else can determine that for you;  however, there are counselors that can help.  And if you know God, He will help you too, whether that means complete healing or coming to terms with living on this earth with a disability.  

That is enough for today -- somehow, I don't feel like this is a finished subject.  I'm going to get a snack, put some laundry in the dryer, and rest.  Maybe, I will look at FlyLady's 31 Beginner Babysteps for encouragement.   However, I want you to remember that doing the Babysteps is an experiment for me.  I am not going to feel guilty when I cannot do them, nor do I want you to feel guilty.  Resting is doing something.

The following link is an informative one on post-exertional malaise and how it feels:  Unraveling Post-exertional Malaise by Jennifer M. Spotila, J.D.

Happy and Lighter

Day 13 and Day 14 of FlyLady's 31 Beginner Babysteps  have been accomplished, and I am seeing the fruit of my labors.  I also made a list, which included 15 minutes of picking up clutter and a 5 minute room rescue.  I still have to do laundry and other things around the house, so I am working on both.  Also, I have my blogs to write, so those are part of the list.  

I know some of you have wondered if I could recover from my flare-up...

What's Important for Me To Do Today

For someone who spends much of her time at home, today was one of those days I had to go out.  After a relaxed breakfast, showering, and taking extra care dressing to the shoes, I was ready.  I did part of the directions for FlyLady's Day 12 Beginner BabySteps , but I had to make a decision which was most important -- going to the supermarket or doing all the baby steps.  I voted for the supermarket, which also has a walk-in hair salon...

The Ordinary Arts

“The ordinary arts we practice every day at home are of more importance to the soul than their simplicity might suggest.” ― Thomas More

Have you ever felt like you were at home in someone else's house?  I have, and I think it was due not only to the personalities of the people who lived in that house, but also to their ability to make the house feel like a home.  Don't let this be a daunting idea to you.  It is one that can be achieved in simple abodes and in the most sophisticated homes.  Moreover, the key to doing this does not mean we all have to have top designer capabilities:  we just need...

No Guilt Flare-up

Feeling the Pressure
D. Bolton

Have you ever read a book, watched TV, surfed the internet, or just sat feeling horrible;  instead, of reading your Bible, praying or listening to Christian music?  Have you ever wondered if God would show you a verse to make you stop feeling guilty for being sick?  Well, I have and I know better;  but sometimes, I think I will never stop having relapses and then I worry about those people who don't understand, even though, I know the scriptures that tell me not to worry.  

You and I cannot do a thing about what other people think.  We really don't know what they think if they do not tell us.  And to make a guess about what they are thinking is pure supposition.  Here are some of the things I am physically experiencing now:  trouble falling asleep, trouble staying asleep, and awful dreams.  And of course, I am having pain and balance problems.  Right now, my tinnitus seems more pronounced, and I am exhausted.  My body felt like it had nervous system buzz going though it all day.  Right now, I am finding it a difficult to type, but as a last resort, I took some medicine to help me relax.  Feeling my nerves throughout my body is so uncomfortable:   I  would categorize it as painful.  And of course, I am feeling the fibromyalgia pain, as well as experiencing debilitating fatigue.  

Therefore, I have lost another day towards completing my 31 day challenge.  But that is not going to ruin the work towards reaching my goal.  When I am able I will continue FlyLady's 31 Beginner Babysteps.  

That is what pacing yourself is about.  You have to be gentle with yourself, and listen to your body.  Sometimes, your body will shout to you to rest all day.  Other times, you will be able to pace activities throughout the day.  Rest is not failure.  Rest is necessary.  Be gentle and let yourself heal as best you can.

Flying Not Fluttering

Today is Day 10 of FlyLady's 31 Beginner Babysteps ;  and, I am beginning to feel the urge to count down, because I have never gotten this far with The List.  Yes, that is how I had begun to view the babystep list , because I have never finished it.  So I have fluttered here and fluttered there, but never felt like I was completely flying.  And I know my flying will be a little different than flybabies that are not ill, but that is fine with me.  As long, as I am taking care of myself by resting when I need to, I will still be successful.  In fact, I have felt successful in working on my habits every time I have seen improvement.  Congratulating myself at steps accomplished is the key.  That is why I suggest keeping a calendar or chart of what you are working on and marking it off as done.  And men, I still like flowered stickers or colored markers.  I like pretty.

Don't feel bad if you have to back up day to read directions over again on the FLying Lessons , especially the decluttering lessons from yesterday.  I have been doing this for several years, and I find that reading the lessons over again helps me if I have been limping along.  Moreover, I could not completely focus on the lessons yesterday, and I need to brush up.  It is the repetition of reading and doing that helps develop the good habits, so that is where I am going now -- back to read the Flying Lesson:  How to Declutter .  And then, I am going to continue doing what it says on the Day 10 list.

Have a good week!  Let me know how you are faring with your new changes.

I Love Aha Moments

Today, I had my aha moment!  It happened before I read Day 9 of FlyLady's 31 Beginner Babysteps and before I dressed to my shoes.  I walked by an empty bank box, which I am saving;  and I realized the largest hot spot, which I have been avoiding for several days, does not have to be a point of contention in my life.  Several weeks ago, I should have realized -- after unpacking boxes of accumulated stuff and throwing away bags of formerly important items -- that I could dispose of the mess which has been aggravating me for months. Every time, I get that area partially cleared, I get sidetracked to something else that needs immediate attention.

Now, I'm smiling.

Therefore,  my new plan  is to put it in 
boxes and label them;  
then, I shall go
through one box at a time.

This may sound dangerous to anyone that knows about the other boxes of stuff I have thrown away, but it really isn't.  The old boxes were full of stuff we thought we had to keep for sentimental, documentary, or frugal reasons.   Because I did not want to box up clutter again,  I thought I had to go through things one piece at a time, but I was wrong.  Therefore, I am going to fill the boxes and label them; then, I can go through them one at a time.  I need to do this for me.  It doesn't mean I have to keep what is in the boxes.

The reason I didn't do this before is that I didn't want to fill more boxes.  I am not worried I will let these boxes sit, because I'm determined to get rid of the clutter for good.  Besides, this cluttered room has given everyone permission to pile it up more, right on the dining room table, because it is the first thing seen when walking into the house.  And that is the problem!  The clutter has acted like a magnet to more clutter.  I should know;  after all, I am a chief offender.   Did I mention the dining room is central to almost every part of the house?  So all I have to do is get distracted, and whatever I put down goes in that area. If the clutter is gone, maybe everyone will think about it, including me.

Experiment number umpteenth thousand is about to go in action:  Box up everything on the dining room table, except the duster.  I will keep you updated.  I am smiling as I think about the very clean dining room I will have in an hour, and how good I'm going to feel.

Family Day

None of my steps forward have been easy for me, and sometimes, I find that I still occasionally have problems with agoraphobia, especially if I am very fatigued.  Actually, it reminds me of the chicken and the egg question – which came first? 

I wonder how many fibromyalgia patients have found they have changed from loving getting out of the house and being around people, to wanting to stay home.  Because I have had bouts of anxiety this week, I almost stayed home from going to the state park today, which I know was good for me, my husband, and the dog.  The kind of anxiety I speak of is not the same as worrying about something.  It hits even when I am not worried about anything.  Maybe, the flare-up I have had is doing something to my hormones.  Our bodies are so complicated with the various chemical processes that are involved in keeping us running properly. 

Therefore, I ignored the I wanna stay curled up in my chair attitude, and I said, “OK.  I’m ready go to the park.”  FlyLady would approve:  Saturday is family day in FlyLadydom.

Speaking of FlyLady, I did do most of Day 8.  But I still have to shine the sink after supper and put out my clothes for tomorrow.  And I’d better put the Bible I carry to church and my purse together too:  I have this bad habit of hunting for things, when I need to get out the door.  The thing I am really procrastinating on is giving myself a pedicure.  I love the way a fresh pedicure, with pretty nail polish looks , but I resist doing it like the plague.

The Hoarders?  No.
This is what this room looked like when
I started.
It' s not finished, but the boxes aren't there anymore,
 and I can find things I thought were lost.  I don't advise
moving if you have CFS and FM, but life doesn't
always consider our illnesses.

If I am sounding negative, tell me.  I really am trying to be honest.  I think writing a blog and making it sound like I have things perfectly together would negate the purpose of this blog.  

Oh dear!  It is 7 PM my time, and all I want to do is close my eyes.  Maybe, I should walk in the park more often.  You all have sweet dreams tonight.  Don’t give up on our FlyLady /Habit Project, and don’t get frustrated with yourself if you don’t do things perfectly.

Light, Noise, and Nerves

Sometimes, as women or men with Chronic Illnesses, we have to bend to the way the wind blows.  For some reason, my blood sugar is going up – I know it is not diet, so that leaves illness or stress.  I suppose my diabetes could be getting worse, but I doubt it.  And the other thing is that I have felt extremely jittery almost all day, with it increasing early this evening.  It feels as if every nerve in my body is standing on end.

[David Castillo Dominici] / FreeDigitalphotos.net

One of the things that is really getting to me is noise.  Some days, I can listen to different stations as my husband surfs stations during commercials; but today, I am cringing inside with the different noises in the house.  It is as if my body is wired and the nerves are being attacked.  Why that changes from day to day is a mystery to me.

However, today, I was reading an article by Adrienne Dellwo, and she had written, “We don't know the causes of light and noise sensitivity, but they're often called "generalized hypervigilance." That means our bodies are constantly on high alert. It's also a symptom of post-traumatic stress disorder.”  I don’t know if a nightmare, right before you wake up could aggravate hypervigilance, but I had a humdinger that was about the dearest people in my life right before I woke up today.  I remember waking up grieved and sad.  That might be enough to start a bad day that would stimulate hypervigilence.

However, I have not let that keep me from going on to Day 7 of  FlyLady’s 31 Daysof Beginner Babysteps.  And it is worth it, because tomorrow, I can say I have done a week’s worth of steps. I congratulate myself for following through.  I don’t have a clean house yet, but I am going to.  I am sure of that. 

One more thing:  I have found FlyLady Bingo is a game that encourages me to make headway.  I played it today, and got some things done that were on my to-do list.  Action is sometimes a way to make it through a day that starts off badly.  That at least gives me the satisfaction of knowing I am in charge, not my illness.

A Lady's Preogative

Have you heard that saying, "It is a woman's prerogative to change her mind."?  I am exercising that authority, at least for now.  Today, I entered Big Tent world again.  Yes, I know I said I wouldn't;  however, I saw FlyLady's day 6 list for flybabies,  and I read these words:

Going to the FlyLady BigTent group and reading messages. 

 I began to feel as if I might be missing something:  I just had to see.

The very first message spoke directly to me.  And don't you dare laugh, unless you have had it happen.  The message was in group news from Pam Young, Young at Heart:  All Is Well. I don't think you can read it, unless you actually join the FlyLady's Big Tent group.  Again, I reading something about what we say to ourselves.   

Yesterday, I mentioned negative thoughts and positive thoughts.  I said we should turn those negative thoughts into positive thoughts;  and I have actually done this with success. So what happens to me?  Today, I started having negative thoughts.  My Christian peeps will probably say I am being attacked by some of the Enemy's cohorts.  That is a possibility.  Well, I don't plan to shut-up any time soon.  I know who my Lord is, and that is Jesus Christ, no if's or and's about it.  That is just the way it is.  Or maybe this is just God's way of answering prayer, because I prayed as I wrote last night, that God would show me just how to talk about Him in this blog.  If you want to know more, you can  email me at deborahb.blogs@gmail.com or simply read "Take Comfort"--Short Devotionals.  And of course, you can always comment here.  

Day 6 is not going well for me.  But I think it is going to go better after I finish this blog.  Moreover, I get to do something new today -- well not really new to me, but I am disciplining myself to get through this 31 days.  Hot Spots is the new FlyLady phrase to learn today.  Check out Day 6 and scroll down:  it's there.  I cannot wait to hit my hot spots.  Oh boy!  I have lots of them.

Oh My! Day 5...

I have made it to Day 5, which has been quite slow for me.  I admit to having spent more time sitting, than I like;  but, at least I am still moving forward.  For those of you, who have no idea what Day 5 is:  I am referring to Day 5 of FlyLady's 31 Beginner Babysteps.  My goal is to make it through all 31 days.  I have been a flybaby for several years, and I can already see differences in my habits;  however, I have never done all 31 days to the end, which is actually only a beginning.  

For those of you who are saying, "I could never do FlyLady's routines.", I  understand where you are coming from.  However, she has some solid advice to offer that has worked for thousands of people,  and I would not even mention her if I had not found my life improved by something she teaches.  The thing that befuddles us spoonies is the energy deficit with which we struggle daily.  That is why I suggest working on one habit a month, especially for people who have been extraordinarily sedentary.  Furthermore, as someone who has fibromyalgia, I found that was all I could concentrate on in the beginning.  As I began to feel stronger, I added another habit to work on, and as I have mentioned in prior blogs, I would check off the habits on my calendar if I did them that day.  There have been times I have had to repeat the process, because I had a lengthy flare-up;  and that is fine, because every time I repeat it, I know this method works.  In fact, I am to a point now, I think I can actually get through all 31 of the steps.  And I know I do not have to do it perfectly to see improvement.  After all, these are baby steps.

In Day 5 of FlyLady's 31 Beginner Babysteps, she reminds her readers to turn their negative thoughts  into positive thoughts.  It is amazing to me how I can say something to myself I would consider rude and judgmental   yet, I would not speak that way to other people.  I have found turning negative self-talk into positive self-talk has a better long range effect on my emotions and actions.  Doing this helps my attitude immensely.  

Finally, I know that everyday I am able to work on improving something basic to my well-being and my family's well-being is worth doing.  I may not do it perfectly, but that is all right.  The point is I am working towards a goal, which I can see has already improved my life.  I am no longer the young woman that can clean the house in one day.  I have to work with what I have.  And I feel blessed and thankful, because I am well on my way to learning to manage my life in a way that will fit who I am now.

The Process: Freeing Myself

One of the bad things about not having to get up and go to work is the temptation to goof off.  Ooh!  Did I actually admit to that?  Yep!  Today, I did get dressed in regular clothes after much contemplation on the subject.  I even had a list of things I did, but I have sat at the computer too long.  I just finished playing a rousing game of bursting bubbles, which I am sure must be good for the brain -- so many angles to shoot, as well as choosing colors.
 

As far as Day 3 goes in The Challenge, I already told you I wasn't going to be reading the suggested link, so all I had to do was repeat shining the sink and dressing to the shoes.  And since I have been making myself a To-Do list, I have some things checked off on that.   Also every month, Flylady has a monthly habit to work on for a few minutes every day, at least it will be a few minutes for me while I go through more paper clutter.  This is something I have been working on, off and on since last June or July.  You may ask, "How much can you have?".   A lot, when you have been married as long as I have.  I finally asked my husband if I could throw away some of the stuff he has boxed for years.  He was happy with that, and he is eager to get rid of the clutter too.  Word of Caution:  if you are freeing yourself of paper clutter, read FlyLady's List on what to do with it.  You don't want to throw away important papers.  Also, remember to work for only the amount of minutes you can work.  That may be anywhere from 1 minute to 15 minutes, depending on your health on any given day.   I found that starting gradually increased my strength.  Also, I am not losing as much this flare-up, because I have made an effort to do something physical each day.

How will cleaning up the clutter affect my illness?  I will feel freed, and I will be able to put my energies elsewhere.  I hope you are able to do the same.  And if you have no clutter, congratulations.  I wish I could say that.

The principle here is basically the same as my earlier recommendation:  build on the strength you have.  Start with baby steps.

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.  

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.)