Feeling Misty

Hello Everyone!  I'm checking in to let you all know I am thinking about you and praying for you.  It's afternoon here and my schedule is more messed up than usual.  This flare in symptoms has managed to help turn my sleeping schedule upside down.  I do not force myself to stay awake in the middle of a flare.  Since I need rest to heal as much as I can and to regain depleted energy, it would seem counter-productive to force staying awake, just to follow the normal world's schedule. 

Image Courtesy of [Nick Coombs]/FreeDigitalPhotos.net
This beautiful fall photograph fits in with how I feel right now -- feeling
a bit misty or foggy, and definitely off any normal schedule.  But, that is the way it is when one is experiencing a flare with Chronic Fatigue Syndrome.  It feels like a light case of influenza, body aches and all.
The old head is too foggy right now to write about it,
but I'm sure I have written about it before.
Now, I need to get something to eat.
God bless you.

Tips for Jumping Back in After a Flare Or Relapse -- Day 3

The best-laid schemes o' mice an' men       The best laid schemes of mice and men

Gang aft agley...                                          Go often awry...                                   

Original                                                       Translation

The above lines were written by Robert Burns  in 1785, and included in the Kilmamock volume.

So what happens when you have only slept for six and a half hours? Does your fatigued body pop up out of the bed, and you jump right into the days activities? I  can tell you that it isn't what I do, because I am more frequently a creeper than a springer. 

Today was my second day of getting back into a routine;  however, last night, was a sleepless one for me.  I didn't fall asleep until 6 a.m., and that was after I took an herbal remedy.  Needless to say, my priorities changed today;  however, I was still able to accomplish a few things.  My main words for the day were keep activities light.  When I have a sleepless night, I am not going to force myself to do to much, so I can continue my recovery, rather than relapsing.  

From Yesterday's Blog Post - Second Day

1. Get dressed.  I am not saying you cannot clean in your pajamas, because I have been known to do that;  however, I like having on a comfortable house dress (something pretty) or comfortable jeans or skirt.  Being dressed helps you to feel ready for the day.  
2.  After dressing, rest for a few minutes.  Put your feet up.  Perhaps, you will want to make a short list of things that need to be done.  Then pick three things off that list.  Work at them no longer than 15 minutes each.  You may need to cut the time for each activity to a shorter amount, depending on your strength.  The key to getting back  into your routine is adding things gradually.    
3. Make sure you rest between each activity.  Put your feet up.  I often work or play while sitting:   ie.  reading, working on a blog post ( which can be very tiring and time consuming), eating a snack, watching TV, or simply closing your eyes for a few minutes). 
4. You have to learn to listen to your body.  That is not always easy for those of us who like to push through and finish an activity.  However, I have learned that if I take a break and go back to what I was doing, I am more likely to have the energy to do what I  need to do tomorrow. 

Day 3 - Remember you can do anything in baby steps.

1. Get dressed. Rest.  Eat breakfast and take your medicine.  (However, I admit to eating breakfast before dressing.)  It's your routine:  don't try to change everything to match someone else's ideas of how you should manage your schedule.  That can be overwhelming.  
2. List 3 chores or activities you need to accomplish for the day.
3. Work on one activity at a time for 7 to 15 minutes.  It is acceptable to spend less time on a job if necessary.  You may have to break one chore into 3 parts.  As I said before:  it depends on your strength and stamina.  We are all at different places in our lives and our illnesses.  
4. After you have worked for 15 minutes, you need to switch to a different activity.  I have been known to push on, but I usually end up feeling more drained than I should have.  Just a word about the reason for switching activities.  It helps one to stay focused on the job.  Often, I rest after the 15 minutes or do a sitting down type activity, like checking my email, checking Facebook, or writing on my blog.  Sometimes, I read.  
5. Stay hydrated.  I usually keep a glass of water nearby.  Before I sit down to rest, I usually check to make sure there is water in my glass.  Filtered water is my choice of drink, but sometimes I spice it up with lime, cucumber, and ice.

These are basic schedules.  I have not been giving you detailed lists of things to do for a couple of weeks.  I would like to work on my own "routine", and I will pass on new things that I learn.  Even though I can come up with great detailed lists of things to do and when to do them, I have found that usually does not work for me on a regular basis.  I would like to encourage habits of the month to work on;   however, I may not always come up with the habit that most important for you to improve.  

That is when you might want to be creative and choose to list your habit of the month to do daily, not mine.  I am telling you this, because I do not want you to be frustrated by trying to do things you are not strong enough to do.  If you are familiar with various ideas of how to clean and get rid of your clutter, you may have noticed that some people find a fulcrum point to focus your habits and build better ones.  This is an excellent idea, but I found my starting point needs to be the habit of "Getting Dressed."  This is what works for me.  You may find you need to start by making your bed or having 15 minutes of meditation or a devotional.  FlyLady suggests starting by "shining your sink" 

in her 31 Beginner BabySteps.  She also has a page called Getting Started.  

I adapted FlyLady's system to my needs.  I also like to read articles about how other people accomplish tasks they need to get done.  As far as I know, there is no perfect way to get the job done.  That is why I like to emphasize taking baby steps.

You and I can baby step our way through the things we need to do or want to do.  Small steps or little bites add up.  They really do.

Getting Up Again

My illness has left me depleted and frustrated many times; and as the clutter begins to take over again, I wonder what my solution will be.  You see, I am not ready to give in and give up.  Are you?  Do you want to be stuck in a messy house that preys on your mind and spirit?  I know I don't.  I don't want to feel trapped by my clutter.

Therefore, I am coming up with a public experiment;  and, I would like you to join me if you have a chronic illness that impedes you in the action of keeping house or of leaving the house.   A couple of days ago, I felt sad, because I am so very tired of a messy house and a messy me.  At least, I feel messy.  I have not been able to keep up the FlyLady system.  Her system is wonderful, if you are well enough to clean.

The past month and a half, I have not been well, but I have been  able to make myself throw in a load of laundry or clean the toilet.  I have cooked a few meals;  but most of the time, I have sat in my recliner or I have been lying down in the bed.  I have not gone anywhere, because I have not had the energy.  I didn't even go to see the doctor.  Have you ever considered how crazy it is a sick person has to sit in a waiting room -- a person that needs to be in bed.  I still remember when the doctor came to our house -- when I was a child.

I have been praying, asking for help in this area;  and, I have started a Facebook Page dedicated to creative decluttering.  When you're sick, you have to be creative on those days you feel like you cannot possibly get started.  I will not be writing about decluttering here, because I felt I needed to share it with all who are clutter impaired,.  My first blog post on this subject is Deborah Lynne's Inspirations, Decluttering Encouragement.  The second one is Conquering the Clutter Monster.

My regular readers know that I struggle just like they do.  Perhaps, some readers have things more together than I do.  However, I know I am here to encourage you, we can get up again after we fall down.  Sometimes, we think we are ready to give up:  it seems our hope has left us.  We reach out to God with heartfelt prayers, and He gives us strength to go on -- something clicks.  My prayer is that something helps you to get up and keep on going will click, that your joy , peace, and will to go on will be a palpable thing to you.  If you have fallen, I pray you will be able to get up again, taking baby steps to a life that feels less topsy-turvy and more balanced.

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.

Courage to Leave the Room

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

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

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

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

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

Image Courtesy of [Sattva] / FreeDigitalPhotos.net

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

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

Image Courtesy of [Maggie Smith] / FreeDigitalPhots.net

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

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

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

Handling the Truth about My Illness

Yesterday, I tried to write and all I could do was feel stuck in fog.  I even went to look up some information on what it feels like to have Chronic Fatigue Syndrome, as if I didn't know.  I'll share a link with you at the end of this blog post, but first I want to write while my brain feels clear.

"Autumn Colors"[by dan] / FreeDigitalPhotos.net

How do I let you know I am being positive, even when I write about the realities of this disease?  I know that it is not officially a disease, because the researchers have not pinpointed the cause of the syndrome:  but, those of us who have it know it feels like a disease. And just because someone doesn't know what causes it, does not mean it isn't a disease.   That sounds sad, but it isn't depressing to me like it used to be.  The depression many have with Fibromyalgia and Chronic Fatigue Syndrome used to be unbearable.  For months on end, I think I did little but exist;  but, that has changed.  

However, that does not mean that I don't have to deal with the moodiness or feeling that I am coming down with something.  It does not mean I don't get tired of CFS and FM, or that for a while I might hope I will never feel this way again.  I know what is causing the mild depression; I try to do what I can every day; and  I know I did not ask to be this way.  Whether other people understand or not is something I cannot help.  Sometimes, I don't even understand.  I went to therapy before I knew I had Chronic Fatigue Syndrome, and that helped me with worrying about what other people thought.  I knew I had Fibromyalgia, NASH, and prediabetes.  What I didn't know was I had Chronic Fatigue Syndrome too, until about a year later.  I also have a strange skin condition called Erythema Annulare Centrifugum, which I have had since my late twenties.  I have had it for over 30 years and it varies in the places it appears, and in severity.  I had it all summer, and it was bearable.  Right now, I have one area that is quite deep -- and it burns, hurts, and itches.  But guess what!  I am not depressed like I used to be, because I know  that I deal with something I did not cause.  I know all this fits together somehow.  Furthermore, I know that God knows my heart, even when I doubt myself.  He knows me better than I do.  When I read Psalm 139, I am completely assured that God knows everything about me;  and my heart is calmed.  

Finally, I suppose some of you might wonder what this has to do with FlyLady's 31 Beginner Babysteps.  It is a matter of facing reality.  This summer I began to feel better and I was able to do more, including light exercise.  Some days, I felt as if I was getting better and would probably be able to maintain at a certain level.  Unfortunately, I could not do that.  As I added things into my life, I was sapped of more energy, and I did not recover well.  Then, I began to feel guilty and angry (usually at myself), that I could not live a normal life.  The fact is I have a new normal, or perhaps a better way to say this is I have a different normal.  And I know this is true for many of my readers.

Therefore, I will be mentioning FlyLady's 31 Beginner Babysteps in passing.  I am still going to work on my habits,  but at a pace I can maintain.  I cannot and will not please everyone.  It is impossible.  But I can pray, ask for guidance, and be happy in my circumstances.  If I try to do more than my body can handle to please other people, than I am not being honest.  I know there are times I put out more, because I am shooting for normal, whatever that is.  However, my body shuts down;  and it has done that to me for the last 20 years.  About three years ago, I  became so ill I felt like I had the flu all the time and I did not recover for even a few weeks.  I was desperate to find  a way to get well.  I knew it was not just FM and liver disease.  The point is:  I'm the one that has to live with it, as does my husband to a degree.  What anyone else thinks about me is irrelevant:  I cannot help it if people, who do not share my circumstances, do not understand.

Whatever chronic / invisible illness you have -- you are the one, who knows how it makes you feel physically, mentally, emotionally, and spiritually.  Nobody else can determine that for you;  however, there are counselors that can help.  And if you know God, He will help you too, whether that means complete healing or coming to terms with living on this earth with a disability.  

That is enough for today -- somehow, I don't feel like this is a finished subject.  I'm going to get a snack, put some laundry in the dryer, and rest.  Maybe, I will look at FlyLady's 31 Beginner Babysteps for encouragement.   However, I want you to remember that doing the Babysteps is an experiment for me.  I am not going to feel guilty when I cannot do them, nor do I want you to feel guilty.  Resting is doing something.

The following link is an informative one on post-exertional malaise and how it feels:  Unraveling Post-exertional Malaise by Jennifer M. Spotila, J.D.

No Guilt Flare-up

Feeling the Pressure
D. Bolton

Have you ever read a book, watched TV, surfed the internet, or just sat feeling horrible;  instead, of reading your Bible, praying or listening to Christian music?  Have you ever wondered if God would show you a verse to make you stop feeling guilty for being sick?  Well, I have and I know better;  but sometimes, I think I will never stop having relapses and then I worry about those people who don't understand, even though, I know the scriptures that tell me not to worry.  

You and I cannot do a thing about what other people think.  We really don't know what they think if they do not tell us.  And to make a guess about what they are thinking is pure supposition.  Here are some of the things I am physically experiencing now:  trouble falling asleep, trouble staying asleep, and awful dreams.  And of course, I am having pain and balance problems.  Right now, my tinnitus seems more pronounced, and I am exhausted.  My body felt like it had nervous system buzz going though it all day.  Right now, I am finding it a difficult to type, but as a last resort, I took some medicine to help me relax.  Feeling my nerves throughout my body is so uncomfortable:   I  would categorize it as painful.  And of course, I am feeling the fibromyalgia pain, as well as experiencing debilitating fatigue.  

Therefore, I have lost another day towards completing my 31 day challenge.  But that is not going to ruin the work towards reaching my goal.  When I am able I will continue FlyLady's 31 Beginner Babysteps.  

That is what pacing yourself is about.  You have to be gentle with yourself, and listen to your body.  Sometimes, your body will shout to you to rest all day.  Other times, you will be able to pace activities throughout the day.  Rest is not failure.  Rest is necessary.  Be gentle and let yourself heal as best you can.

Pay Attention to the Stop Sign

There are two sections to this blog post:   1)  Update on my flare-up and how I'm managing it so far;  2) FlyLady Day 2.  

My idea to keep on moving, but less than I was before the flare-up, seems to be working.  I still need more sleep than usual:  I actually fell asleep in my recliner this morning after getting up.  I had not even eaten breakfast.  So I missed church, which I don't like;  but I guess I made my choice when I went out with my Sunday School class last night.  However, in general, this flare seems to be improving, or maybe, I am just managing it better.  I have cooking supper now -- an easy one, but not a microwave meal.  Also, I am focusing on important things on which I was getting lax.  I have organized my medications and supplements into their weekly container, because I am not good about taking everything if I don't stay organized.  I have never liked taking meds, but I feel better if I take care of myself.

I did Day 2, which was getting dressed to the shoes.  I even used lace-up shoes;  and I chose old-fashioned sneakers, so I didn't have to take them off every time I sat in my recliner.  The shoes with the big soles are not comfortable for me when I'm reclining, so I usually wear something I can slip on and off.  I will shine my sink before I go to bed, preferably after the kitchen is cleaned.
And I have 2 post it notes to remind myself.

A car can only go in one direction from here.
Hmm...kind of like my brain.

Now, for the thing I didn't like.  I skipped ahead to check out Day 3.  And I decided to link to the suggested site. I could not seem to reset my password;  and then, I remembered why I quit using it.  It was just one more thing to read or to comment on.  Give me a break -- stop sign time.  When I get overload, I start getting befuddled.  If I don't say no to myself, I get brain fog;  so, I will look at the daily hints, etc.  on Facebook or Flylady.net, or read my email, but that is it.  By the way, about the email.  If I have several FlyLady emails I have never gotten to, I delete them.  I do that with other batch commercial emails too, unless I am interested and have time to read them.  It's not worth it to let email sap my energy.

P. S.  A positive note about Flylady emails is the testimonials and notes from the Flylady staff.  I have been inspired by reading these, but I do not do it all the time.  You have to decide what is comfortable for you, if you go down this path.

Honesty!

"Autumn Colors"[by dan] / FreeDigitalPhotos.net

I really thought I was going to get caught with "blank page" syndrome today.  Then, I prayed and asked God to help me know what to write about.  Writing about changing our habits just didn't seem to fit today, even though, I know it is helpful.  I will come back to that:  in fact, I am considering writing an online diary of my adventures in FlyLadydom.  Today, I may touch on some sensitive issues.  Usually, my message is very positive, because I want you to know there is life after diagnosis; and,  I want you to be able to do the things to get there.  Instead, I am going to let you know that I feel crappy!  For those of you that know me, you know I  avoid any term that could be considered vulgar.  However, I cannot think of a better term right now.  In fact, even though I know I could do the looking up a synonym thing, I do not want to use another term.  This icky, yucky, about to fall off a cliff feeling is here, and ...