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.

Too Much Input?

Image Courtesy of [marin] / FreeDigitalPhotos.net

Yesterday, I wrote a different kind of clutter in Saying Bye to Clutter.  I called it mind clutter.  The idea of mind clutter being a part of this technological world is not strange at all.  We are connected to the world-wide web, the television, and loads of reading material.  We have jobs, families, and house work to do.  We are constantly barraged by a cacophony of advertisement, telling us what we need to have or not have.  The buzz seems incessant, this unceasing world of shoulds and desires.  It is overwhelming, and we do not even know it.

Today, I turned off the television, but not forever;  however, I almost wonder if I should.  Immediately, I felt calmer without the noise coming into the room.  Can you identify with this?

Adrienne Dellwo has written an excellent article on Sensory Overload in Fibromyalgia.  Much of what is said for FMS seems to be true in CFS too.  In fact, it can make one wonder if it is the same illness;  however, I know I had the symptoms of FMS long before I had Chronic Fatigue Syndrome.  When you look at sensory overload, it is comparable to other conditions that also are affected by too much input, such as Autism or ADD.  Focus is lost when you have too much information coming in.  

Causes of sensory overload could be:

• bright lights
• flashing lights
• noise
• crowds
• chaos at home or what feels like chaos too you
• busy stores with the noises, the shelves filled to the brim, the bright lights
• multi-tasking, such as watching television and using your computer at the same time
• working in a busy office with constant demands on your time and attention 
• riding in a car and feeling the constant jiggle and hum of being on the road
• situations that are out of the ordinary, such as having visitors or repairmen coming to your home
• hearing the multiple sounds at a sports event

Image Courtesy of [Stuart Miles]
FreeDigitalPhotos.net

I am sure there are more you could name, but this is just a sample of what might set off an anxiety attack or even brain fog.  Moreover, too much sensory overload is physically draining. It is important for you to know when it is time to turn it off, lower the volume, or leave the area.  Give yourself a chance to recover.

Unfortunately, that is exactly what you do not do at times, because you use the noise to shut out the loneliness of being ill.  I can say this, because I have experienced it.  I have been using some of my energy on things that are not far from the things I want to achieve.  In fact, I used to spend more time meditating and also accomplishing more in the house and my life.  This tells me it is time for reassessment.  

Do you find yourself constantly filling your brain with the diversions available today, but not using your body?  Wow! I just got dizzy, because I am having a minor panic attack here.  I think I just hit the nail on the head for me.  I realize there are times that one is absolutely unable to do anything other than sit, eat, sleep, take a bath, and minor daily tasks.  However, are there also times you don't make the effort for one reason or another? 

Maybe, you are undisciplined?  

• or stuck in a rut? 
• or mesmerized by the constant sight and sound on the television or computer?
• or burying your loneliness and frustration by covering them up?

Perhaps, your life is well-balanced and able to do everything in moderation. However, not everyone is able to say that.  It is so easy to slip and not even realize what is happening.

Whether, then, you eat or drink or whatever you do, do all to the glory of God (NASB) 1 Corinthians 10:31).

I memorized this verse years ago, but sometimes I forget to apply it to my life.  But it is so applicable.  Moderation and balance in our lives is necessary -- even more so in having medical conditions that have so many annoying symptoms.

1 Corinthians 6:12 says, “All things are lawful for me,” but not all things are helpful. “All things are lawful for me,” but I will not be enslaved by anything (ESV).

Image Courtesy of [anankkml] 

FreeDigitalPhotos.net

Whether you believe all the Bible is true, as I do, you must see the wisdom in these statements.  Moderation is the opposite of too much input.  It is the opposite of excess.  Moderation in all things helps to promote balance in our lives.  May you and I find this, even though we may slip at times.  Be ready to say, "Stop!  I need to look at my situation." 

That's what I am doing right now.  This is part of finding balance.

Thinking of you, 

Deborah

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).

Weight Gain and Chronic Fatigue Syndrome

Old habits die hard, and it may not be the habit you think I am about to mention;  because, the first thing people usually think of when they see the words weight gain is diet.  Diet in the sense of going on a diet to lose weight is not what this post is about.  It is about the habit of thinking I need to go on a diet and lose weight being a trigger for frustration and thinking negative thoughts about myself.  

When you are struggling with the fatigue of CFS, it often becomes an emotional struggle when living in a world that equates the weight of a person with health and beauty.  In my own life, it is true that a great deal of my self-esteem was wrapped up in how well I was managing my weight, so when it became hard, seemingly impossible -- I felt responsible for my own weight gain.  I was responsible in my mind;  therefore, I had let everyone down in my life, including myself.  Yep, old habits die hard.

If you  have had difficulty with this issue in your life, and you need gentle sensible encouragement, I would like to recommend an article I read today, while I was searching for a CFS/FM weight loss group.  The name of the article is Chronic Fatigue Syndrome, Fibromyalgia, and Weight Gain by WD.  It was just the positive approach I needed to start thinking clearly on this matter.  I had let my emotions override a positive approach to my dilemma:  I needed input to get back on track to take care of myself, not to lose weight.

I have held on to clothes with the idea I would someday lose forty pounds or more.  However, I think it is time to let them go.  Why do I berate myself, when I try to do what's healthy, but I still stay overweight?  And for my Christian friends out there:  yes, I do think my body is the temple of the Holy Spirit;  and, that includes my brain and all parts of me.  However, I do myself no favor by being unrealistic.  Before I had CFS and I just had fibromyalgia, it was easier for me to lose weight.  Before I was fifty-five, I was able to fight this thing harder than I can now.  I have afflictions that I did not ask for, nor do I believe I caused them in the sense most people equate cause and effect of becoming overweight.  

I am facing the fact I am ill with several afflictions that make exercise and weight loss difficult and nearly impossible.  Therefore, I am going to keep moving as long as I can.  I am going to continue to stay on a moderately low-carbohydrate diet to keep my blood sugar as near to normal as possible.  An aside here is that I  am diabetic and keeping my A1C level within acceptable ranges without medication.  In fact, I asked my doctor why he doesn't have me on medication for diabetes.  He said my blood sugar would go too low.  What this tells me is that I am doing well.

You have to put together the facts of your illnesses and go on from there.  That does not always mean weight loss is going to be maintainable with some illnesses.  You know your situation with all the variables;  and, those variables are different for each person that has CFS/FM.  You have to make your decision based on what is right for you, not for Everyman or Everywoman. 

Remember that when you start to feel low about your lack or your excess of pounds.  

Finally, I am making my decisions based on the fact I know it is unhealthy for me to be consumed with weight as a gauge for my self-esteem.  I will balance my lifestyle as best I can within the parameters facing me.  

What will you do?

(If you were looking for a weight loss plan that is sure fire, I am sorry I cannot give that to you.  I  know many weight  loss plans:  sometimes, I feel like an expert.  Believe me, if I could come up with something that would be a cure-all, I would probably be doing it;  however, I have to make my decisions based on what is right for me.  And right now, I'm  resting in that and I am resting in my Lord.  God bless you.) 

(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?

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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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.

Not Your Fault

February 3, 2013

S L U M P or schlump (pronunciation shlump).  Have I mentioned that word too many times?  I feel like I have it stamped all over me.  On my forehead there is this stamp in red that is glowing "slump, bored, fibro-fog, shake it off, and why me?.  That is just the way I feel with the mire sucking at me:  I can picture my tortured feet trying to walk through the mud to get anything done.  And then -- there is that strange wonky feeling that I'm just a tad off, but if I got up I might be OK, only I cannot get up.  Or I won't get up.  I'm not always sure which it is.  However, if I wait it out without getting super reactive over my unwanted wonkiness, I will eventually be back to a higher level of functioning.

At least,  I know I am not the only one with Chronic Fatigue Syndrome and Fibromyalgia that sometimes feels like this.  I was feeling frustrated, so I thought I would look up some articles on motivation.  The first one was written in lettering so large, I knew I would be scrolling the page forever.  Yes, I know I can change the print, but that blog post was not about the motivation problem CFS and FM patients get.  So I changed the words in the search engine and ran across one of my favorite writers in the area of FM and CFS.  She had an explanation and suggestions that make sense:  It's easy to feel lazy when you just don't have the motivation to do something.  This probably is more of a physiological problem, possibly related to neurotransmitter imbalance, than it is outright laziness... ~Adrienne Dellwo~

February 7, 2013

I have been able to say, "Oh, happy day..." for a few days.  I have still been fatigued, but I have not felt like all productive activity was lost. I am dealing with fibromyalgia aches in unusual places, but not pain that has been incapacitating.  At least I think they are all FM;  therefore,  if I don't have some relief soon, I anticipate a doctor's appointment.  Something important to remember, when you have an illness like FM, is not all pain can actually be attributed to the disease*.  Today is a cool, damp, rainy day in my neck of the woods;  therefore, I am not at all surprised that I feel achy.  I have had Fibromyalgia long enough to know my triggers (most of the time).  Sometimes, I am surprised;  or maybe, I have just forgotten. 

Sometimes, I have to use a cane when I first stand up, especially if I sit too long, but I think that is due to arthritis stiffness in my knees.  However, fibromyalgia can also cause unsteadiness;  so combine that with arthritis, and you have a double whammy.  Considering I have an artificial joint in my left hip and thigh bone, I would rather be safe than sorry.  Once I am on my feet and have gotten those arthritic joints warmed up, I usually discard the cane, putting it beside the chair I sit in most often.  If I didn't I would surely forget where put it.  The lovely thing is I can smile when I say that.  I hope you can too.

*Unless there is a new classification, FM has not yet been classified as a "disease", but as a "syndrome";  however, I call it a Disease, because that is what it feels like to the people that are afflicted with FM.

If I Could Delete It...

If I could delete self-doubt entirely, would that be wonderful?  The reality, is that self-doubt often creeps in when I least expect it.  That is why I deleted my last blog post on my dressing principles;  even though, I knew I wrote those principles seriously, wanting to encourage those of us who have body-types that have blossomed outwards due to struggling with our illnesses.  However, that old enemy "fear" creeped in, and I felt uncomfortable leaving that post for others to read and judge.  

Have you ever worried something you meant for good, would give the wrong impression?  Or have you ever thought people you know might actually think you were self-centered or even worse, a hypochondriac?  The reason I ask this is most of us, who have Fibromyalgia or Chronic Fatigue Syndrome, deal with the fact that we don't look sick.  That is where the term invisible illness comes in.  And as I am sure most of you know, there are other illnesses that also fit this category.  I want to suggest that we should not worry so much about what other people think, because we cannot control their thoughts.  Nor, do we really know what they are thinking unless they tell us.

For instance, I deleted my blog post, because I saw that only nine people had viewed it.  So I decided that people did not like it.  I began to feel embarrassed that I had tried to encourage people by two methods:  writing and photographs.  I don't actually know what anybody thought.  Not one person left a comment, which is not uncommon in the world of Blogdom.  Many people read blog posts, which they may like or not, and do not leave comments.  However, maybe I was just embarrassed to have put all those photographs there -- it sounds kind of silly, when I think of my intentions for having put them there in the first place.  I put them there, because I want to encourage other people with chronic illnesses to know several things:

1. Our lives may feel like they're on hold when we are sick, but they are not.  We can live with our illnesses, even though our lives have changed.  If you haven't gotten to this point in your life, where you can really believe this  -- give it time.  
2. Sometimes, when I am feeling down or depressed, I have a hard time believing number one in this list, but I know it is true.  This is my life and I am finding my way with God's help.
3. If I could delete my illness totally, I might not be the person I am today.  I might not understand what people with chronic illnesses go through:  the frustrations, the pain, the loneliness, the depressions, or the joy and understanding that has entered my life through pain.
4. You are special and there is no perfect way to get through this illness.
5. Give yourself a break:  quit being self-critical, because you cannot do all the things you used to do.  
6. Listen to your body, and don't be angry with yourself over your lack of energy.  In my experience with Fibromyalgia and Chronic Fatigue Syndrome, it is not mind over matter that gets me where I want to go.  Sometimes, my body does not cooperate:  accepting this has helped me not spend my life in constant depression.  However, sometimes I still get mildly depressed;  but, it was worse when I did not understand why I get the ups and downs in energy level.
7. When you do feel better, take baby steps back.  It is true that we lose muscle-tone when we are too sedentary.  I notice this every time I come back from a flare-up.  

I suppose it is important to let you know that I still get frustrated too.  I want to be better than I am.  There are so many things I want to do, or I think I should do.  However, I feel like I am just doing the best I can with what I have.  It is the small steps that have helped me the most in dealing with my daily life.  Spiritually, it is trusting God and reading the Bible that have helped me the most.  And I don't do that perfectly either.  However, I have a Savior, Jesus that helps me deal with the things in my life.  He knows I am not perfect, but he loves me anyway.  I cannot apologize for sharing the most important person in my life, even though my love for Him is not perfect.  However, His love for me is perfect:  He loved me and you so much,  He did something He didn't have to do -- He died on a cross. 3 days later, he arose from the dead.  Yes, I believe the Bible.