How I Discovered my Post-Exertional Malaise Was Not Depression

Since I was diagnosed with Fibromyalgia and with Chronic Fatigue Syndrome in spring of 2008, my life has been a series of ups and downs and of opportunities to learn from my experiences.  Adding aging and a couple of other chronic medical conditions to the mix, my life has been a challenge to say the least.  At my point of collapse in September, 2007, I had struggled with pain that had increased in frequency and magnitude.  I had fought depression with the suggested tools of my doctors--counseling and antidepressants, and I blamed my fatigue on depression.


However, now that I understand what has helped and not helped me,  I realize that everything that had been going on in my body up to that time was interrelated, and that includes the depression.  I am not going to get into what helped me in 2008, because that is not really the purpose of this post.  What I want to say is that I mistakenly thought that Post-Exertional Malaise was Depression.  I thought I was fatigued, because I was depressed.  However, I really think I was depressed, because hormones and other functions of my body were out of balance.  That was one of the reasons the anti-depressants did not keep me from getting "depressed."  My doctors blamed my inability to get things done on depression;  however, my "lack of motivation"  was because my body was not working properly.  I simply did not have sustainable energy.  Also, I did not understand that every time I had enough energy to get things done or exercise, I was taking myself past a point I could recover from, so I was frequently in a state of relapse.

If I had not taken charge of my own health, found doctors that look past the depression, and had not continued to study and research how to handle my fibromyalgia and depression, I doubt I would feel any better now.  Through much prayer, as well as reading, when I felt well enough to get through the brain-fog, I finally found a doctor that looked at everything that was going on.  And, even after that, I kept learning to manage my medical conditions and my life, sometimes doing it well and sometimes not so well;  but, I never gave up.  In saying that, I have to be clear that there were many times I felt like it was too hard.  However, there was always that hope in my heart that God would cure me or help me find something that would strengthen my body.  After all, I had been this way for a very long time.  In fact, I now realize that I cannot say for sure how long I had fibromyalgia, but I suspect I had it in the 1980's.  Now, I think I have had it for a much longer amount of time than that.

Some people look at illnesses like Fibromyalgia and Chronic Fatigue Syndrome as the results of deconditioning.  However, I see that as an insult to those of us who exercised and did hard physical labor until they could Not!  Sure, my body has become softer and flabbier over all the years that I was unable to do regular exercise;  and, that is a Result of my illness.  My illness is not a result of being a couch potato.  Prior to  what I call "the great collapse", I was a person that pursued physical fitness, because I simply loved being active.  I loved playing tennis, dancing, and going to jazzercize classes.  I loved swimming.  Also, I was regular runner before I hurt my back.  I loved rowing, ballet, modern dance, bike riding, volleyball, and hiking with my family.

So, let me repeat, the deconditioning of my body was due to Not being able to endure sustained physical activity.  Moreover, every time I had even an ounce of energy, I tried to get back to my former life, and I could not do it.  There was always the relapse.

My very long introduction brings me to the purpose of this article, which is sharing Adrienne Dellwo's latest post from About.com with you.  It brought back the memories of all I have been through in this journey, including what I have found that has helped me the most.  I think one needs to understand Post-Exertional Malaise to understand this person who looks normal does not have a normal functioning body.  I have even heard that people who suffer with Chronic Fatigue Syndrome, also known as ME, feel as sick as someone who has cancer;  however, the cause of feeling ill is different;  and, CFS / ME  and Fibromyalgia are something one endures for years, often with finding little relief.  In fact, it kind of like an illness marathon.  Now, that is a horrible analogy, but it is long and hard to live with, so I think it fits.

Okay!  Enough of me talking.  I am going to post the links to Dellwo's articles, and I hope you read them.  Just knowing that an expert in scientific journalism takes the time to do the research is a comfort.  She is an excellent writer, and she has lived the pain.  Adrienne Dellwo knows what it feels like to have Fibromyalgia and related conditions, because she experiences it daily.

Causes of Post-Exertional Malaise in Chronic Fatigue Syndrome
What is Post-Exertional Malaise?

Post Script

Many of you know I have found supplements that help me.  They help me find balance, but they have not cured me.  Sometimes, we hear how well someone is doing after taking certain products, and we assume she is cured, because she has gotten her life back.  However, it is learning to manage her medications, supplements, and activities that has made the difference.  I cannot talk about my supplements in this article, even though I think they are the most wonderful thing since apple pie.  In fact, because of the assumptions we tend to make and because of being compliant with the regulations of my company, I can only tell you how much better my life is, which is considerable.  A year ago, I had my life changed.  I hope I never have to go back to how I use to feel all the time.

When Depression Hits

Depression is  a word that evokes uncomfortable memories for me.  For some people, it means they feel a little off or blue.  But the depression I am thinking of is a numbing, painful, I want to get away from myself.  The kind I am talking about hits at the heart of my motivation, and I used to feel  this way for day on end.  This description only gets to the basics of how depression feels, but when it hits, I have to wait it out.

Sometimes, I can force myself to do things around the house or get outside;  and sometimes I can avoid feeling it by reading.  It is still there, but my mind is off it.  I have done visualizations if it had to do with anxiety, as well as exercises that relax muscles.  I used to go on a good run, which raises endorphins.  How I miss that solution.  I sometimes wonder if my doctor would ever believe I was a slim runner, walker, hiker, tennis player, swimmer, dancer type.  How I miss being able to do those things.

Anyhow, every once in a while, I wake up and as the morning progresses, I realize I am depressed.  It used to happen all the time.  I am thankful it has not been that way much, not since I found out I have Chronic Fatigue Syndrome and have gotten treatment for it.  I wonder why this happens out of the blue;  but now, I feel a bit suspicious;  because I have not been as careful about taking my supplements.  I've been too busy with other things, and the supplements are usually what suffer.  Why I let this happen is beyond me, when I know they make a difference.

Perhaps, the reason I easily let the supplements go is that I do not remember to take them, unless I refill the weekly container, a job I dislike.  Maybe, it goes back to my dislike of taking pills.  I really don't know.  But that is one job on which I tend to procrastinate. 

Today, I finally had to take a pill for anxiety, and I had to go back to bed.  Sometimes, that helps me wait it out.  I also prayed for release from this, and asked God to surround me with His hedge of protection.  Hopefully, I will be back on track tomorrow.  I feel better tonight.

One supplement I will be taking everyday, which I have been leaving off is my fish oil.  I have heard it spoken of as soothing to the brain.  Whether it is or not, I seem to feel better when I take it everyday.  I know there has been research done on fish oil and depression with positive outcomes.  It certainly cannot hurt to take it.

Finally, I know this too shall pass, as it has in the past.  Tomorrow, I am hoping I will be able to feel more normal and I will be able to do things that need to be done, or even get out of the house on a jaunt somewhere, a mini-holiday.  The plethora of things, people have to deal with who have Fibromyalgia and ME/CFS seems to be never-ending.  Sometimes, we feel more normal, sometimes not.  It is literally a matter of flowing as the tide flows--our own seemingly crazy, dismal, prolonged illnesses. 

How I thank God for His joy that returns to me, and the realization this depression will not last.  It has hit before and gone.  I will wait it out like I have done so many times before.  Working through will be something I can do, now that I have gotten over the surprise of it blanketing me in gloom. There is joy in the morning.

It is of the Lord's mercies that we are not consumed, because his compassions fail not.  They are new every morning: great is thy faithfulness  (KJV, Lamentations 3:22-23).

(Updated) Digressing from Needing a Vacation: Hot Topic

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

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

Warning Before Reading This Blog Post

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

What I Need Is ... a vacation

Right now, I absolutely need a blog vacation:

I have already slightly indulged in it without the guilt!

A willingness on my part to only write 

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

Please indulge me, as the summer progresses,

And forgive me if I'm not often here

With an encouraging word. 

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

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

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

Because I lost a lot this past winter.

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

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

which is quite exhausting.

  

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

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

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

I would never want anyone to suffer

 through these stupid, hard to explain symptoms 

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

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

give it up -- everything.

Please don't worry, 

I am not depressed or about to

do anything like suicide.

I know what that is like for family.  

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

Who have momentarily lost their minds and do themselves in. 

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

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

But sometimes, I do get very tired of trying

To be healthier,

To keep a strong heart and mind,

Which I know is a gift from God.

I cannot do any of this alone, 

And for those of you who say, 

"God is a crutch!";

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

So if you think you don't need Him,

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

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

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

Yesterday, I went to the eye doctor.

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

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

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

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

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

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

I know it has been more than a month.

Anxiety ridden, I got to my appointment.

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

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

Philippian 4:6-7 to me.  

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

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

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

That will not be squelched.  

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

contract and relax muscles,

breathe slowly, hold my breath, and breathe again.

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

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

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

I cannot dance like I used to.

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

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

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

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

also, I  kept my weight down.  

But sometimes,
People get sick anyway.  Oh darn!

That's not fair!

Back to the eye appointment...

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

In a chair and out of a chair,

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

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

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

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

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

without someone to drive him or her.

What I Wanted to Do after the Eye Appointment

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

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

The three most necessary .

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

Thank you Chick-fil-A.

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

For our eldest daughter's education through their 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Second of all, I want to tell you that 

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

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

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

A word to you who have had 

the suicidal thought go through your mind...

It is not unforgivable to have the thought, 

nor is it unforgivable to have voiced it, 

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

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

and most of all 

you need to forgive yourself.

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

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

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

did not work for the family I grew up in.  

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

that you never talk about 

Family Business.  

Well, it is not just business.

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

are at least slightly Dysfunctional,

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

 well, most of the time I thought that.

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

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

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

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

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

All of this, and

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

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

♥♥♥♥♥♥♥

He did come home from work to check on me. 

And after I had a nap, 

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

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

He left a TV baseball game to do that.

Wasn't that sweet?

Needing to Temporarily Suspend Personal Research

There are days in the life of a person who has ME/CFS/CFIDS, one becomes over-sensitized by seemingly everything:  noise, light, information, surroundings, and clothing.  Fibromyalgia patients have the same problems.  My doctor said I have both, but really I wonder if it is one neurological disease that affects many parts of my body.

Who Is the Real Me? Please stand up.

Many years ago, there was a show on television called "What's My Line?"  I bet most baby boomers remember it.  The celebrity panel had to ask questions of three contestants and figure out who the real scientist studying the life cycle of beetles was, or which boy had a record contract.

As far as I know, I have no panel here, but I have been sick so long that sometimes I feel like asking, "Who is the real me?".  Sometimes, I wonder how much of my staying home has become agoraphobia and how much is the fatigue that goes with Chronic Fatigue Syndrome/Me.  Have you ever felt that way?  Do you feel like being sick has affected you psychologically, or you wonder if it has.  It is hard enough to have physical problems, but to have to fight the psychological affects seems altogether unfair.

I would like to share a comment I made on Holley Gerth's blog post, Your door Is going to open.  

First of all, Holley, I absolutely love that red door. I have been thinking about colorful doors: I may have to add that to my list of want-to-do’s-someday. Secondly, I needed that, and I am absolutely afraid to ask for help from people at church. I’m the minister’s (of music and senior adults) wife, and it is very embarrassing to me I have been a shut-in for several years. I make it to church when I can, but the people here don’t know the real me, the outgoing me, the one that wants to be out and about in church and around our community. There I said it. Sometimes, I think if I had a husband that didn’t have to leave early, I would find it easier to get to church, but is is exhausting. Sometimes, I feel so very alone. I miss having girlfriends to do things with and stuff like that. I miss entertaining and bringing people home for meals. I feel so stuck in this area, but I am hoping that will change.

I don't know how many of you feel like there are portions of life passing you by.  I am definitely in favor of living life to the fullest you are able.  However, if you have been sick for a long time and you have experienced many flare-ups and a lot of total exhaustion, it changes your life.  I don't think other people realize how lonely we can get for human contact, especially if we were outgoing people before we got sick.

The plain truth is that having chronic fatigue changes your life in ways we could never have truly imagined before we were sick.  I hope somebody reads this that is in your life, that does not understand;  because, it is so very hard.
Today, I close with tears in my eyes that our lives have been changed so dramatically.  We are blessed to have the support we have online.  Some of us have become friends with strangers from other cities, other states, and other countries.  We do know people that understand, because they have Fibromyalgia, Chronic Fatigue Syndrome/ME, Lupus, MS, POTS, or the various other diseases that suck away our energy.  

Gentle Hugs to all of you.  I understand.

Deborah

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Wondering How to Come Back from this Flare-up?

I want to be like this bee, doing my work
without having to think about it -- just do
it because it needs to be done.

Today, I am figuring out how on earth I am going to start being active again.  I have been so fatigued the past month and a half that I have lost more ground.  After a long period of inactivity, it is difficult to get moving again, especially adding housework.  And as you can imagine, it is also overwhelming.  I have been a pajama girl for long enough to make pajamas a habit again.

One of the things I abhor about flare-ups is the inactivity and having to make a comeback.  I am never sure how much I can regain, because one loses muscle tone during periods like this.  Also, it was not a flare-up alone:  it was illness on top of chronic illness that caused the flare-up.  My sleep schedule is a shambles, because it does not comply with "normal."  And, I have had to take frequent naps.  It is amazing to me, who has never been a nap person, that I need to lie down in bed when I was there two hours ago.

I feel like I need a month at the beach, basking in warm sunshine and taking leisurely swims in the salt water. Or at least floating in the salt water.  Right now, a wave would probably knock me over, because by the time I walked down to the beach, I would have to rest.  Sometimes, I wonder if I would feel better if I lived near the beach all the time.  OK.  That's an aside.  I have to grow where I'm planted, and I am planted in a small southern town in the USA, needing to manage another Chronic Fatigue Syndrome flare-up.

In my zeal to encourage my readers, I was hoping I would not have to go through this cycle of regulating my habits and pacing again.  I wanted to manage my illness "perfectly";  however, that is not my reality.  And I am longing to know if other people that have CFS/ME/CFIDS go through these huge ups and downs, or if they are able to slog through the flare-ups.  

As far as housework goes, I have cooked a few meals, done a few cleanups, and done some laundry.  Also, I have been able to do some writing, but I have had to get off the computer much sooner.  Even using the computer makes me tired.  I am already there and this post has been an easy one to write.  So there it is, laid out, admitted, and wondering whether this will ever end or get worse.  I need to close my eyes again.

Love you guys.

Is Chronic Fatigue Syndrome/ME Different After Age 50?

You need to read this, especially if you were 50 or older when you got sick with CFS/ME.  And if you were a little bit younger, read it too;  because if you are like me, you are not sure exactly how old you were before Chronic Fatigue Syndrome hit.  You just knew, that your illness had gotten unbearable. 

Part 1

Do you ever read an article and comments that seem so familiar, and they hit so close to home, you have an emotional response to what you read?  That happened to me today;  therefore, I have to share with you, because I admit to feeling disappointed at how my illness was misdiagnosed by medical doctors.

First of all, I think most MD's mean well.  They want you or me to feel better, but they only have a modicum of information.  Maybe, the patient doesn't say enough;  or perhaps, it is just too hard for them to believe someone that looks younger than his/her age and looks healthy could be sick with an incurable, unsupported (by all their training) disease.  So what, if the different body systems they test are in the low normal range--this couldn't affect a person so very much?  Therefore, it must be depression. Depression affects motivation and a person can feel fatigued, so send the patient to a psychiatrist. (Please know, that I am not trying to insult physicians, but that is what it seems like in my experience.  Sometimes,  I think I should have a fever or something when I go to the doctor, something the doctor can see.) 

So the patient, me or you, goes to a psychiatrist and a psychotherapist, as well as taking an anti-depressant and a drug for anxiety.  The patient feels better, but is not well.  Therefore, the doctor decides you cannot handle stress and should not work. 

However, there was a defining traumatic event in my life which I would rather keep private, that could have triggered a depressive episode (what it was is not necessary to know - we all have events that are different): there was the Fibromyalgia I had for years, the constant stress from a job that affected the entire family, serious viruses caught because my immune system was unable to resist them, the fight to get healthy again:  and then, there was more stress from dealing with family illness and subsequent deaths, and another serious illness and menopause.  Maybe these things contributed to the onset of Chronic Fatigue Syndrome.

Part 2

Basically, the above is a synopsis of my experience up to the point I knew something was wrong with me other than depression. I collapsed one day with such fatigue, I could not possibly go on.  Naturally, I was depressed and felt I could stand no more.  So what happened -- I was put in the hospital for 48 hours and told to go to a psychiatrist.

By then, I knew that was a waste of time, because I had already been down that road.   Also, my insurance would not pay for it.  I felt horrible, like I had influenza for months.  I could not function normally;  therefore, I quit looking for psychological answers;  and after much research, I found From Fatigued to Fantastic by Jacob Teitelbaum.  As I read his book, I saw myself.  I could hardly believe I was reading about almost every symptom I had experienced, and I had never been treated for Fibromyalgia or Chronic Fatigue Syndrome.  What an eye opener! (Before the depression,  I had a doctor that thought I had myofascial syndrome or fibromyalgia, but he never treated it.)

Finally, I went to a clinic that specialized in FM and CFS.  Each visit was very expensive, and it took most of our savings.  Insurance only paid for parts of the treatment, all the rest was out of pocket.  However, my husband wanted me to have help, and we took the one way, 3 hour trip to the clinic.  Every jiggle of the car was agony.  I hurt from the top of my head to the tip of my toes.  To make a long story short, going to the Fibromyalgia clinic made a difference.  Even though I am not well, I am in far less pain and have more energy than I had then.  At that time I had nada, zero, zilch:  I could hardly bathe myself.   I  have flare-ups, but I know things to do that help;  and, I have learned to be patient during those times, rather than anxious.


Part 3

The thing that I want to stress here is age.  I first began experiencing re-occuring fatigue in my mid-forties;  however then, I was able to get back some of my former activities, including tennis, swimming, working out with weights, and walking. However, I still struggled with depression, so they kept upping the dosage of my anti-depressant.  Every time the fatigue hit, I thought it was lack of motivation.  I even began to think I might be bi-polar.  Who wouldn't after all those ups and downs?

My huge "breakdown" occurred when I was fifty;  and, I now know why I felt like I could not go on with life as it was.  It was because I was very ill.  My whole body was breaking down;  however, I didn't have cancer or mental illness, I had Chronic Fatigue Syndrome and Fibromyalgia.  I am not going into the details of the abnormalities found in my blood tests, because I don't think there is anyone with FM and CFS that have exactly the same results.  However, I can tell you I followed my new doctor's orders and I got better.  With medication that helped with nerve pain, medication for hormones that were not in normal range, and supplements, I began to feel better. 

Guess what!  After I had been going to the FM clinic for several months, my depression disappeared.  One day, I realized I had not been depressed for several weeks.  I actually felt happy!  

The whole point is I believe the article I read today is correct.  The cases of chronic fatigue syndrome beginning after age fifty are different from those that begin earlier in life (Young Vs. Old: Different Type of Chronic Fatigue Syndrome, Adrienne Dellwo).  I think around age forty -five and up might be the onset for some age-related cases, and I believe there are probably many undiagnosed people, who have CFS.

I haven't given up hope, that one day I might find a way to minimize flare-ups.  However, I think a more realistic scenario is to admit I have an illness that will not go away without a miracle and to know I can have a happy life though ill.  I think finding help was a God-thing: it was an answer.  

Finally, f I had not been sick for so long, I might not be writing this blog today.  I have learned to live one day at a time and to be happy in that.    

May God bless you all,

Deborah

Living One Day at a Time

How do you know your attitude has changed towards how your illness affects your life?  When balancing your life does not include having to deal with constant depression, when you can smile about having to put your cane back in the same place to remember where you put it, and when having aches and pains don't make you angry -- you are learning to be content in your situation.  When I say content, I do not mean complacent.  When you can be content and happy despite the day's aches, pains, and events -- you have learned to live in the present. 

Living in the present can be a very good thing, because we deal with how we feel now, not yesterday or tomorrow.  For instance, I realize that I am feeling antsy this afternoon:  I did last night too.  So I'm not saying that you should just forget how you felt yesterday;  because if you feel the same way today, maybe your body is trying to tell you something.  Therefore, take a couple of minutes to think about what is going on.  What would help you in your current situation?

Sometimes, when one has Fibromyalgia or CFS, one's nerves seem to be on end for absolutely no reason you can pinpoint.  However, I know what is bothering me.  I have been spending too much time on the computer, blogging, or preparing something for a blog.  I need to move my body, do some household tasks, step outside for a breath of fresh air, and take a break from the computer.  I need to relax my mind:  my mind is reeling from all the things I think I need to do.

Back to Attitude    

Analyzing where you are in the moment is not an indicator of bad attitude.  It means you are taking care of yourself and figuring out how to balance your energy.  Realizing you are feeling a little off doesn't mean you have lost your happiness:  it just means it is time to smell the roses and look at where you are now.  Maybe, you just need to sit down and rest;  or perhaps like me, you have some things you have neglected for other things that seemed to take over your life.

Finally, those of us who have FM or CFS need to manage our energy.  So, if your problem is the laundry has piled up, you might not want to try to get it done in one day.  Take baby steps.  You can do one or two loads of laundry today.  Then, do another load tomorrow and the next day.  Sometimes, we make things so hard for ourselves.  We want to live our lives perfectly, doing everything we think we should do.  Watch out for living your lives with unrealistic expectations.  Remember, you can only take one step at a time.

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  

  

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 FlyLady.net 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.

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.

Questioning Why I Have a Difficult Time Doing Activities I Desire to Do

For the most part, I have developed an upbeat outlook on my life;  but, every once in while, I go through the questioning process again--because there is so much I want to do.  And--of course--I would like my life to be like it was when I was healthy.  Thank goodness there is support in the cyber world for those of us that have CFS/ME.  When I start questioning myself about why I don't get out of the house more or why I do not accomplish more around my home,  I read what other people say and I know I am not crazy, lazy, or alone.  I have an illness that I don't want, nor did I ask for it.

Today's article is a departure from my series on using FlyLady's techniques to help me simplify and boost my habits.  I found myself questioning again--feeling guilty for staying home when there are church services on Sunday to go to, funerals to attend, children to visit, boxes to pack for a move, and birthday presents to craft (that are late).  I miss my old life;  but when I try to return to it, I am broken down for months--too fatigued to bathe, pick up, do laundry, or cook.  I find it difficult to do the basic things most people take for granted;  because once I put out the energy, it is gone for days, weeks, or months.  Therefore, I am getting very good at conserving my energy for the things I must do.  I have learned to pace myself;  even though sometimes, I still get a bit confused over what I should do.

Today, I read something that helped me to put my life, as it is now, back into perspective.  I would like to share one of the comments left at the end of Adrienne Dellwo's article Understanding Chronic Fatigue Syndrome: A Simple Explanation--This Goes WAY Beyond Tired!.

 Every chore is like doing a marathon
I've had CFS/ME since 2003 and usually explain the symptoms to friends and family as a "never-ending flu". However, after doing stress exercise testing at the Pacific Fatigue Lab in Stockton California I have discovered a new way to explain it. The testing shows that Post-exertional malaise is so bad that the day after the maximum exercise test day #1 it looks like I had run a marathon, not exercised for 15 minutes. It shows that I don't even produce enough energy per day that is required (on average) to take a shower. That seems to be a good way for others to relate the CFS symptoms to their own lives.

—Guest missjanny 

I invite you to make this a conversation.  I have found it very helpful to read what others have to say.  Let's support one another.