Chronic Fatigue Syndrome or Depression?

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I wanted to introduce my new blog look to you;  and I thought I would add this picture, because I had thought about using it. However, though truly beautiful, it wasn't quite right on the header.

May we have many more blogs that give you a boost or good information.  Sometimes, I feel like I am about to run dry, but that is also true of Fibromyalgia and Chronic Fatigue Syndrome.  I am sure you know how it is to feel like you have dried up and the real you, though still inside, is buried under all the fatigue.

However, have you ever tried to figure out whether it was post-exertional fatigue that hit you or depression?  This happened to me during the last couple of weeks.  The desire to want to do things was there;  but so, was the guilt of thinking myself lazy.  I finally came to the conclusion I was depressed;  and yet, I wasn't in the way I was before I found out I had CFS and I was on a regimen for physical improvement.

Today, I finally got to the point where I did something I wanted to do -- change and wash the sheets and pillowcases on my bed.  It wore me out;  therefore, it brought me back to the depression versus fatigue question of why I find myself sitting in a chair most of the time.  People with depression are usually unmotivated and don't care about doing anything.   People who have CFS want to do things, but either do not have energy or run out quickly.

However, I know if I wait out the inactivity phase long enough, I will become motivated.  This leads me to believe it is the Chronic Fatigue Syndrome that has been making me feel off-balance the last couple of weeks.  Also, it happened after a week and a weekend with a mixture of activity;  cleaning, stress, both bad and good;  as well as having a wonderful visit with my niece;  and, going out more than I had gone out in two months.  No wonder I was sitting.

Does any of this sound familiar?  Do you sometimes get in a slump, which is confusing?  You do not know whether  it is depression, laziness, Chronic Fatigue Syndrome, or Fibromyalgia.  How do you handle your slumps?  Do you drag yourself out of bed and try to do the things you would do if you felt good, or do you rest?  Is there any particular thing, such as music, company coming, or ?????? that helps you to do at least a little bit of the regular chores?  I would love to know, because we are all different;  and, maybe you might suggest something that would help someone else.

Too Much Input?

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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]
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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).

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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

Rare Burst of Energy & the Fall Out

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Last week, I had a rare burst of energy.  I wasn't sure why.  If there was something different that had caused it, I was ready to shout it out.  Unfortunately, My energy bubble burst early Saturday evening;  and by Sunday morning, I felt like I had been run over by a truck.

Just in case you are wondering about what I did that was different, here is a short run-down:

1. Saturday - I went to town with my husband and the dog.  We ate outside at a fast food restaurant, so we could let our big baby sit with us.
2. Sunday, I went to church and out to eat.
3. Monday, I took the dog to the vet, and came home with a new addition to the family, a kitten.  I went to two stores to get the things we needed.
4. Tuesday, I had to go to the store again, because Kitty had diarrhea.
5. Wednesday, I got my hair cut and I went to another store.
6. Thursday, I went to the doctor and the Habitat Humanity Thrift Store.
7. Friday was our electrical problem day and move the furniture day.
8. Saturday, my DH and I went to Walmart.  I had to walk most of the way in the store;  until I told my DH I was done, and he found an available cart.

I don't know if I was hit with new mommy gotta do it energy or what.  All I know is I was going out and doing more than I can usually do in a day.  It wasn't as if I had turned into Superwoman.  I did not get much done around the house, and I was dragging.  However, I was having a more normal daytime  schedule and going to bed at an early hour.  Now, it is a little hazy.  I cannot remember every detail -- of course!

But, I was thinking the post-exertional malaise was not going to hit, that I was suddenly pacing myself correctly.  I was in a feel-good bubble, that I did not want burst.  However, reality hit Saturday night as the fluish symptoms set in.  To top it off, I wish I had worn a depends to bed about 3 a.m. Sunday morning.  I was so tired and hurt so bad,  I had taken my new medication, which caused me to go into a deep sleep, and I did not even wake up in time to get out of bed to go to the bathroom.  

It would have been less bothersome, if I had enough energy left for church on Sunday morning.  But I had full-blown Chronic Fatigue Syndrome symptoms that morning.

If this was the first time I had been hit by an energy fall-out, I would probably be frustrated;  but, I have learned I have to go with the flow and wait until I get wound up or restocked with energy.  Meanwhile, I am dealing with numb fingers and a swollen right hand--well actually the digits on the right hand.  So, I will do my therapy for that and quit typing soon.  The pain is becoming quite annoying.

The good thing is I can still see today is a beautiful, cool, fall day.  Also, I can alternately rest and do small chores.  I added some new ones with the kitty addition;  but as she lays here quietly asleep on my chest, while I write, it is sweet to know she is  already an enjoyable part of our family.

Today, I should be able to do my 15 minutes of decluttering and fix cabbage rolls for supper.  Also, I plan to get a load of laundry going.  I haven't been able to do all the jobs on my cleaning schedule, but I have had some extra last week and this week.

Finally, this kitten seems to belong.  She is friendly with our dog, and our dog has been accepting of her presence in the household.  Also, it is forcing me to relax, instead of pushing.  I simply have to close my eyes and breathe slower.

It's Getting Better, Like I Knew (Hoped) It Would

Weekly chores are difficult to plan when you do not know how you are going to feel from one minute to the next.  You can barely stand taking care of yourself, but now you are being reminded there are other things that need to be done.


One of my favorite jobs is writing articles for my blogs;  however, I haven't been able to handle as much writing lately.  Such is the nature of Chronic Fatigue Syndrome.  When it hits harder than usual, one has to roll with the punches.



The truth is I have found the last couple of weeks depressing.  Oh yes, I have fought it;  but anybody that has been sick for years on end gets to the point that it seems too much to bear.  At least, I think most of us do.  That seems to be a normal reaction for anyone that remembers what it is like to be able to live a more active life.  

I could get into a confession time and list all the things that have gotten to me, but I'm not sure that would not be good for either you or me.  It would just sound like complaining.  So here is something better.

Something Good to Think About 

Today, I saw a real plus in my brain's need for simplicity, including clutter on a page.  I finally took the time to play with this blog a little.  Does it look less cluttered to you?  I hope so.  

I am still trying to figure out if I want to match my blogs a bit more, or turn them into one with different pages.  But, what I have found about pages is that you need more and more.  You would understand if you saw how blogger worked.  

For those of you who read my other blogs when I post something -- does it bother you they all look different?  I could use that input.  I have seen some lovely professional looking blogs, but I like being able to post other interests.  It seems to me, it is more like a library that you can choose what you want to look at, because I have them connected.  And the best part is that Blogger let's me do it for free.  I just don't see how I can beat that.  

Word press has free blogs too, but I have found blogger so very easy to use.  And, it is not hard to personalize  a blog on blogger.  I have played with it over the years, adding my own backgrounds on some of the blogs and my own headers.  I like having fun with my blog.  Yep!  And, artsy me loves to change things when I want.

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).

Sophia does, could I?

Lately, I have been thinking about exercise -- other than cleaning or walking through a room.    Now, that I am feeling better, I would like to see if I could work myself back up to some exercise -- carefully, of course.  I want to do some of the things I miss, like walking on the beach, walking in the park, or walking my dog around the neighborhood.  I would like to ride my bicycle too.  I really miss that.

Recently, I read about how the amazing, iconic actress Sophia Loren stays in shape in an article from  Daily Mail.  Let me draw your attention to what Loren says about how she manages her morning  exercise:

"I always wake up early and jump out of bed - sometimes not wanting to, because one can always find an alibi not to exercise - and then I take a walk for an hour."

"And as I walk round the park I always think, “Maybe round the corner I am going to find something beautiful.”

"I always think positively. It is very rare that you find me in a mood that is sad or melancholic."  (Read more: http://www.dailymail.co.uk/tvshowbiz/article-1383736/Sophia-Loren-76-dazzles-long-legs-tribute-show.html#ixzz2YDqwpchN  Follow us: @MailOnline on Twitter | DailyMail on Facebook)              

     
Reading this made me wonder if I could "force"  myself out of that bed, dress, drink some water, and baby step myself into exercising in the morning.  What would it do for me?  

Over the past 5 years, I have gotten more and more sedentary.  Arthritis was a large contributor to that.  However, I had a hip replacement a year and a half ago; and, my knees feel better after healing from an injury.  Reading Loren's words about how she does  what she does, made me think.  Could I begin to carefully build my strength, so I could do more than I am doing now? 

In fact, I have had this in the back of my mind all along -- the exercise part. But, I'm not keen on getting out of bed very early in the morning, because I often don't sleep well.  However, if I made exercise one of my first priorities in the morning, could I do it?  Would I gain more energy?  Maybe, I would feel more relaxed and less stressed.

Years ago, I would never have questioned those things.  I did gain energy when I exercised, but that was before Chronic Fatigue Syndrome hit me.  It is admittedly a precarious balance.  However, I have already gained energy as I do more things around the house.  I have been using steps more, and building muscle in my legs.  It seems like it may be time to try to add more.  The thing, to be mindful of, is not to jump into too fast.  Baby steps are the way to start exercising.

No challenges are going forward here.  I would not dream of doing that, especially when I haven't tested this out myself.  If there is a challenge, it would be for me to say to myself:  there is no failure in trying.  And, I might have more energy if I don't wait until I am already tired.

After all, I can always take a nap. 

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.) 

Chronic Fatigue Syndrome and Relapse

Raindrop on Wisteria Vine

Hello my dear friends and readers.
 It's terrible that I just had the thought,
 "Lord, why don't you just take me
now?  I am so tired of being sick."  The Chronic Fatigue Syndrome has taken over it seems.  I am hoping it is just a relapse, and I will get better.

Have you ever felt like that?

Sometimes, it feels like I have been sick forever, and I want to tell myself to snap out of it;  but the body doesn't cooperate.  Just in case you are having a relapse, I am going list my symptoms;  because I know how it feels to be alone even when you have a loving friend or spouse.  But how can they really understand, when you yourself doesn't understand why you have to feel like this?

My Doggy Comforter

By the way, for anyone that thinks these symptoms are psychological--that does not make sense.  I have so many things I want to do, and I am struggling to do the basic things in life right now.

My dad used to say, "What doesn't kill you, makes you stronger."  This has made me stronger spiritually.  You see, the Enemy would like us to give up the fight, but my God is a god of hope and grace.  I may be going through a difficult time, but absolutely nothing can separate me from Him.


However, my body feels weak now.  And I have moved from not being able to sleep to falling asleep in the daytime.  Here's a list of symptoms -- I may forget something.

• sore throat
• swollen lymph nodes or gland in my throat area
• joint and muscle pain
• brain fog
• dreadful fatigue
• restless legs syndrome, but not all day
• sinus problems
• neck pain
• shoulder pain
• back pain, especially lower back
• weight gain
• low body temperature
• heat and cold intolerance
• tinnitus
• anxiety, but not all the time
• hypersensitivity to sound, more than usual, but not every moment of day
• memory problems (short-term)
• dry skin
• light-headiness
• weakness
• blurry eye (but not all the time)

Thank goodness, I don't have every one of these symptoms every moment of the day, or I think I would go mad.  And I didn't add dry mouth, which doesn't help at night when you have to get up to go to the bathroom more.  I would not be surprised if I forgot something.

Anyway, I think it is time to focus on taking care of myself better and a little less on blogging and facebook pages.  I am going to be around, but I need to see if I can head this thing off and get back on track.

As far as stress being a factor, I have to admit to feeling a certain duty to tending the blogs and the pages.  However, I think I am going to give myself a break.  If I am feeling pressure about it, then that is not good.  One of the things my doctor before I moved told me was I should not work, because of stress.  But even though I am my own boss and not paid for writing, the A part of my personality has been pushing me.

There is a part of me that says, "You cannot let them down."  But if I don't take care of myself, I will not be here for you.  It is a conundrum.  So, I will vacation a bit from writing as often, or feeling like I have to.  This is part of balancing my life changes.

I know you understand, and if you are a subscriber you know when I write.  Also, I always post announcements various places.  I will see you later.  God bless and take care.
                                                                                                          Love, Deborah

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.

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.    

Example of Cognitive Dysfunction/Need for Renewal

If you have already read today's post, you would have noticed several errors in agreement or I left a word out.  I read it when I wrote it, and I did not see the errors.  However, I have also noticed that I have read a couple of things wrong today that I did not write, but when I glanced at them again, I saw the right words.  For instance, I wanted dried cranberries from my pantry today, but all I saw were the words cherries on both packages.  I turned around and looked again, and I saw cranberries on one.  I think this is an excellent example of cognitive dysfunction, which can happen when someone is more ill than usual or stressed.  I have had to be very careful to focus on one thing at a time, because my thoughts feel scattered. It is disconcerting when it happens, because I don't always have this symptom as strongly as I do now.  

I hope you know that even though I don't know all my readers, I deeply care that in some way your lives are affected for good by reading this blog, which I consider my home blog--or that you are blessed by one of my other blogs.  I love writing the blogs, which I consider not only a ministry, but also fulfillment of one of my dreams.  However, I am finding they do take a lot of time and energy, so I'm trying to learn to be more efficient in this area, but I am not there yet.


Most of you know I undertook my own challenge to try to do  Flylady's 31 Beginner Babysteps.  I knew it might take longer, and I thought I would be able to finish by Wednesday;  however, I have made the decision to go back to Day 24 today, and try to work on this everyday until I am finished.  Of course, one is never "finished" with housework:  the repetitive stuff of daily living always reoccurs.  Therefore, I am going to leave my blogs until last everyday this week.  There may be some days I don't write.  I do not know.  However, I know I need to have order here in my household, which is better than it was; but, I have not had energy to do what I was doing during the summer and early fall. 

I need to explore why I don't have the energy.  Is it the blogging?  I like to get them right, and I feel I owe it to you to give you a quality blog.  Is it because I am sitting too much?  I wasn't too successful with timing myself on blogging.  My mind has felt almost overfull at times with the needs of things to do.  Is it because I have forgotten to take all my supplements sometimes, even though I took the time to put them in a container for the week.  Am I being lazy sometimes?  Yes, I that thought still occurs in my mind sometimes.  Maybe, it is the insecurity that comes with chronic illness that breeds that question.  I have a highly developed sense of commitment, and it has been difficult coming to the realization I cannot do everything I think is important.  

Therefore, I can understand why people that do not understand the nature of my illnesses cannot understand why I have difficulty doing things that I once did.  For instance, even though I have tried, I cannot seem to get back into going to church every Sunday.  I believe this is an important thing for Hebrews 10:25 tells believers  not to forsake assembling together.  Corporate worship is an important element in the Christian life, as are teaching, preaching, and the ordinances of worship.  It makes me sad to miss this.  I have always wanted to be at worship, since I was a young child.  In fact, I have always been in a choir since I was 6 years old.  However, my sleep problems, the fibromyalgia, and the chronic fatigue syndrome have severely interfered with this part of my life. Moreover, I also believe that being a Christian is not just a Sunday exercise.  There should be communion with God in my daily life, wherever I am, so I do that.  But I am missing being active in my church and community.  If you would like to pray for me to be able to be able to worship and fellowship more with believers in my community, I would greatly appreciate that.

I will try to write one blog everyday this week, but I am not sure which ones are going to get the attention.  Maybe, I will spread it out.  However, I am not making any promises for this is going to be a week of spiritual renewal and concentrating on my household.  I think next Monday, the 12th of November will be day 31 on my babysteps.  I am going to have to take this one day at a time.  I am praying for strength and wisdom.

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.

One Lesson Learned, Two Dozen to Go?

How many of you have seen the movie Julie and Julia?  I need to add this to my list of favorite movies; for each time I see it, I enjoy it and catch something new.  I always get a kick out of the way Julie addresses the readers of her blog, so if I call you dear readers from time to time,  please indulge me and know that you are dear to me, and I cannot think of a more apt term to let you know I cherish you.
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Two illnesses that often walk hand-in-hand:  Fibromyalgia and Chronic Fatigue Syndrome

Courtesy of [Stuart Miles] / www.freedigitalphotos.net/  

 So, Dear Readers, I think I am finally learning  how to leave well enough alone.  Those of you who are learning to balance your lives, know exactly what I mean.  When you are extra fatigued and about to walk two steps back instead of one step forward in your health life, it is time to say, "NO!".  And I did mean to shout, because I have over-done too many times.  

When one has CFS it is a bit like walking a tightrope.  If you lean too far in one direction, you are going to fall off:  you might even find you are unable to train for a short time, because of an injury.  With CFS, the energy principle is in action.  A healthy person uses energy, rests, and gains energy;  however when one has CFS, it takes longer to replenish that energy than before one became ill.  And for the naysayers out there, who are quite likely saying, "Get real!  You don't look sick:  you just need to exercise more or you're lazy.";  I say, "Obviously, the only way you could possibly understand would be to walk in my shoes; and then, you would be devastated."  How I would like to be able to clean house in one day.  Or take a long hike.  It sure would be nice to hit the tennis courts.  And I would love to be able to visit my grandchildren anytime I can pick up and go, but I have to store my energy like squirrel stores nuts for the winter.  If I am not careful, I will end up with weeks or months that taking a shower feels like running a 5k.

Now, that I have that out of the way, I will get to the point.  Sometime very early this morning, I was contemplating improving/decorating my blog, but my previous experiences came back to me.  When I start messing around with the templates, I have to change font size, etcetera.;  and I end up spending a ridiculous amount of time and energy messing with my blog design.  It seems like one change leads to another.  I heard the voice of reason in my head, "Remember what happened last time.  Don't mess with it.  Leave well enough alone. "  It was about 3 in the morning, and I felt like my eyelids weighed 5 pounds.  My body ached all over.  I needed to relax, but I was so wound up from all the work I had done in the house, that was not about to happen.  I have noticed that my coordination is affected when I am that tired, and my brain is in a fog, and I my actions don't always match up with what I mean to do.  It's complicated.

I did not write this to complain.  I just want you to know you are not alone;  and I want the world to know that people with chronic or invisible illnesses do not have these illnesses because they are malingerers or hypochondriacs.  These are real illnesses.

And finally, I would like to hear from you.  There are many invisible illnesses, that are chronic, and change one's life forever.  If you hate posting comments on blogs, I will soon have a Facebook Page up and running.  God bless you and give you peace.

Deborah

P.S.  I will try to get the FB group up tonight.

         And for those of you who might be wondering, I am going to get back to the flybaby series
         of blogs.  I will catch you up on what I have been doing to get out of my moving mess, and I 
         still want to get all those daily routines down.

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.

Seeing Progress

Seeing progress is a great encouragment;  however, people that have Chronic Fatigue Syndrome or other disabilities need to balance their activities with their energy levels.  Moreover, they have to remember that output doesn't equal input when one has CFS. 


The above statements are things I have experienced.  For instance,  the second sentence states "output doesn't equal input."  That means recovery, after one has expended energy, takes longer than someone that does not have CFS.  I have to consider the effect of work on my hip joint too.  If I overdo, I pay in pain. So I rest often, and I consider this a normal part of my day.  I may not get all the things done on my To Do List, but I can go back to it:  knowing this keeps me from worrying that I will never get done.


Working in 7, 10, or 15 minute blocks of time can also be helpful.  If I am dealing with a more fatigue, I work in 7 minute increments.  That may not sound like much, but it's surprising how much can be accomplished when one works and rests in blocks of time.  Adjust the blocks according to your own needs.  You will see progress over time.  Just try not to add to what you have started to clean:  that means pick up after yourself.  An example would be hanging a clothes item up, or putting it in the dirty clothes, rather than throwing it on the floor.

Resting Is Doing Something

I would love to follow FlyLady's 31 Beginner Babysteps without any break in the chain of habits I am establishing;  however, that is not always possible.  Since I have Fibromyalgia and Chronic Fatigue Syndrome, there are days that I do not have the energy to accomplish the things I want to do.  In fact, that was the beginning of me learning how to balance my life changes.  Now, I am dealing with hip and ball joint arthritis too, so I am glad I don't suffer from the guilt that used to consume me when I went through the months of having no energy to do anything.  The negative thoughts, which  would come into my head telling me how worthless I am.  That would fan the flames of depression, and I would get caught in a cycle that made me feel stuck and worthless.

I am so thankful for learning to speak kindly to myself.  FlyLady's acronym FLY,  finally loving yourself, is an apt description of what I am doing.  I am learning I can accomplish things in very small steps, that are appropriate to my energy level.   When I do a few minutes of one thing on my To Do List, it is reason to celebrate.  I feel like I have accomplished something, which leads me to do something else.  Some days, I have to put the brakes on, or I pay with increased pain and fatigue. 

And some days like yesterday, I have to stay off my feet because of the pain; and I let my body rest.  I push away any feelings of guilt, knowing that because of the small things I did yesterday, I am that much closer to having a clutter free house.

P.S. Why do I say, I am learning,  instead of I have learned?  For me, learning to balance my life is not something I can jump into and say I am done.  It is a process I started with very small steps.  There is no magic pill that will help me change instantly.  As much as I would like that to be true for me, it just isn't.  However, I can see that the concept of baby steps works in my life.  I can see the changes in me, and how I handle my infirmities.  It has taken several years of trial and error, of searching, and of babysteps for me to feel good about myself.  Am I doing it perfectly?  No, but I am doing it:  I am in the process of learning to balancing life changes.