After Eight plus Two

Getting cuddled and "doctored" at the same time.

Last night, after all 8 + 2 of my daughter's and son-in-law's large family left, I decided to play a computer game.  Only, I fell asleep in the middle of it.  At 9 p.m., I went to bed and did not wake up until 10:30 or 11 a.m.  I slept over 12 hours last night.  Amazing!

If you feel shaky in the morning after a busy weekend of holding children and babies, as well as all the commotion you are not used to, don't be surprised.  Even with all the wonderful help my daughter and son-in-law gave in taking over the kitchen on Saturday, I had plenty of other input.

I am so proud of my grandson, who has autism.  He wanted to make pancakes, so he and his grandfather made breakfast on Saturday.  He is 14,  and it brings tears of pride thinking of them standing side by side,  Grandpa doing the bacon and Grandson doing the pancakes.  Grandson  is almost as tall as Grandpa and very thin like Grandpa was when he was young.  Their body build is so similar.  I never knew that would make me feel so sappy.

I am so happy, because I managed to balance just fine for the weekend.  I took a long nap, while they went on an outing, which I would have loved to have joined on Saturday.  They told me all about it, and I think that was almost as fun for them.  Also, I had listened to all my friends and readers, who told me to clean after they came.  I did some organizing, and I listened about the cleaning.  Since I have been keeping the house clean, it looked fine.  And now, I really need to clean.

Oh dear, I woke up with numb fingers this morning, so my typing is over.  I just wanted you to know how wonderful this weekend was, that I was able to enjoy and not feel overwhelmed.

Love, Deborah

Baby Steps, Celebrations, and Victories

Image courtesy
of [Stuart Miles]/
FreeDigitalPhotos.net

Introduction

Early this morning, as I finally get up after a night of sleeping and dozing, I am thankful there are some things in life that can be changed or improved.  Like this piece I published yesterday, I am unfinished.  I thought I had myself together, but I discovered I am actually a rough draft, a work in progress.  Just as I am being changed, I have edited this post. 

 The title never quite set true with me.  It felt awkward and uncomfortable.  The original title was Warnings, Celebrations, and Victories.  Perhaps, I was warning myself:  slow down, be careful, you are overdoing.  I knew that I had to rest yesterday.  My activities were quiet, things I could do with my hands with my feet up.  I think the most I did on my feet was fix two simple meals and clean up the kitchen.

Here is the cleaned up version of Warnings, Celebrations, and Victories.  In this cyber world of instant publishing, it is easy to publish something too soon before it is ready.  One can change titles and do updates.  However, the change of title doesn't show, unless you copy the old piece, paste, and republish.  Here is my cleaned up version, with a couple of changed paragraphs, deletes, and an added cookie recipe.  Also, I have a new title, which fits:  Baby Steps, Celebrations, and Victories.

This is the time of year that can drain our physical resources because of traditions we are not willing to let go.  When one has a chronic illness, there are Christmases one has to lighten up on the traditions.  And this varies from year to year.  We may have willing minds, but our bodies don't always cooperate with what we want to do, so we push ourselves to a point we have reached all physical limitations by January and often fall into an exhausted state of relapse.

Image Courtesy of [Artur84]

The important thing to remember is your reason for celebrating.  If you cannot cook all the traditional dishes or elaborately decorate your house, you can still remember the Christ Child's birth.  Or, if you are Jewish, you can remember why you celebrate Hanukkah.  Whatever tradition you celebrate, you can choose to keep the important elements of your tradition, but lighten up on some of the frills.  

One of the things I want to do this year is spend time in meditation and prayer -- quiet time, which can be refreshing to the body and soul.  Spending time with our creator and Lord is important.  It makes the celebration dearer.  

Hopefully you will be able to spend time with family and friends, but rest is an imperative.  You no longer have to be the host or the hostess  with the mostest.   Feel free to let others help you or be the preparers of the feasts.  By the way, deli trays are good too when preparation is too much.  After all, what is more important -- spending time with family or eating the traditional feast?

Please don't feel like I am admonishing you.  I have pushed myself until I was in a relapse by January more times than I want to admit, so I know how hard it is to not be influenced by what we think we have to do.  I am merely encouraging you to think about how you can have a fulfilling holiday without pushing yourself into a corner.

Here's a quick list of ideas:

1. Put up a smaller tree.
2. Don't use every decoration you own, just the ones you like the best.
3. Use bags for presents, or wrap one or two presents a day.
4. Figure out which edible treat you cannot live without and make it. Or, maybe you can buy it ready made.
5. If you have a party at your home, it could be "bring your favorite party food or snack."  I can practically guarantee  everyone will enjoy themselves.
6. Maybe you think paper plates are gauche or a waste of perfectly good  trees, but they don't have to be washed.  Your energy is precious too.

The important thing is to baby step your way through the holidays!  

Victory Report

I would love for you to share your holiday victories with us.  Large or small, they all add up.

I already have a few, which I believe are a result of what I have been working on in small steps for the last two years. Here they are.

We have had a light out in one of our rooms for two weeks.  My husband put in a new switch.  We had a knowledgeable friend that came over and tested circuits.  Today, we had a trained electrician over and he fixed it.  The thing that impressed me was for the first time in a long time, I felt ready when I had to have a repairman come into the house.  The only thing that looked messy were the counters in the kitchen;  and, I had those wiped off before he got to our door.  It felt good to not have to repress embarrassment:  instead, I felt calm and did not frazzle myself with quick pick ups.

A few days ago, I almost had a crisis about our Christmas tree, which my husband was eager to have up this year.  I started melting down, because I felt like I was right back in the middle of clutter again.  I didn't want to ask my husband to move the furniture, so I had the tree in possibly the most unbalanced position I have ever seen for one.  In fact, it looked plain old ugly where it was placed.  

However, when I explained to my husband how the tree and the boxes of decorations were overwhelming me, he wanted to help.  He even offered to put the tree back up in the attic.  But, I finally remembered how we had the furniture last year:  note to self -- draw a picture and put with my Christmas information for future use.  He moved the furniture and it made all the difference in how I felt about that tree.  As for the decoration boxes, he started putting the emptied boxes up in the attic in the evening to get them out of the spare bedroom.  The spare bedroom was my other source of frustration, because I felt like the progress I had been making by getting out the things I was saving for the cancelled garage sale had been destroyed.    

The good news is there is progress at my house.  It was not instant, but I am reaping the fruits of my labors.  This is how I know baby steps work.  I am experiencing it.

From feeling comfortable about short notice someone is coming to my house, to having one mantel decorated, to having the tree up, to having the Manger Scene arranged, and having three wreaths up, all before the second week of December, I am experiencing success.  After my husband and I readjusted how the job was going to be done, I could breathe easier.  Moreover, it was a boon not having to clean the living room before we decorated the tree.  

I know it is going to take perseverance and many more baby steps to continue what I have started.  I hope you know that too.  May we continue to encourage one another, changing methods when what we are using doesn't work anymore.  Thinking out of our normal boxes can revitalize and make our lives better.  

Finally, if you haven't joined my Facebook Page, Chronic Fatigue and Creative Decluttering, the exchange of ideas and methods for managing our clutter and cleaning has been helpful.  Also, look for the cookie recipe  below the picture.  I think I have had this "secret" recipe for forty years.  It is one of the frills I don't want to give up this year, so I plan to make it.  And, I can sit down to decorate the cookies.

Image courtesy of [africa]/FreeDigitalPhotos.net

Nana's Sugar Cookies (possibly the best sugar cookie recipe I have ever tasted)

Image courtesy of [apolonia]/
FreeDigitalPhotos.net

Cream together  1/2 cup of butter
                          1 cup of sugar

Blend in              1 large egg

Sift together and add to mixture (I use sifted unbleached flour, so I just mix the following ingredients with a wire whisk.) 
                          2 to 2-1/4 cups all-purpose or unbleached flour
                          2 tsp. baking powder
                         1/2 tsp. salt
                         1/2 tsp. vanilla

Divide dough in two parts.  Chill 1 to 2 hours so it will be easy to handle.  Roll dough, one part at a time on a floured surface to 1/8 inch thickness and cut with cookie cutters that have been dipped in flour first.  Keep other part of dough chilled until ready to roll.  Transfer to ungreased cookie sheet and bake in preheated oven (375 degrees) for 8 to 10 minutes.  (Use a spatula to transfer the uncooked dough to your cookie sheet.)  

If desired, Frost with Confectioner's Sugar-Water Glaze while the cookies are still warm.  I like to make small bowls of different colors, and "paint" the cookies.  I use an inexpensive water color brush for each color (wash the brushes first).

Confectioners Sugar-Water Glaze

Blend together 1 cup sifted Confectioners sugar and 5 to 6 tsp. water.  Add food coloring, if desired.  Brush glaze over cookies while still warm.


Hugs,

Deborah

Rare Burst of Energy & the Fall Out

Image Courtesy of [Stuart Miles]
/FreeDigitalPhotos.net

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

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

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

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

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

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

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

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

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

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

Cleaning the Master Bedroom: Part 2

In part 2 of Cleaning the Master Bedroom, you will have two lists, one for those of you that need a basic list and a second list that is for a deeper cleaning.

Don't panic.  You only need to work from one of these lists, and these are suggestions. They are not laws or rules.  The cleaning lists are meant to be a guide, so relax and work at your own pace.  This is not a race, nor it is a time to push yourself beyond what your body is able to handle.  I have inserted hints along the way.  Before jumping in, read the hints.  They are important.

Number 1 Hint:  A timer is a great tool to use for cleaning.  If you have been very sedentary or you are coming back from a flare or relapse, you may need to work in short spurts, then rest.  I suggest setting your timer for five to fifteen minutes for each job;  however, when recovering from a flare, I have worked in short spurts of one minute to 3 minutes.  You know your body better than anyone else.  Sit down when you need to.  Moreover, do not forget to stay hydrated.

Hint:  Nearby, have boxes, baskets or hampers marked throw away, give away, put away.   

Simple List:  Cleaning 101

• Day 1  Pick up any clothes lying on the furniture or floors, that includes shoes. Put clean clothes away, put dirty clothes in the clothes basket or washing machine, and put your shoes where they belong.
• Day 2  Clean trash off the dressers and bedside tables.  Use your marked hampers, baskets, or boxes.  Then, take care of the items in them.   
• Day 3  Now, you can dust.  If it has been a while you may need more than one cloth or Swiffer Duster refill.  Microfiber dusters and cloths work well too, because they are washable, as well as holding a good amount of dust.  A vacuum cleaning wand or an ostrich feather duster works well on lampshades.  
• Day 4  If you did not wash your sheets after raising all that dust, it is time to change your sheets.  Get some help shaking out your bedspread if you are not going to wash it.   And of course, make the bed.
• Day 5  Vacuum and enjoy your clean, beautiful room.

Hint:  If you tend to be obsessive or a perfectionist, let it go.  You will only exhaust yourself, and most likely you will end up procrastinating.  Set your timer, and know your house is going to look better.  It doesn't have to be perfect. 

Deep Cleaning List (For bedrooms that are reasonably neat, because you       have been hanging up your clothes and you usually put away your shoes. )                      

• Day 1  Pick up any clothes lying on the furniture or floors, that includes shoes. Put clean clothes away, put dirty clothes in the clothes basket or washing machine, and put your shoes where they belong.  Walk starting at the door, and go to each area of your room.  Remove items that do not belong on your dressers and bedside tables.  Rest.  Dust.
• Day 2  Use the long handled cleaning wand on your vacuum cleaner and vacuum around the baseboards.  Rest.  If you have enough energy, vacuum the center of the room too.  (If there is someone in your house who will help you, ask for assistance vacuuming under the bed. Otherwise, do this another day.)
• Day 3  If you like your furniture to be polished and you can tolerate the scent, you might want to polish your furniture.  This an optional item, but sometimes I like to do this because it helps clean off rings or anything that is missed with a duster.  Rest.  
• Day 4  Wash and Change your sheets.  If you feel well, check your mirror an window for finger prints or doggy nose prints.   
• Day 5  This might be the time to put up a new picture or change around your pillows, or maybe you should just enjoy a cup of tea in your beautiful bedroom.  A nap might be nice too.  Follow your heart and pace yourself.     

Hint:  We are trying to make our houses reasonably clean.  This should be a            process you enjoy, especially the results.  Perfection is not an option              here.  You need to care for your body, otherwise, you may have a flare            that keeps you from doing what you care about.

A Final Word

When we deal with illness that causes chronic fatigue, it is important to be patient with yourself.  Sometimes, a one week plan becomes a two, three, or four week plan.  The important thing to remember is everything you clean or declutter, no matter how small it seems, adds up.  Eventually, you will see a difference in your house.  

Moreover, you learn that even if you have a setback, you can take baby steps back to reasonably clean.  I have had to do this many times.  I would be nice to be able to say that my home is always clean and I am always neat. However, that is not the case.  When I have a relapse, I don't get much done. Things tend to pile beside my recliner.  However, I have seen an overall improvement in my attitude.  Instead of feeling frozen and being disgusted with myself, I know I can take those five minute baby steps back to reasonably clean.  

Finally, if you have not already developed the habit of cleaning up behind yourself, you will probably become more conscious of putting items away immediately.  And remember the old adage, "If you get it out, you  have to put it away."

I hope you have a fruitful week.  May you have a week filled with blessings.

Deborah

Pacing Yourself, Resting, and Getting the Job Done in Baby Steps

Image Courtesy of [Danilo Rizzuti]/FreeDigitalPhotos.net

Today, I get to exercise practicing the art of slowing down.  While I write this, I think, "As if I wasn't slow enough already."  It is true that I don't see myself as speedy anymore, nor do I  accomplish everything I would always like to accomplish, but that doesn't bother me like it used to.  I have learned to accept it as part of my life, and I have learned I can still make improvements in areas that for a while, seemed impossible to change.

One of the things you need to learn when dealing with chronic illness is pacing yourself.  Sometimes, it includes uncomfortable attempts to change one's upside down schedule to a more normal one.  When I woke up today, after only sleeping about 5 hours of only partially restorative sleep, I decided to make another try at staying awake and going to bed at an earlier hour than usual.  Have you ever tried to do something like this?   It may or may not work.  Unfortunately, my night owl tendencies tend to override a normal daily schedule with the fact, I often lie in bed wide awake, even when all I want to do is sleep.  I have found different ways to compensate, and I have gotten to the point in my life, it is not worth it to agonize over a weird schedule.  It is what it is.  

However, once in a while, I have to try to normalize my schedule to fit in with some of the scheduled activities I want or need to do.  If it works, great!  If it doesn't, I am not  going to be miserable and guilty over something I can't help.

The second thing I want to mention about pacing is knowing when to say no to work.  Sometimes, we feel like we have to force ourselves to do things, even though our bodies are drained and the very thought of work is almost painful.  The bone deep fatigue is something we can feel gnawing at our muscles and nerves.  Our cells are depleted of the energy they need to function normally.  Sometimes, it hits us unaware.   And there are times, it is not surprising at all.  

However, even though the fatigue is there, we know there are things that need to be done.  Only  you can decide what is important.  If you still have children that live at home, then sometimes you have to push through to get something done.  However, you need to remember that when you give in one area, you will have to let something else go.  Otherwise, you could end up where I was a few years ago, which was on empty--able to do nothing.  And I have never been able to fully recover.

If you have been following this blog, you know I have been trying to make our house less cluttered, as well as making it a welcoming, comfortable home.  I have had to contend with dark walls and changes that were not in my former home, which was newer;  and, it is even more challenging with my disabilities.  However, I have been taking baby steps, and I am seeing changes that help improve our surroundings and my motivation. 

It seems to me that getting started is often the hardest thing to do, whether you are ill or not.  But if you take the first step you can usually take another one, and then another one.  And the wonderful thing is that the first step can be as small as putting one thing away or cleaning for one minute.  The pre-step can be visualizing what you are going to do, and how you are going to do it.  

1.  Yep, looking really bad.

That is how I got this sideboard cleaned  off -- one baby step at a time.  In fact, I have more to do to complete the job:  I want to decorate.  But I have done the hardest part for me, which was to clean it off and not just shove things into a bag or box, and stick it in a closet.  It took me about two months to get this done, because I have been working on the whole dining/work room

3.  Here, I have a nice clean palate to work with.
I see  endless possibilities.  Woohoo!

2.  It's better, but very dusty and there
are those icky little pieces of paper  to
go through -- not my favorite thing.

Finally, I want to end with how I am pacing myself.  Today, this sideboard and wall does not have to have objects placed on it.  In fact, every time I walk by it, I can enjoy the uncluttered surface and anticipate with enjoyment the thing I like better  than cleaning, which is decorating.  Moreover, I think I may still have a couple of boxes that were never unpacked from moving.  Next week or sometime this weekend, I might have Christmas in May and discover what is in one of those boxes.  Delicious anticipation...  Will it be something that looks good on that wall or on the sideboard?  What fun it will be finding out!

One final word:  I believe you can learn to do this.  I have not gotten to this point overnight.  I have been working on rebuilding good habits and learning new ways to get the job done over a period of years.  It took not being able to do anything for me to learn how to do things in  baby steps, and to give myself a psychological break.  Be kind to yourself:  do what you can and realize tomorrow is another day.  We are building habits.  That does not happen overnight.  

God bless you and have a good weekend.   

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.

Decluttering With A Timer

Image:  Balancing Act by D. Bolton

Hi Everyone!  I was just picking up clothes to hang up or put in the dirty clothes in my master bedroom.  I was in the closet, and I realized I was holding my breath.   Also, I began to feel shaky.  This made me think other people may start to breathe faster or hold their breaths when working with at timer.  Either one is not a great idea if you have a problem with chronic fatigue.

Decluttering with a Timer

• This is not a race!  The timer is being used, so you know when to stop.
• A timer is a tool to encourage you to work in an amount of time that will not wear you out psychologically or physically.  The timer is your friend, not your competitor.
• Breathe.  I began taking slow deep breaths in my closet when I realized what was hPpening.
• If you give out before the timer does ( I am talking about legs shaking, body says sit), Stop.  The clutter won't run away, and you can come back to it later.
• Work in increments of 5 to 15 minutes.  I have found I can start with 5 minutes or less after a flare-up (relapse), and that gives my muscles a chance to grow stronger.  If I jump into things too quickly, I end up too tired to do anything and discouraged.  As I grow stronger, I can add more minutes.
• Sometimes, you can go to a less physical activity after doing something  that requires a lot of effort, but listen to your body.  You should take breaks.
• The rules here are not ironclad, but they are a guide to help you pace yourself.  Sometimes, I am able to go past 15 minutes, but I often pay for that by being more fatigued the next day.

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.

The First Christmas Supper 2012

Happy Birthday, Jesus!

Tonight is the night of the first Christmas Supper of 2012 for me.  I don't go out much anymore, so I look forward to it, but I also feel a bit of anxiety.  When my husband came home for lunch, I asked him teasingly, "Should I go for beautiful or sick tonight."  Those of you who have Fibromyalgia or/and CFIDS probably know what I was feeling when I said that.  I was thinking about those people who know church services I have missed, etc., and when they see me, I don't look sick.  And I have to say that I don't really want to look sick.  I just get frustrated when I know there are people that probably don't believe it.  I admit -- I am still afraid of being judged.  By the way, I still vote for looking the best I can look.

As much as I know about my illness, there are times I get so frustrated with myself -- I still have moments I have to let putting out energy remind me that life in the Chronic Fatigue Immune Defiency Syndrome realm is never going to be normal, unless a miracle occurs.  I wish someone would tell me why I still feel guilty about something I can't help.  I don't carry that guilt around every moment, but it hits sometimes.

There are things I could probably do if I could afford to have people to do some of the things I have to do at home.  However, I have to make a choice;  and the basic things of life need to be done.  My husband is getting older too.  When I can cook supper, wash clothes, or clean the areas in the house that need to be cleaned, I am helping him.  That is the way I can support his ministry in our church, which still makes it our ministry because I am his helpmate.  I want to sing in the choir, go to every service, play piano, sing solos and do all the things I used to do.  Sometimes, I am so sad I cannot do this, but someday I will be praising my God in Heaven with more energy than I ever had.  I will be able to dance on my toes for Him and leap in the air, and sing too.  So I praise God with all my heart that He just put this picture in my mind to share.

For all you out there that have any chronic illness:  Merry Christmas!  We do not need to fear or grieve, but praise God that in the name of Jesus, we will one day be whole.

P.S.  I won't be writing as much during the Christmas Season, but I always try to remember to post it.  I will also check into a place for you to subscribe.
Love,
Deborah

Grandmother's Adventure

I wanted to come home after three and a half days of being with my daughter, son-in-law, and seven grandchildren and tell you I feel great, that I paced myself so well I got all the rest I needed.  I told my husband that I had always promised to tell you the truth;   and I want to give you a glossy, spiffed up me instead of the truth that I am exhausted.  By the time I got out of the car in our driveway, I could barely walk.    After sitting in the car for two and  one half hours, I could barely move my knees.  It's a good thing I took my cane with me.  I needed it for going up steps and down steps, also for getting out of chairs.

The knee thing is a little more than my regular fibromyalgia.  I sat down in a chair Monday to put on my socks and shoes, and I felt something snap on the outside of my knee.  Of course, because I am favoring my right knee, now my left knee hurts too.  Since I am home now, I can rest and have some quiet, but I still miss the pitter-patter of little feet around me.   So this afternoon, I have watched Christmas movies, tried to write, and also almost fallen asleep several times.  Right now, we are watching The Canadian Tenors on PBS, and I have tears in my eyes.  The emotion that wells up in me as they sing in my super-fatigued state is almost too much, but how can I not listen to the glorious music?

So what can I tell you about balancing your life and pacing yourself?  Do the best you can;  but sometimes, you have to be the yourself and live with the consequences.  When special moments come to spend with children or grandchildren, it is almost impossible to hold back, unless you are already totally exhausted.  I planned as much as I could, giving myself plenty of time to cook my casserole and pies.  I was totally unstressed the day we left.  I do not remember any time in my life I have felt less stressed, than when we left on Wednesday.    However, my body thought differently.

I had decided to work in my art journal, and all of a sudden
I became the center of interest.  It started with our 3 year old
grandson joining me and painting with markers, then switching
to my watercolors.  A couple of the older children wanted a
demonstration of automatic drawing, which was not what I
had planned at all.   You can guess what happened.  Coloring the
automatic drawing became a kind of free for all.  Know what --
it was absolutely wonderful.  We had fun!

Even though my daughter has quiet times for the children everyday and even though I took naps everyday, the seemingly constant motion of family in and out and around tired me out.  I enjoyed all the special times with them.  We read, we walked  outside, we played with the dog, played basketball, and made Christmas decorations. They even helped me paint in my art journal after some of the children did their own pictures.  We did spread these activities out, and my basketball playing was limited to throwing a few baskets.

One thing that made me really happy was I could not have done the things we did a year ago.  That seems to be the nature of Chronic Fatigue Syndrome and Fibromyalgia;  therefore, I plan to pace myself in my daily life and enjoy the special moments.  Right now, I am saying it is worth the way I feel now, if my grandchildren have good memories of our times with them.  Also, they know that I put out extra for them, that I cannot do the things I did several years ago.  When knees and other parts of the body do not work right and one is using a cane, it becomes an obvious picture of ill health.  Love covers many of the downsides of too much activity, and this was one of those times.

Sidetracked or On Track?

All I need is one small thing to sidetrack me.  My mind can really get going on that plant I have been meaning to clip out of the gardens for months or that drawer that needs to be cleaned out.  Does that happen to you? Do you ever walk by something and after 20 to 30 minutes, you realize your body isn't used to what you are doing, but you want to finish the job?  That happened to me, because I told my husband I would take the dog out, because he couldn't come home for lunch.  One thing leads to another.

When I started clipping those weed plants, that you can't pull out, I just kept going.  I am semi-glad I stood up and got sugar water poured on my head and back from the hummingbird feeder.  At least, it slowed me down.  To top it off -- those plants have absolutely nothing to do with getting ready for Thanksgiving.  Urgh!!

Speaking of Thanksgiving for those of you who live in the USA, are you having to prepare food or the house for family and friends to come over?  If you are I hope you have already done your shopping.  It is amazing how certain items seem to disappear from the shelves.  Are you like me?  Have you always known your pie tastes better than store bought, so you would put yourself in extra fatigue and pain to make it?  Is it a matter of pride?  I can only ask these questions, because I have been there so many times.  Next question:  is it worth doing that to yourself at this late date?  Homemade pumpkin pie tastes good at Christmas time too.  And I don't know if you can have pumpkin pie at Hanukkah and some of the other religions.  That just happens to be one of our family traditions.  Have you ever bought a smoked turkey?  Ummmm... Ask other people to help.  Buy rolls that you just stick in the oven, instead of making them.

If you are beginning to feel stressed and overloaded, give yourself a break.  I have learned there are times I can't have my pumpkin pie and eat it too.  I enjoy being with my family more when I have saved some energy for being with them. This year we are going to our daughter's house for Thanksgiving;  and I am taking pie and a casserole, but they can both be prepared a couple of days ahead.  So today, I will cook the casserole.  It tastes better after it sits a couple of days anyway.  However, if I run out of steam, I  will not hesitate to send my husband to the store for pumpkin pie.  Also, as a good friend reminded me today, I don't have to clean my house before I go.  The mess is not going to go anywhere:  it will still be here.  I sure do love my friend.

Incidentally, did you know you do not have to go to the store on Black Friday?  Isn't that awful?  We have a wonderful holiday to thank God for our blessings;  then, the day after is Black -- yuck --why couldn't it be white or green or red or Family Friday?!  Some stores are opening on Thanksgiving.  I feel so sorry for employees that have to work on a family holiday, unless, they are in the travel industry or medicine.  My dad had to work if it was his day to work, so we always timed our family celebrations when he was going to be home.  That was an aside -- back to shopping.  

Since I have been ill, I have been letting my fingers do the walking on the computer more than I ever did before.  I have to admit to having been an Amazon.com fan for several years.  I even get most of my purchases delivered for free.  It is worth a Prime Membership, because it saves on shipping.  My grandkids love getting a box in the mail from Amazon.  They will even put a message in there for you.  We would love to be there for all their birthdays, but sometimes my husband's work schedule doesn't allow or I am too sick.  

Speaking of stores, I hope the ads on my site do not offend you.  I don't work outside the home anymore, so I thought this would be a way I could save money for my next computer.  Unfortunately, computers don't last forever.  I just want you to know that I started my blog to help other people with chronic illnesses, not to make money. Moreover, I love having the ability to post things that have helped me or I think are cool.  I am full of asides today.  I just wanted you to know, the blog is for you.  That is the important thing. It is my heart's desire for you to be blessed.  I am praying for a happy and healthier holiday for you.  God bless!

Gentle hugs, 

Deborah