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.

Can you take baby steps?

Picture this!  A dresser or desk that has not been dusted for four months is so dusty it actually has hair mixed with the dust.  Other things in the room were dusted, but there were too many things here that needed to be organized.  They were little things:  earrings, a discarded necklace, bobby pins, a makeup brush, a comb, a red tray that was so dusty it could not be wiped.  There was more:  a mirrored dresser tray bought to celebrate my first trip out after a relapse, a new bag of cotton balls, and other items found on a dresser.  It was a mess, and I did not want to deal with it.  I would wipe off a little area every time I put on makeup.

The week before last I started with cleaning the mirror.  I moved a few things.  I wiped a few things off and put them in the drawer.  Today, I sat down with a trash can and a dust cloth.  Some things I had to rinse off with water.  I have glass on top of the dresser, so I cleaned it with glass cleaner.  Now, I have a lovely dresser.  I won't feel like everything I put there is going to get dirty.

Every step I take on my journey to get rid of the clutter and clean is a kind of release.  I actually feel like I am resting easier, because I am taking baby steps that make a difference in my family's life.  I know it makes a difference in mine.

And my husband noticed, yes he did!

 

A Panic Attack Over Cleaning

Yep!  The title is true:  I had a panic attack over cleaning today.

Image Courtesy of [lamnee]/FreeDigitalPhotos.net

All I did was go to a popular cleaning site, and it started.  I knew I couldn't do all the things on there, and I
was pretty sure most of my readers would say, "You are expecting unrealistic things out of me if you think I can handle this.  Then I jumped over to a couple of blogs on cleaning and decluttering, but those seemed geared to healthy people.  After that I went to a book seller's site and looked at some of the cleaning books on there.  The panic attack went from small little vibes to heart pounding in the chest.

Stop!  Off the computer!

With my heart pounding, I walked into one of my messy rooms, set my timer for 10 minutes and started working.  Feeling pretty good about that, I set it for 10 more minutes:  then, I took my shower and had to hunt for clean summer pajamas.  So now, I have a no-brainer job for tomorrow:  do some laundry.

Image Courtesy of [Tongdang]/FreeDigitalPhotos.net

Why do we put off laundry?  Well, maybe you don't, and sometimes I do keep it up.  However, I let this get away from me.  We have two people here making laundry, and I have two hampers full.  That does not count the accumulating towels.

The plan for this week is to start catching up laundry.  I suggest doing no more than you will fold and put away, unless someone is going to be out of clothes to wear to work.  Laundry can be caught up doing one load a day.  The important thing is to get started.

That is only the beginning.  For more come to my facebook page, Chronic Fatigue and Creative Decluttering.

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

Perfectionism, Procrastination, or Both?

Image Courtesy of [scottchan]
/FreeDigitalPhotos.net

Sundays, I usually wait until the last possible moment to think about what I am going to do on Monday.  Do any of you do that?  Maybe, that is a remnant of wanting to savor the last possible moment of weekend family time or not wanting to face going to work or to school the next day.  Or maybe, it is my propensity for procrastination raising it's little head and saying, "You don't want to do that now, do you?  Come on, let's do something fun!".

At any rate, I am breaking the mold today, and popping procrastination's little balloon.  I was thinking about what to suggest for Chronic Fatigue and Creative Decluttering this week.  I still have jobs that are not finished yet, but it may not be accurate to think you are as slow at getting things done as me.  Even though, Fibromyalgia and Chronic Fatigue Syndrome/ME have similar symptoms, not all people who have these debillitating symptoms have exactly the same ones at the same time.  Therefore, according to age, other illnesses that affect you, life stresses, responsibilities, flare-ups, or coming out of a flare-up, we are not experiencing exactly the same things on any one day.  Sometimes, we do, because of weather or whatever, but there are multiple variables.

Because of the variables, I feel a responsibility to suggest areas to work in that we have not recently touched;  so I decided to look at FlyLady  on Facebook for inspiration.  I ran into a neat little article called Ducks in a Row,  that had neon words flashing themselves at me.  Marla had written, With our ability to hyper-focus and our perfection thrown in to boot, we have a tendency to want every thing perfect before we even start. How about that control journal of yours? You want it absolutely perfect before you begin to even think about establishing your routines. This is another excuse for not getting started. 

Again, I have been enlightened and reminded by Marla Cilley of some of the important things that most clutter-challenged people can learn to apply in their lives:

• Routines are a good thing, thus she helps people to establish a control journal.  My routines are in a plastic sleeve in my control journal and one on my bathroom wall.  Unfortunately, I cannot always stick to my routines, but being aware and having worked on them in the past helps me to get back on track.
• Perfectionism can be something that keeps us from even getting started.  Is this true in your life?  Does it keep you from getting dressed in the morning, tackling the mess in your bedroom, the spare room, or another area of the house?  Does it keep you from making a short list of things to be done in the house?  Does it keep you from your family or friends?  Or writing in your journal, writing a poem, or painting a picture?  What does perfectionism keep you from? 

Just a reminder: I know the chronic illness is often the thing that gets in the way.  When we are in pain and unrelenting fatigue assails our bodies, our routines often fly out the window.  We wonder how to get started up again, as we compare what we used to do with what we get done now.  I understand.

The best example I can think of right now comes from my own personal life.  About a month ago, I started getting rid of the clutter in my dining room, which is also my  workroom, and the most used entry into our house.  I had a goal, which included having the table and sideboard decorated for Easter.  However, as I worked, I realized I needed to organize my arts and crafts supplies or box everything;  also, I was working on a couple of blog posts for Deborah Lynne's Inspirations.  I had other things that had to be done too:  laundry, bathrooms that needed to be cleaned, blogs and Facebook pages to tend to.

 "What's the point?",  you may ask.  The point is not finishing the dining room did not kept me from working on it a little bit at a time.  I have done the necessary everyday things, which I can rarely finish in one day.  I do what I have learned from FlyLady.  I jump in where I am.  I try to do a little bit everyday.  On the days I feel better, I may do a little more.

An example would be the bathrooms I cleaned on Saturday.  I cleaned the sinks and counters in both bathrooms, and in one I wiped down the toilet.  I had done the inside and outside of the half bath toilet two nights before, so I concentrated on the things that needed cleaning the most.  I didn't do the shower in the big bathroom, because  it was too big a job for me to tend to that day.  Nor did I do the inside of the toilet bowl in the master bath, because I was plumb out of energy.  I thought I might get back to it, but I haven't yet.

The point is I have not let perfectionism keep me from cleaning my bathrooms.  It is not an all or nothing thing.  My house is cleaner than it was a month ago.  In fact, I was able to rest comfortably when I needed to, because I had cleaned the toilet bowl  less than a week ago.   I feel good about what I'm doing, because I am making progress.  Truthfully, I doubt my house will ever be as clean as I used to keep it when I was healthy.   But, that does not mean I have to give up.  Nor do I have to compare myself with people that are physically able to do more.  I am doing what I can do, baby step by baby step.

So, I want to say thank you to FlyLady, who reminded me  routines are good, I can have a cleaner house by taking baby steps, and I will enjoy the results as I gradually take control of my life again.

Focus and Distraction - Controversy? REally?

Oh no!  Did I do that?

Wow!  I did not expect my last post on Learning to Balance Life Changes to be a tiny hotbed of controversy.  I shared my last post on a couple of pages I frequent on a certain popular social media site, and someone felt spammed.  And I am so sorry.  I am not that computer savvy, nor do I have the desire to be a pest.  I don't like spam either.  And I would message someone or delete the post, rather than report it as spam;  unless, it was an obviously computer generated robot or it was objectionable, rude, crude content.  And I have to admit to having hidden some things that came into my page, because I don't like the language that some people consider acceptable.  But I certainly don't want to burn bridges to my friends.

If I post anything, it is to add to the conversation on the same general or specific subject;  and, I do it to be helpful.  For instance, yesterday, I thought what I posted might help someone see how I worked my problem, which was totally a part of my chronic illness.  I worked the problem by praying about something over a period of time.  However, I felt like I was near a breaking point, so I prayed again;  and, I finally had my answer.  I don't see that as a problem in dealing with chronic illness.  I see prayer as a plus.  That means you are giving it to God, instead of spending all your waking hours stewing over something. 

I am not having brain fog issues right now;  however, for a few moments, I wondered when I found my blog post removed from my own pages.  Well, now you may have guessed the social media; so I guess it is alright to say Facebook.  I think they do a lot of spam checking by automatic computer programs, so it is possible that the unnamed Page marked it as spam.  Isn't it amazing one can have that power on Facebook?  

People worry about stuff that gets on their personal pages. We can say no to things we don't want on our personal pages and our professional or wellness pages.  Also, it is good to let a friend know (in a nice way) if there is something objectionable coming from their page to yours.  Some accounts get phished (I think that is the right word).  Don't assume that something you see from a friend is actually from them, if it isn't in character.  I don't think we have to be afraid that will happen if we are careful about using passwords that are mixed with capitals, numbers, etcetera.  

I do think this blog should share some articles on handling Focus and Distraction.  The last article was one way to handle these kinds of problems.  And for the problem I was dealing with, that is what worked best for me.  
Sometimes, when that beast, brain fog, attacks, I have to also find other ways to manage.  So if you got cued wrong, I apologize.

Finally, I will never apologize for my faith in Jesus Christ.  I do pray about most things;  moreover,  I have made it plain from the very beginning of this blog, I will be talking about how my Faith is an important part of balancing my life changes.  And I whole-heartily recommend it to everyone.

Focus and Distraction: Managing Mine

Focus and Distraction:  do those words feel familiar?  Oh yes, I purposely used the word "feel", because I
have been dealing with this today, yesterday, the day before, etc., etcetera.  I feel sure you understand, and I realized it is making me more fatigued than I need to be.  The neat thing is that God answered prayer for me today;  and in the doing of following His path for me, I am finding direction.

One of the things that has been bothering me is having five blogs and two Facebook pages.  For someone that has ME/CFS among other illnesses that sounds plain crazy.  And maybe, I was feeling a little guilty:  it's the perfectionist thing kicking in.  I can't spread myself around that much.


I was wondering how I got myself into this, and I remembered that I was called.

Today, God helped me to see that by answering a prayer for me.  (He tells us in the Bible to bring all our cares and anxieties to Him.)  This afternoon, the answer was in the things I read, and I it was also brought to me by a member on one of my Facebook pages.  I am thankful God cleared up my lack of focus and the distractions with which I've been dealing;  moreover, I am absolutely amazed at how the picture of what I'm supposed to be doing is clearing up.  I feel as if I have been looking through a fogged window, and I now I can see the landscape before me.

I feel relief.  With all that is in me, I am thankful to God.

Secondly, I have been wondering if I should combine blogs, go to Wordpress, get my own domain and combine blogs.  I have that answer for now.  And it goes along with the the acronym, KIS:  keep it simple.

1. It costs money to get your own domain -- can't do that one yet.
2. I am already here, and you know I am here.
3. Blogger is easy to use.
4. Why expend energy on changing something that works.
5. I can share the information for and from Chronic Fatigue and Creative Decluttering here. (Why does this feel like one of those "duh" moments?  After all, having enough energy to clean is something with which people with chronic illnesses struggle.)

I am not going to delete the other blogs, but I am not going to struggle with what to do with them anymore -- at least, not until I am led to do something different, if that ever happens.  This is my plan:

• The two main blogs are Learning to Balance Life Changes and Living Better With An Invisible Illness.  
• Learning to Balance Life Changes will continue to be about information on Fibromyalgia and ME/CFS; dealing with our health, our psychological balance, and our physical issues; and at times I am going to mention how spiritual issues affect our life (because that is who I am).  Also, I plan to incorporate more about the decluttering of our house, our lives, our bodies, as it comes.  Why?  Because these are issues with which many people deal -- not just those with chronic illness.
• Living Better With An Invisible Illness has become a mixture of a devotional blog, a book and blog review, as well as, sharing how art journaling can be a healing tool.
• Deborah Lynne's Inspirations is going to be mostly creative things that I share on Pinterest -- DIY, up-cycling  art, etcetera.  I haven' t had much time to do that lately, because I have been floundering.
• Saying Bye to Clutter is my photo journal for decluttering.  I don't post everyday.  I accumulate pictures, then I post.  This is a fun thing for me, and I am interested to see how I feel after having posted 365 days of clutter gone.  The inspiration to keep doing it is useful too.  
• Take Comfort has been a blog of short devotions, that I began to minister to those that cannot concentrate on long Bible studies and devotionals.  Occasionally, I will do a short Bible Study to add to the collection, but lately, my devotional writing has taken a trip to Living Better With an Invisible Illness.  For right now, I think I am supposed to do it that way.   

For now, that is it.  I will be reworking my links and pages during the next few days.  But right now, I need to give my derriere a rest.  I have been sitting too long.  Also, I have some decluttering to do.  I wonder if I could convince my husband hamburgers are a good idea tonight.  I forgot to defrost something for supper.

I love you all.  If this is too long, I am so sorry.  I have become very conscious about that lately, especially since I have been reading many blogs.  My brain can only seem to take in so much; but also, I don't think our eyes were meant to stare at a computer screen for hours at a time.  See you later.

New Blog Look - Calming

Are you wondering about the new blog look?  Are you thinking it's strange I changed it again -- that I even took off the header I loved?  Let me tell you why.

Last night, I wrote about hypervigilance and the aggravation of too much light and noise coming into the brain of ME/Chronic Fatigue Syndrome patients.  I didn't say that this also happens to people who have Fibromyalgia.  I have been diagnosed with both;  and for the first time ever, it hurt my head to look at those bright colors and polka dots.  It was just too weird.  I love bright colors and quiet blues.  I enjoy the spectrum of colors, but my head felt like it was getting tighter and tighter as I saw the polka dots and the bright orange and pink.  I tried quieting it down, widening the sidebars and page, but nothing worked.

Therefore, I used this watercolor I had painted to give me a quiet background.  I tried some nature photos, but then I decided original would be nice.  The point is that the quietness of the blues were calming to my eyes and brain.  I could not read anything on the orange and focus, but I could with the blue.

Do you notice colors affect you?  Are some colors overstimulating at times?  I would love to hear what you think.

To read more about Hypervigilance in Fibromyalgia and Chronic Fatigue patients, read Adrienne Dellwo's blog. 

Sandpaper on the Brain

Image Courtesy of [Idea go] / FreeDigitalPhotos.net

I felt very off yesterday. 
I was having symptoms of noise sensitivity;  and my husband suggested I get off the computer because of the light.  Usually, I can block a certain amount of sound, but I felt bombarded.  I went out on the porch, and the birds sounded loud to me.  I had to turn off our little fountain, because the water was like sandpaper on my brain.

Hypersensitivity to noise and light is an annoying symptom of Fibromyalgia and ME/CFS.  I haven't quite figured out what triggers my symptoms.  Have you?

These kinds of sensitivities can be found in Post Traumatic Stress Disorder too.  It is also called Hypervigilence Syndrome.  Could it be some of the same changes that occur in the brains of people who struggle with PTSD  also occur in the brains of Fibromyalgia and Chronic Fatigue Syndrome?  For those of us that deal with this, whether it is all the time or when something triggers it, we must find solutions that help these areas of our brain to calm down, because it often seems to affect how our whole body feels.  It is an uncomfortable feeling to feel like your nerves are jittery.  They actually feel as if they are moving inside of your body.  I have heard this described as the heebie jeebies, having the jitters, one's skin is crawling, and one's nerves are on end.  

Sometimes, you can get away from the light source or noise to rest, and that helps.  Sometimes, it just seems more irritating to be still, because your nerves feel like they are moving inside your body.  Visualization exercises can be helpful.  And some people can distract themselves by reading, but only if they can focus.  Some doctors will dispense anti-anxiety medication for the times you cannot find relief.  

Something, that has helped me in the past is taking Omega 3 rich fish oil, which is something I have gotten out of the habit of doing.  I got so busy, I began to tire of getting together my weekly supplements.  Maybe, I should be taking it again.  What works for you?

Positive Weekend

Image and Words by D. Bolton