Too Much Input?

Image Courtesy of [marin] / FreeDigitalPhotos.net

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

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

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

Causes of sensory overload could be:

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

Image Courtesy of [Stuart Miles]
FreeDigitalPhotos.net

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

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

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

Maybe, you are undisciplined?  

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

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

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

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

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

Image Courtesy of [anankkml] 

FreeDigitalPhotos.net

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

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

Thinking of you, 

Deborah

Why Make a Day List During a Flare or Relapse?

Are you having a flare or a relapse?  Many people call any extra ache or pain a flare, whether it lasts two days or two months.  However, I think it is more reliable to think of a flare as a symptoms that have gotten stronger or come back for a shorter amount of time -- probably for a twenty-four hours or less. To me a relapse has the connotation of a return of symptoms that are stronger and last longer than a week.

Do you  ever have a problem with deciding on the appropriate designation for your symptoms?  I wouldn't worry about it.  Either way you feel worse ;  and, there is a negative impact during these times.

You could take time to pamper a little.
Do you need a bath or shower?

However, if you can get past the pain and doldrums, as well as the sickly, icky feelings that come with flares and relapses to take action in your home situation, you might feel better mentally and emotionally.  Knowing you have done at least one thing on your daily schedule,  can help most people improve confidence and  satisfaction during the day.  The problem is getting yourself moving, and being careful not to do too much.  Pacing yourself is an imperative, which means rest.  Don't push yourself too hard or you may end up feeling worse.


Should you work during a flare or a relapse?  That is a question each of you have to answer;  and the answer probably depends on how serious your relapse is.  Have most of your symptoms returned?  Are you fighting off an infection or a virus?  What are the circumstances of your life?  Are you more stressed than usual?  All of these things need to be taken into account. 
 

The List

You have seen a possible weekly cleaning schedule, which can enhance developing a routine while ridding your house of clutter.  However, have you thought much about a daily list that has definite goals written down?  

Brain fog is a debilitating factor of Fibromyalgia and Chronic Fatigue Syndrome.  Some people feel like they have fogginess every day, even on more normal days.  

One way to combat brain fog is a designated list for the day, written on scrap paper or in an inexpensive notebook. 























During my relapses, I would accomplish very little, relying only on my weekly schedule.  I need to see specific tasks written down, so I can cross them off.  When I see a task crossed off my list, it boosts my morale.  I may still feel worse than usual, but I am not as bored, nor do I feel like I've completely lost a day.  

Even if you only accomplish very small tasks, it is a good thing.  Working helps dissipate depression;  moreover, it means you will not have as much to catch up on when you are able to do more.

One hint about your designated list for the day:  even on good days, do not make it too long.  Don't write down more than three things on it.  In fact, if you are having a flare or a relapse, more than three things will probably be too much.  The principle of three works.  If you have more energy after getting three things done, you can always add another thing you want to do.

I hope this helps you on your more difficult days.  I can't guarantee that you will always feel better if you do something; but, after a flare or relapse, it is harder to get moving if all you have done is sit all day.  

During a relapse or flare, I have found that when I am able to do at least one active thing every day, my morale is higher than if I sit all day.

Therefore, try to keep moving on your flare days;  but also, remember to rest when you feel like you are shaky, dizzy, or over-fatigued.    

God bless you all.  Have a good week!

Deborah

Medicine, Supplements, and Remembering to Take Them

Leftover pills that have not been taken.  These pill
containers were filled about two weeks ago.  How
does a person make it any easier than this?
Obviously, there has to be a concentration on
priorities.  The red pills are a cranberry pill
for helping to prevent UTI's.  They were not
needed anymore.  And this does not even give
you an accurate view of the pills that were in
there, which were left from previous weeks.

Confession Time has arrived for me, and I am wondering if anyone else deals with this.  Taking my medicine and supplements has been getting sporadic in my life.  I am pretty good about the medicine, but I get too busy or too tired and I don't keep up very well with my supplements.

Somehow, I have a feeling there are people out there saying, "Oh, it is easy.  Write it down.  Put them in your divided pill containers for the right time of day, etcetera, etcetera."  And I have done both:  I usually end up with lots of leftover vitamins and other supplements that are good for me.

Is anybody out there saying, "No wonder you haven't felt too great lately."?  Well,  I am sure it isn't helping that I have gotten slack on taking everything.

How To Keep Going When Your World Turns Upside Down

Have you ever noticed that children know exactly
what to do when they are worn out?  Our grandson
came into go potty;  and then, he sacked out in the
bed, wet bathing suit and all.  I love this picture.

Do you ever have a week or two that seems to turn your safe little world around?  Your routine is upside down and your body is gasping for energy.  Your brain is working, but it has slowed down to a 20 minute lag.  Everything seems to be painfully slow, and you know you need to take life at an easier pace.

Even now after years of illness, I get these guilty,  nagging, little feelings when I don't do everything I consider to be my work, my calling, my responsibility.  Does this happen to you, and what do you do about it?  Are you backed into an "I have to do it corner", whether it is detrimental to your health or not?  I have been there, and I ended up getting more ill, because I have never liked giving in to my illness.  At least, that is how I saw it.  I had to be stronger than that.  If my body was not going to cooperate, then I would trust in will over matter.  

I am not saying that I stopped praying.  I still trusted in God, but I also thought I had to push through to be well and to please Him.  However, at that point, I chalked most of my problems up to my liver, depression, fibromyalgia, and gaining weight.  I did not realize that my thyroid was compromised and I had multiple things going on in my body that added up to Chronic Fatigue Syndrome.  Actually, now when I look back at the onset of my illness, probably most of my problems were Chronic Fatigue Syndrome, including the depression.  It took total collapse to finally find out what was wrong with me.

Some people think they are weak because they cannot get well or work through these diseases/syndromes.  I would like to suggest most people are stronger than they realize.

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.

Fibro - Fog

When Up Is Down, and Down Is Up

When one has Fibromyalgia and CFS/ME, we sometimes have those days that not only do our brains work slower, we feel out and out foggy.  This afternoon, I am sitting here with my ears ringing about as loudly as the television;  and I am wondering what will happen if I go out to the kitchen to do some work in there.  Will I have to stop, because I only have enough energy to wash one or two bowls?  My inclination is to stay in my recliner covered up with blankets.  It's not that cold today, but I'm cold;  and, it feels cozy where I am right now.  I think that is probably as good as it is going to get today.

Did I mention my fingers are numb and tingly too?

Do you ever have days like this, and do you wonder where they come from?  Do you wonder about symptoms that come and go, or symptoms that are magnified sometimes, but not every day?  For instance, my ears do not usually ring this loudly:  right now, I can only describe the sound as very, very loud crickets or ocean without the break between waves.  When I have no other sound in a room, I sometimes hear a light cricket sound;  however, now, the sound is blaring loudly.  

All these symptoms are also described by other fibromyalgia patients. Sometimes we wonder what makes our symptoms kick in.  Well, today, I have an inkling I know what is making my day slow and weird.  I woke up early this morning,  and I had such bad excess acid, that I could not keep it down.  The pain made me feel like I was going to pass out, and I went into a cold sweat.  I had to lie down just in case.  If I hadn't known that I ate something that could give me excess acid before I went to bed, I would have been more concerned.  You see, I am no stranger to passing out:  I have done it ever since I was 11 or 12 years old.  However, it does give me pause, so I will go to my doctor.  

Ladies, have you ever thought you wouldn't know if you were having a heart attack, because of the fibromyalgia.  I've had stress tests twice, because I got esophageal spasms.  I don't get them very often, but the first one made me think I was having a heart attack. The spasm was so painful, I passed out.    Today, I haven't had an esophageal spasm but my chest wall is one big burning ache.  Right now, my sternum is sore without even touching it, so I have an ice pack on it.  

The reason I am going over all these symptoms is because they are fresh in my mind, not because I want sympathy.  

Dear Ones, I know how frustrating it can be.  Sometimes, weird is the only thing we can think to describe the way we feel. It feels a little bit like being Alice in Wonderland:  you don't know whether up is down, or down is up.  



   I hope you all are having a good day.

created by me for you

Light hugs to you,

Deborah

For more information on Fibromyalgia Symptoms, click here:  The Monster List of Fibromyalgia Symptoms  by Adrienne Dellwo.

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.

Do What You Can Do

Image Courtesy of [graur codrin]/FreeDigitalPhotos.net

Foggy brain go away.  Don't come back another day -- I wish!  But here it is,  you are going to get the "Do what you can do, and don't worry about the rest talk."  That is what I plan to do;  because, if I start stressing over brain fog, it will get worse.

• Earlier today, I started an excellent post by accident as I was commenting on another blog.  I copied it, and redid the blog post comment.  Lesson learned:  immediately copy to stick it note or new template, because I might delete the really good stuff, while I copy a name so I won't forget to spell it properly.  If that post makes sense to me tomorrow and my fog will let me edit without feeling brain dead, it will be in Living Better With An Invisible Illness.
• I can do a load of laundry and put away the basket that has been sitting there a week.
• I can do the FlyLady habit for the month, which is to declutter for 15 minutes every day.
• I can write down a couple of things I need to do, and when I finish I can check them off my list.
• Also, I can continue to get dressed daily, which I had let up on because I have been fighting depression.  This is something I have already accomplished --  Hooray, me!
• What can you do?  Your list doesn't have to be as long as mine.

You and I can do this.  I know we can.  Take Baby Steps back when flare-ups, depression, or brain fog hits -- that is the way to go.  Be grateful for what we can do.  Enjoy doing something that doesn't make the brain fog worse.  You will have to decide what works for you.  I like to read something entertaining or watch a funny movie.  Sometimes, I work on my art journal.  Or I take a short walk with the dog.  Or I take my anti-anxiety medicine, and I go lie down in my quiet bedroom if there is too much coming into the brain and my nerves are on end.  If you have Fibromyalgia, you probably know exactly what I am talking about.  Sometimes, it is a daily battle and sometimes, we seem to have moments of respite.  Never again do I want this disease to flood my life with guilt over the things I cannot do all the time.  How about you?

Holiday Color, Speaking of Hair

Last week, I not only felt sick:  I wanted to look good with the least amount of effort.  I was tired of having wet hair hanging on my neck from going into sweats -- not perspiration, ladies and gentlemen -- but out and out sweats that made my hair feel like I had poured water over it.  So with much trepidation, I asked my husband to drive me to the hair salon to perform the dastardly deed. Yes, I let the stylist cut my hair short.  It took me a week to tell anyone I had it done.  I am blessed to have a husband that tells me to keep things simple.  If I was happy with short hair, so was he.

Please don't think I am telling anyone this is the answer to simple.  We all have our own answers to what hairstyles work best for us according to hair type and face shape.  I had just come to that moment I had to have a different hairstyle.  I felt sick, old, and frumpy;  and I know all I had to do was  fix my hair.  However, wet hair on the neck ruins the hairstyle and makes me cold. Plus, i didn't feel like fixing it.  Maybe, it was one of those woman things:  I needed a change.  And hair does grow, so I could let it grow again if I got tired of it.  I also have to admit to having browsed wigs on the internet.  Cutting my hair was an adjustment:  having another option sounded good too.  

My head felt like it had lost 5 pounds.  Woo hoo!  It felt good.  But was I satisfied with that?  Of course not, so yesterday, I bought a highlighter kit.  I was not paying forty dollars to pull a few pieces of hair through a cap, especially if my husband would help me pull strands through the holes.  I knew I would be stressed if I did it by myself.  So you know who helped me.  True love has got to be your husband of 41 years or any amount of years agreeing to help you color your hair.  This was a first for us and it was actually kind of fun.  Did I mention we are on a tight budget?  He was all for saving thirty-five dollars.

Now, for the warning:  read your directions first.  If you haven't colored your hair for a long time and you are having brain fog, let your husband read the directions too.  Or check off each item as you do it in addition to reading the directions first.  Why am I telling you this?  I read the directions through, mixed the Frosting Developer and the Lightening Powder in the little tub.  Then, we put it on my hair and left it.   After the time was up, my husband helped me rinse and shampoo in the kitchen sink.  Then I put the conditioner on and it felt strange.  My brain went into oh-oh mode, I put my glasses on, and I realized i was supposed to mix the "conditioner", which was Protective cream in with the developer and powder.  We both mildly panicked and my DH said nervously, "We better get that stuff out of your hair fast."  So we shampooed again.

The stories we all have about Brain Fog could probably fill volumes.  My hair looks fine  (whew!), I like the highlights, and I feel one step closer to making the holidays easier.  Also, I made it to our Worship Services this morning, without feeling stressed, hurried, and nervous.  An hour ago, I emptied out another moving box:  it felt like early Christmas.  Life is Good, even with brain fog.

The Dichotomy of Fibromyalgia and Dreams

Saturday, November 10, 2012

While I want to encourage all my readers that have Fibromyalgia and Chronic Fatigue Immune Dysfunction, I have to be totally honest too.  That is one thing that I feel is important, so we can be realistic about what we can and can't do.  I don't want to be a bubble buster or a dream stealer;   but I know how it feels to have false expectations, and then fall flat on my rumpus.  If you see some unusual spelling or grammatical errors today, part of it is due to my fibro-fog or brain fog. My Brain Fog is really bad today.  I am having trouble reading and comprehending.  I can write, but there has always seemed to be a connection between my fingers and brain.

I have had my share of ups and downs the last few months, but it seems to be part of my landscape -- having to live within the parameters of feeling Kinda OK or Tired Of Being Tired.  Since I won't ever feel Really Well again, unless someone comes up with a miracle cure, it would be nice to feel KO (kinda ok).   However today, I just had it with feeling TOBT (tired of being tired).  I am tired of being achy, burny, hurty. I am tired of sinusitis and having a urinary tract infection.  And I am tired of me.  Ugh!  Ever felt that way?  So at least you know I am a real person, and I have my fragile times.  I suppose this is one of them, and I know it has been building, because I want to be able to push past my tiredness.  However, that does not work for people who have FM and CFIDS.

Sunday Nov. 11, 2012
For those of you that have been following my FlyLady 31 Days of Beginning Babysteps, I can honestly say that I have made progress because of doing the baby steps;  however I have not been able to do every step every day.  Between flares and illness, I feel like I have done the best I can.  Somedays, I have been able to do all the steps and other days, just a few.  I am seriously thinking about exploring other ways to be successful in continuing the steps--perhaps modifying or coming up with my own schedule.  I  may not be able to have complete control over how my body is going to react and be everyday, but I am convinced I can find a way to improve on how I manage housekeeping.  I also realize one of the main ingredients is getting rid of clutter.  FlyLady is right about "clutter attracting clutter."

I guess you noticed the dates.  Yesterday was tough, but I survived.  My night was restless:  I could not get comfortable, and I am staying away from pain meds, because of the warnings on my antibiotic.  The brain fog is better and the shaky feeling I had last night is gone.  My blood sugar went up to 194 last night.  My body notices those kinds of changes right away.  Today, I started my day out right, with the mindset I am going to pay better attention to my moderate low carb way of eating.  However, I am still trying to make up my mind about splenda.  Splenda was helping me to follow this way of eating, because I could still have my homemade chocolate balls.

God bless you all.  Have a wonderful new week.

Love,

Deborah  

  

My New Pet Peeve

I don't usually muse on my pet peeves.  In fact, I usually get over them;  but today, my Fibro-brain had more than it could take.  I found a blog I really liked, and it shed light on an illness I don't know about, as well as being very interesting on different things we encounter in life.  I decided to comment and I never could get the darn thing for commenting to work right for me.  Was it the too many words I put in and took out, or was it the thing that wants you to prove you are not a robot ?  After six tries of trying to comment, I still don't know.  Maybe, it had an anti-Deb device in it.  "De-bor-ah here, don't let her in, Warning, Warning. (read this in a robotic monotone.)"  

After I took a deep breath, I decided to do a little more research, because I was looking for a blog on a certain subject that I am thinking about adding to my blogging vista.  I won't say which one, because I don't want to give it away.  I wanted to see if anyone has spent much time writing about this subject.  And when I browse,  I usually get pulled in -- that's the danger of browsing, being in a library, or going through old papers:  I just have to start reading.  So, I went to another blog, and I enjoyed reading it.  So, I looked for a like button or the equivalent.  I found one, and I might have known:  I had to sign in or join the platform host.  It just irritated me.  Why did I have to join?  All I wanted to do was say, "I liked your blog post."

Please spare me all the reasons for this.  I know it keeps the robots out, but I am discovering that it is pretty easy to spot the robots; and blogger is doing a great job of spam detection.  Thank you all you smart blogger  platform people for making Blogger easy to use.  I don't even have much trouble with your robot detectors:  it doesn't usually take more than one or two tries for me to post a comment.  

Lost Days (Cognitive Dysfunction)

Image Courtsey of [Evgeni Dinev] / FreeDigitalPhotos.net 

Do you ever feel like you have lost days, because it seems like a week has gone by, but it has only been two or three days?  When the realization comes that you have to look for documentation of where you have been  when, and what you have done, it almost feels like waking up from a dream.  Maybe, that is one of the reasons I like writing things down. Even if it is just a list, I can see what I have done, whether I went into much description or not.  However, I don't always have intense brain fog.  I have found that energy levels, pain, and stress all affect my cognitive abilities from being very good to being dysfunctional.  Today, I first noticed it in this sense of having lost days.  I was trying to remember what day I was on for Flylady's 31 Beginner Babysteps.  I slacked off reading them for a couple of days, although I was still doing the routines.

Cognitive dysfunction is a problem for people with Fibromyalgia and Chronic Fatigue Syndrome.  I think forgetfulness must run the gamut from mild to intense.  After having read many accounts of forgetfulness and having dealt with my own, I know that it seems to partially involve short-term memory problems.  It affects life daily from forgetting words to forgetting how to get home.  Many people who were formally very sociable become less so, because they cannot hold a conversation without forgetting what they are going to say, while waiting their turn to speak.  Sometimes, I see faces of people I know, and I have a hard time putting  names with their faces;   or I feel like I probably know them, but I am not quite sure.

Image Courtesy of [dan] / FreeDigitalPhotos.net

For those of us who start feeling confused at the store, because of the lights, the people, and having to make decisions about what to buy;  it can be very disconcerting and impair memory, even if we felt fine earlier in the day.  For some people this leads to panic attacks.  When this happens to me, I may actually have the panic attack after I get home.  I may have a physical reaction and feel like I am trembling all over.  My hands might actually be shaking.  Moreover, my head may feel cloudy:  I feel like I am slightly off and it is harder to focus.

It would be wonderful if you would respond to this, and give some feedback on how cognitive dysfunction affects you.  It helps to know you are not alone;  and for so many intelligent people to have the same symptoms could not be coincidental.  For more information on cognitive dysfunction, you may find  the following link helpful:  Cognitive Dysfunction Finding in Fibromyalgia by Adrienne Dellwo.

P. S.  I would like to finish my Flylady 31 Beginner Babysteps by Wednesday.  It has taken me longer than 31 days.  If I had done it without skipping any days, I would have been done by October 29;  however, I knew I would probably have to skip some days, because of my flare-up.  The point is I am determined to pick up and jump in.  I even find myself doing some up the steps on the Routines automatically now.  However, I have to rest often, especially lately.  So I would say the experiment has worked, because I am improving my habits.  The thing is, I know I am not done.  I will have to continue the job.  My house was an absolute mess before I started, and I still have boxes and items to put away, throw away, or give away before I am at the point of having "My Own Home - Bed and Breakfast."  I figure, although slow, it is definitely worth it.

Elusive, Desired -- Sleep!

This is rest.  We thought he had come inside to use the
bathroom, but my grandson had climbed into the bed --
wet bathing suit and all and fallen asleep.

Sleep

is elusive

is manna to a sleep-starved brain

is desired

is needed

and 

it finally comes in the form of a pill or herbs

that leave me fogged

in the afternoon

because I slept through

the light of morning.

        ~Deborah Bolton~

After I wobbled out of bed, using my cane for stability, I made my way to my recliner, and I thought that Flylady must be a springer, meaning she must be awake and ready to go in the morning.  Now, I don't know this to be true.  At 1:15 p.m.  I only knew there was no way I could make my bed right after I got up, because I would have fallen over -- back into the bed or onto the floor.

Disordered sleep is one of the symptoms of FM and CFIDS that I abhor.  How can a body that is desperate for rest, that has had 2 hours sleep in 38 hours resist going to sleep?  It seems like a cruel joke in the life of those of us who have this symptom of FM and CFS.  

Yet, I have experienced the difficulty of falling asleep more times than I can count.  I have experienced it when I 

• ached all over and the exhaustion felt overpowering.
• was excited that I was going to travel the next day.
• was anticipating my doctor's appointment the next morning.
• had worked too hard preparing the house for a party or visitors.
• had been to a party or dinner with several people or many people.
• had been shopping for several hours.
• had sung in a concert or musical at my church

It's a conundrum I haven't solved, but I suspect it has something to do with the flight and fight syndrome.  Once I get that that adrenaline rush, whether it is called for or not, my body has a hard time relaxing enough to sleep. 

Therefore, I have learned to go with the flow, at least most of the time.  And my husband tries to understand how hard it is for me, even though he is almost asleep before his head hits the pillow.  It makes a normal daily schedule illusive, and it does not work well with the morning schedules of most institutions.  

This problem with sleep has become more pronounced as I age, and I am thankful I was able to function on less sleep when my children were young.  Now, I do not function well unless I get my full eight to ten hours of sleep.  Maybe, my body is trying to make up for what it lost -- ha!  I know it 

can't, because even when I am at am at my best, it is less than the norm.

I know there are many young woman with fibromyalgia and/or CFS/ME.  Sometimes, I wonder how you make it through your busy days;  and then, I remember how hard I worked when my children were at home.  I worked and I played with the enthusiasm of a wife in love, and a mother that wanted the best for my children.  I knew the best was having a mother that spent time with them and made the love in her heart show through her actions.  I would not have had it any other way.  I am so thankful that even though the aches and pains were there, I was able to be active.

Sometimes, I feel like my body has grown old before its time;  yet, my mind feels like it is in my twenties, only wiser.  I would love to do the things I used to, but it doesn't take long for me to know I would be miserable if I continued.  This morning I dreamed I was invited to ride in a boat on a lake and I could have water skiied as well.  But, even in my dreams, I had to say no, because I knew I would be out of action for a long time afterwards.  Yet, in reality, I remember when I didn't ever get sore from water skiing, even if I hadn't done it for a long time.  However, about 25 years ago, I discovered the agony of skiing with aches and pains that lasted for days.

I suppose I better get myself amovin'.  I have been trying to feel fully alert without heavy eyes for about 2 1/2 hours.  At least the wobbles are gone.  While I was sitting here, I had a movie on called Funny Valentines  (link below).  The last line in the movie is one I have to share with you today:  There is nothing more precious than giving a person a piece or your heart.

From me to you, each time I share, I give you a piece of my heart.  Don't worry:  there is plenty there, for it is filled with the love of the Lord Jesus Christ and His Holy Spirit.  He gives me an unending supply of love, for which I am grateful.

I looked for the DVD or video of this movie, and I could not find one.  On IMBD, someone had asked about that, and the answer was that this movie was made for television, so there is no DVD.  Boohoo.  However, I found the book and I have fallen in love with a writer I didn't know about.  Her name is J. California Cooper  and she wrote Homemade Love, which is a collection of short stories.  And I found Funny Valentines.

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.

Leave Well Enough Alone

Do you see what happens when I get over-tired?
Sometimes, I write bad poetry.  When you
over-do, does it affect your attitude?

“Leave well enough alone.”  That ‘s a phrase with which I have some difficulty.  I just don’t know when to leave things alone.  I don’t know when to stop changing them  and  perfecting them.  That’s why, today, I mucked about changing the templates  on my blog;  then, I changed it back to the original.   I suppose I could count it as a learning experience , because I changed templates, fonts, and I learned how to tile my own pictures as a background;  however, I ended up getting overtired and frustrated.  And, I wasn’t sure anyone would like the tiled picture of an orange butterfly on a zinnia over, and over, and over again.  And DH said the other was easier to read.  I agreed. 

The Fibromyalgia and the CFS/ME have kicked in again, and I have so much more to do.  I’m expecting company.  I should have been spending more time cleaning house.  But no, I had to play with my blog, because I’m obsessed – Nah, well maybe, a little obsessive.  Because I am a perfectionist—Ahh—now, I’m, getting somewhere.  Of course, I ended up with a huge case of brain fog.  

 It’s crazy.  I can write;  however, at this moment,  I cannot focus enough to read anything lengthy or even slightly technical.   Therefore, I am afraid this blog post may sound like the demented ramblings of  a muddled mad-woman.  I’m actually writing this blog post with  the inside of my head feeling as if it might burst.  I don’t really have a headache:  it feels more like a brain ache.  Either my brain is bursting, or there is a band tightening around it.

The sensible thing would be to go to bed right now;  but tonight, I will probably lie there waiting for the sandman to do his job:  and those random thoughts about all I did today and what I need to do tomorrow will intrude.  It never ceases to amaze me how my totally fatigued body fights sleep.  IT’S NOT RIGHT, but it is what it is.