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.

Surprised by Post-Exertional Malaise

 

It's strange that I am still surprised by post-exertional malaise at times.  As I lay in bed about 12:30 P.M. -- Yes, that's right--I sleep that late, and it is not unusual.   However, it wasn't always that way.  As I lay there, I could feel the light-headedness as I started to sit up, so I lay there and talked to the dog a few minutes more.  I told myself I could do this:  I could get up.

I made it all the way to the bathroom, my kitchen for a glass of water, and my recliner.  Now, I am sitting here, thinking I need to do a few quiet, easy jobs, or I will feel like my day has slid by.  I know what is wrong, but I really thought I did not do too much yesterday.  

However, I often pay for the day before;  but I think it is worth it, because I can see my house looking more like a pleasant home.  And I want that for myself and my husband.  I may be sick, but I am still a Proverbs 31 woman.  And it is good for me mentally and emotionally when I can accomplish some physical work.  Also, it keeps my muscles working for those of you that think the only way to exercise is in a gym.  

Be assured, I am not putting down gyms.  I have done and enjoyed that too.  But nowadays, that would be a waste of money for me, unless it is to pay for the use of a heated pool.  Unfortunately, there isn't one close enough for me.

Surprised by Post-exertional Malaise -- yes, still surprised, still disappointed when it happens, but I have accepted the reality of my illness, which beats denying it.  So I have peace and I wait it out -- again.  I think I will see if I can round up some of my marbles to get a load of laundry in and think about supper.

^{Proverbs 31: 26-31, King James Version (public domain)}

²⁶ She openeth her mouth with wisdom; and in her tongue is the law of kindness.

²⁷ She looketh well to the ways of her household, and eateth not the bread of idleness.

²⁸ Her children arise up, and call her blessed; her husband also, and he praiseth her.

²⁹ Many daughters have done virtuously, but thou excellest them all.

³⁰ Favour is deceitful, and beauty is vain: but a woman that feareth the Lord, she shall be praised.

³¹ Give her of the fruit of her hands; and let her own works praise her in the gates.

Courage to Leave the Room

Fibromyalgia and Chronic Fatigue Syndrome are energy drainers.  People who have FM and CFS do not have bodies that produce energy as quickly those who have healthy bodies.  Therefore, even when you are feeling good, you have to remember to pace yourself.  Listen to your body when it starts telling you you have had enough of an activity.  If you have been sick for very long, you usually sense when it is time to stop whatever you are doing.

However, I know it is often hard to just stop.  If you are in the middle of an activity, you want to finish -- at least, I do.  Therefore, consider yourself in the midst of retraining, which will take as much persistence as the goal to complete a task.  A good example of this is my return to choir rehearsal, which is something I want to do, but I often am  without the energy to be a regular member of the choir.  I am blessed to have developed good musical skills over the years, so our minister of music is happy when I can be there.  However, when I am there I often give out before the end of choir rehearsal -- even if I was careful during the day to save energy for it.

So what do you and I do if we give out during our activities?  In my case, my outside activities are volunteer, and the other participants "know" I am ill.  Supposedly, that should make it easier for me to do what I need to do to be able to do, which is rest;  however, my pride gets in the way.  It is embarrassing to get up and walk out of the room before the last song is sung.

Last night, I arrived at choir rehearsal early, which eliminated the stress of feeling rushed.  I was able to leisurely get my music and my rehearsal format, then find a seat.  I enjoyed chatting with other choir members as they walked into the room.  --so far, I was alright--  I  listened to the devotional and sang through the first few songs.  Then, I felt it:  panic attack or chronic fatigue.  Which was it?  Usually, I know;  however, it was mild;  so, I stopped singing and tried to relax.  I felt like I needed to leave the room and go home.  But, I was getting closer to the end of the hour long rehearsal, so I stayed, which was a mistake.

My body was telling me, "Rest, Deborah."  And like so many other times in my life, I didn't have the courage to leave.  I was too worried about what other people would think.  Moreover, I like to finish what I started, but I cannot always do that in the allotted time.

Image Courtesy of [Sattva] / FreeDigitalPhotos.net

For those who have read Got All My Marbles?, you are familiar with counting marbles for the activities, that you do during the day.  When I do remember to move my marbles from one bowl to another, it is an easy way to pace myself.  It is a visible reminder, I need to slow down or suffer the consequences, which could be anything from disturbed sleep to having a flare-up.  I thought it might be enlightening to count my marbles in what I thought was a not too heavy day.  

1.  Make brunch  2.  Check email  3.  Read friend's blog, comment  4.  Check social media  5.  Respond to comment on my blog  6.  Write blog post  7.  Send blog post to various social media  8. Shower, Dress  9. Put on makeup, Blow hair dry, style   10.  Scrape out peanut butter jar and eat, fix ice water and waffle, eat on way to rehearsal  11. Hunt for umbrella, secure house, walk to rehearsal in drizzle  12.  Choir Rehearsal  13.  Walk home
14.  Scrub and cook potato in microwave, cut leftover roast, get out vegetables, heat my  meat and vegetables, fix bake potato -- finally sit down and eat supper.  15.  After an hour or so break, wash dishes by hand, wipe off counter, and shine sink.     

Image Courtesy of [Maggie Smith] / FreeDigitalPhots.net

It's obvious I went over 12 marbles, and as you know from your own daily lives that does not count the incidentals during the day.  Some things, don't seem to take as much energy, but I think you would be surprised how much thinking and emotion figure into the equation.  That's probably no eye-opener for you, but I think many of our healthy friends and family don't understand how all these things add up to affect us even into the next day;  nor, do I  think our healthy doctors understand how we feel.    

So I didn't walk out of the choir room when my body was telling me go home.  After last night, I think that is going to change.  My choir director, who is also my husband says do what I need to do.  He knows my work at home is affected by everything from overdoing to weather.  

The point is you and I are the ones responsible for doing what we need to do, so that we do not throw ourselves into a bad day or a flare-up.  Even then, when we are pacing ourselves, there are often outside factors that affect our energy that we have no control over.  I encourage you to plan ways that you can rest or back off when you need to.  If you are able to go to the zoo, find a bench or a table in the shade to rest.  Don't be afraid to tell your family that you need to go back to the car to close your eyes.  Sit down on a bench in the grocery store or use an electric cart on those days you are extra fatigued.  Forget about embarrassment.  It is not other people's jobs to judge what we need to keep our bodies functioning.  However, it is our privilege and responsibility to exercise self control and make good decisions.  This will help to make you a better family member, neighbor and friend.  It will give you more energy to use in serving others.  To lead more satisfying lives, FM/CFS patients need to incorporate the techniques that help us pace ourselves in a realistic way.

Taking Time for Me

Do you feel guilty the day after you have done something special with your family,

 and you have used up the energy

 you needed to go to work or to do housework?  

Do you wonder why your mood feels off center, and you don't feel like getting dressed or doing your daily routine?  

Even though you may have been dealing with Fibromyalgia and/or Chronic Fatigue Syndrome for a number of years, do you have selective memory, only remembering the things you think you should do?

Your brain becomes extra sensitive to too much sound, so you turn off the TV.  The dog keeps barking at the delivery man, and you want to jump out of your skin.  Your skin burns, your clothes feel scratchy, your mind can't stay focused on what you should do next.  Moreover, you need to go back to bed.

  And you feel depressed.  

These are some of the things you may feel with post-exertional malaise, fatigue brought on by date-night, going to the park, playing with the kids, having company over for supper, staying on the computer too long, 

or going shopping.  

You can probably think of dozens of other things that cause PEM.  Maybe, you didn't sleep long enough.  Maybe, 

you cannot pinpoint a reason.

What can you do to overcome the depression that occurs when PEM strikes again?  Let the feelings out.  It's OK to feel the feelings:  they are real.  Talk to a friend or family member.  Paint or draw a picture.  Write a poem.  Feeling the disappointment is not negative self-talk, but it is a normal reaction to abnormal health.  If there is nothing you have wanted to lose yourself in, it is alright to nap during the day.  Maybe, there is an easy craft project you have been wanting to do for a long time--but you don't have to do anything if you don't want to.  Let this day be yours to do what you need to do to rest and to clear your fogged brain.  

No one can tell you what that is, except yourself.  That's what I did -again- for the umpteenth dozenth time in my life.  And guess  

what!  After I figured out why I felt the way I felt, the guilt went away by applying positive actions to my day;

 which were as follows:  

a nap, dressed and put on light makeup, made the bed, wrote a poem and drew a picture to go with it, mod-podged a top to a jar, and read a book.  Basically, I read and did things I enjoyed.  The poem and picture were my "art therapy."  

Disclaimer:  I am not a medical professional.  My writing is based on my own experiences and what I have learned over the years through counseling and reading. If you are experiencing symptoms of depression or have a medical question, you should consult your medical professional.

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.