Risking The Truth

Have you ever felt like you were putting yourself out there when admitting to your own weakness?  Isn't that how it feels  when you have to admit to someone, who does not quite understand your illness, that you  cannot do something or go somewhere?

When you get to the point you have to tell someone, I  do  not have the strength or the energy to go on a trip,  take that job, go out  tonight, teach that class, or volunteer in that organization -- it often feels like a huge decision, especially if it is something you  want to do.  One finds himself pulled this way and that.  Sometimes, it feels like a weight on the chest that sits there, until one is brave enough to admit this is not something he or she can do.

And then, there is the issue of being honest to help someone who suffers like you do.  The best example I can think of is what I wrote in "Digressing from Needing a Vacation." A synopsis of what I wrote goes as follows:  when you are constantly ill for years, there are moments when you might feel like you cannot take another moment of this.  This can lead to thoughts of suicide, but suicide is not the answer.  If this is a thought that plagues you, you should have psychological counseling.  It is worth the risk of being honest to tell a therapist you have had this thought.  My preference is a Christian therapist, but that because I know a Christian therapist would understand how important my faith is in my life.  There are things in life we should not have to tackle alone.  It is not failure to see a counselor that can help you manage the thoughts you have about your life in a healthier way. That is what I  call being smart and handling your illness.

Finding peace in a life that has become a daily round of illness is challenging. It sometimes feels like climbing a mountain you can never leave or being inside bars that will not let you go.  I have felt sometimes like my body has become a prison.  However, you can learn to live in a new normal. I have written about how I find that peace in God and in letting go of negative thoughts by turning them around into positive thoughts.  

Recently, I had to admit to a loved one that I couldn't spend several days visiting.  It was hard.  I did not want to call.  I was afraid of how that person would feel and whether she would understand.  But I had to do it, because I know my body.  I know I have been more ill this past winter and not yet totally  recovered. When I made the plans, I was optimistic and thinking I would be ready.  Unfortunately, this is not the case.

I had to risk telling the truth that I cannot handle the type of trip we were planning.  At least, I cannot at this time.  It was like a weight lifted when I was truthful.  I admitted my weakness and my inability to handle what would have been a fun trip during a time of feeling healthier.  I'm not saying I don't feel disappointment over not going somewhere I wanted to go.  However, I do feel peace in having been truthful.  And I have let the disappointment go. 

I have many blessings in this life.  I think I will count those, and smell the roses.  That is life-giving or life-living for me. 

Perhaps you have heard the saying:  "Have an attitude of gratitude."  Even in negative circumstances it helps one to get through tough times to count your blessings.  There are time one feels like he or she is barely hanging on, but that is part of life.  Sometimes, if I feel depressed, I tell myself it will pass.  Also, I find something to do:  I don't dwell on my feelings.  I feel them and I try to move on to put activity appropriate to my physical condition on that particular day.  

Today, I could not get motivated, but I have had some unusual things going on this week.  I considered that and a friend said, "This would be a good time to read a book."  So, I did.   No guilt.  Then, later on I took a shower and washed my hair even though I did not feel like it.  Funny how I feel better now, and I am not feeling guilty about not cooking supper or not doing housework.  Tomorrow is another day.  The world is not going to quit turning, because I didn't fix supper or didn't do the laundry.  If it was going to quit turning over my putting something off until tomorrow, we would be in lots of trouble.

Until Next Time,

Deborah

Who Is the Real Me? Please stand up.

Many years ago, there was a show on television called "What's My Line?"  I bet most baby boomers remember it.  The celebrity panel had to ask questions of three contestants and figure out who the real scientist studying the life cycle of beetles was, or which boy had a record contract.

As far as I know, I have no panel here, but I have been sick so long that sometimes I feel like asking, "Who is the real me?".  Sometimes, I wonder how much of my staying home has become agoraphobia and how much is the fatigue that goes with Chronic Fatigue Syndrome/Me.  Have you ever felt that way?  Do you feel like being sick has affected you psychologically, or you wonder if it has.  It is hard enough to have physical problems, but to have to fight the psychological affects seems altogether unfair.

I would like to share a comment I made on Holley Gerth's blog post, Your door Is going to open.  

First of all, Holley, I absolutely love that red door. I have been thinking about colorful doors: I may have to add that to my list of want-to-do’s-someday. Secondly, I needed that, and I am absolutely afraid to ask for help from people at church. I’m the minister’s (of music and senior adults) wife, and it is very embarrassing to me I have been a shut-in for several years. I make it to church when I can, but the people here don’t know the real me, the outgoing me, the one that wants to be out and about in church and around our community. There I said it. Sometimes, I think if I had a husband that didn’t have to leave early, I would find it easier to get to church, but is is exhausting. Sometimes, I feel so very alone. I miss having girlfriends to do things with and stuff like that. I miss entertaining and bringing people home for meals. I feel so stuck in this area, but I am hoping that will change.

I don't know how many of you feel like there are portions of life passing you by.  I am definitely in favor of living life to the fullest you are able.  However, if you have been sick for a long time and you have experienced many flare-ups and a lot of total exhaustion, it changes your life.  I don't think other people realize how lonely we can get for human contact, especially if we were outgoing people before we got sick.

The plain truth is that having chronic fatigue changes your life in ways we could never have truly imagined before we were sick.  I hope somebody reads this that is in your life, that does not understand;  because, it is so very hard.
Today, I close with tears in my eyes that our lives have been changed so dramatically.  We are blessed to have the support we have online.  Some of us have become friends with strangers from other cities, other states, and other countries.  We do know people that understand, because they have Fibromyalgia, Chronic Fatigue Syndrome/ME, Lupus, MS, POTS, or the various other diseases that suck away our energy.  

Gentle Hugs to all of you.  I understand.

Deborah

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Winter Blues

Image courtesy of [Vlado]/FreeDigitalPhotos.net

Hello, Dear Readers.  I hope your winter is going well.  Mine has been a little rough, but I am hanging in there with less depression than I have had other winters when the bottom seemed to drop out from under me.  My body does not like cold weather and the various changes in temperature, in barometric pressure, and living through dark, cloudy days.  Cold weather and dampness is particularly uncomfortable.

Do you have more pain and fatigue during frequent changes in weather or during the winter months?  Those of us with sensitivity to weather changes and temperature truly walk a balance beam:  we're too hot or too cold  -- dripping perspiration because we were too cold and turned up the heat, or we have feet that are cold even with thick socks.  There is actually a name for this condition:  dysautonomia which means one's autonomic nervous system does not regulate the body's homeostasis like it should.  Common sense probably dictates to most of us what to do to be more comfortable, but being a inquiring soul, I usually like to have more information.  Adrienne Dellwo wrote an excellent article on this subject.

A Very Late Flu Shot

Right now, I am wondering if I should listen to the news on television less;  because I looked at that big flu map of the United States with major red zones, and I decided  a mostly red map meant I had better get that shot.  So when I did my errands yesterday, I dropped in at my pharmacy and got that needle with flu vaccine stuck in my arm.  The shot arm is only sore when touched, but the rest of me feels like one big ache.  

Courtesy of
[David Castillo Dominici] / FreeDigitalPhotos.net

I probably would not have gotten that shot had I not watched the news.  However, my memory of having influenza in the mid-nineties made my decision easy, because I was very sick for about two weeks.  And it took a couple of months before the weakness really left me.  I may forget many things, but I doubt I will ever forget having influenza.  Early one morning, I noticed a strange achy pain in my big toe;  and when I woke up, I felt like I had been run over a few times.  My whole body hurt from head to toe:  I was nauseous, but I couldn't throw up.  I think I would have felt better if I had upchucked.  My fever skyrocketed and I am not prone to easily running a fever.  I had the respiratory symptoms, and I was very weak.  The flu is horrible, and it can be dangerous.  Even if one isn't going to die; at the time, you are sure it would feel better than being sick in that bed. 

Now, I am wondering how long is this flu shot going to make me feel like I have a mild case of the achy portion of the flu.  The only other symptom I have is fatigue.  Now, isn't that a big surprise?  Sarcasm intended.  This morning, I was so thankful my dog is good about not going to the bathroom in the house, because I couldn't drag myself out of the bed until noon.  And then, I had to have a hot shower to feel human.  Usually, getting her on the leash and out is my first priority, even if I have to wear pajamas, but not today.

Did you know that it takes two weeks for the flu shot to keep you from getting  influenza?  I read that last night, as I took two ibuprofen, which can dilute the  vaccination.  Guess what!  I am going to take my chances on whether NSAIDS can dilute the shot.  Even my fingers hurt.  Call me a wimp when it comes to constant, unrelenting pain, and I won't be insulted.  

It is very late in the season to get a flu shot;  but if you are thinking of it, here is a good article from one of my favorite Fibromyalgia / Chronic Fatigue writers:  Flu Shots: Yes or No for Fibromyalgia & Chronic Fatigue Syndrome by Adrienne Dellwo.

Frozen, But Melting

Honesty, my policy of truthfulness to myself and others
Is not what I want to think about,
Because I will begin to doubt
         
             Me.

Frozen in a sludge of half-desire to jump in and Be, 
I wonder how I manage to get to this 
Point of having to push myself to get anything done.

I know what to do, but since I kept falling asleep
Today, after an uncomfortable bout of intestinal flurries,
I seem frozen to my chair.

And I wonder if other people are like me, 
Sometimes frozen, sometimes bustling in flurries of useful activity, 
Sometimes only able to get one or two things done,
And that has to be enough.

At least I got dressed and combed my hair, 
But I never put on my shoes, 
My fuzzy, warm socks caress my feet,
Leave me feeling relaxed and comfortable.

So I will accept these moments, knowing when I'm patient,
I escape the ice that encapsulates me.
Each small chip in it brings me closer to the me I like best.
I don't have to get depressed and cut myself down.
As the ice melts, I move a little more.

Self, talk nicely to me.  I needed a break.
My eyes are closing again, as my fingers
Rest on the computer keys,
C's and brackets cover my page...
cccccccccccccccccccccccccccccccccccccc[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[

Where is that light load of laundry?

Finding a Way to Survive the Holidays

What is special about this tree?  Not the perfect placement
of ornaments or the symmetry of the branches.  The special
thing about this tree is my grandchildren helped Grandpa
put it up and they opened the Christmas boxes and placed
the ornaments on the tree for Grandma.  It was a joy watching
them have such fun, hearing them ooh and ahh over the
ornaments,  and not worrying about whether the tree was
decorated like I would do it.  Sure, I changed a few around
after they left and I added more.  But seeing this picture
reminds me of the joy and love we have for one another.

Is there anybody else out there having a love-hate relationship with the holiday season?    Please understand, when I say hate, it is not the holidays themselves that bring that word into my vocabulary;  because I have always loved everything about them--the true meaning of being thankful to God for blessings great and small, for the fulfillment of prophecy in Jesus being born for the sake of mankind, and celebrating with friends and family.  

I suppose it is the changes in my life that have made each year more of a struggle.  Maybe, it is because I am reminded that I cannot do things the way I used to do them.  Sometimes, I wonder how I ever prepared the great feasts for my family, sang in the choir, volunteered in the community,  baked cookies and pies, wrapped presents, and not only cared for my family--but I played with them too.  Any time I could think of a way to make a special day and meal, so they would feel loved and we would spend time together I found a way.  How often I have thanked God for the creative mind He gave me, because it has been so helpful in my life.

Actually, last night I felt like something was eating at me, but I didn't quite know what.  I tried to write and there was a barrier there;  but now, I know the barrier was my feeling of inadequacy.  And I felt guilty, because I have sat  in my recliner so much the past two weeks.  In fact, after I finished working on the new background and header for this blog, I felt almost like I was waking up from a dream.  I am sure that is from a mixture of the brain going to another place during the creative process;  moreover, my routine has been decimated from being sick.

I would like to have my house at least halfway shipshape before Christmas.  It doesn't have to be perfect, only almost perfect -- just kidding.  However, I can only do what I can do, and I am not going to let myself get in a tizzy over what I cannot control.  I cannot help being fatigued:  that's a major part of the illness of FM and CFIDS.   I have to take care of myself first, or I cannot take care of anyone else.  Is there anybody reading this, who has already had the struggle of which I write?  Are you already wanting to do the fun things like decorating that take so much energy, but you dread being more tired or giving out entirely?  

My advice is to be careful to do only what you can do, because it is the spirit of the season that is important, not making our houses look like a magazine page.  I am hoping to listen to my own advice, as well, because I would love avoiding the January Doldrums, which is what will happen if I overdo.  

Therefore, I have a proposal, which may work for some of us -- I will write a day to day account of how to do some of the enjoyable holiday things without going into meltdown. Today is a new day and I am always ready to find a way to do things better with less energy, or at least save some for later.  So get ready for a new series for those of us that haven't finished all our Christmas cleaning, shopping, baking, wrapping, and decorating.  Intertwined will be honest accounts of how things are really going in my life.  Our bodies often are nervous, panic-ridden, and in pain under pressure;  however, the goal is to enjoy a season filled with peace and joy, regardless of our circumstances.  If you can find the time, perhaps you can go to my Facebook page, Balancing Life Changes / Living Better With Chronic Illness.  I am setting a goal for myself to have one useful idea added to it each day to make our holidays easier to deal with, no matter what your age, your faith, or your circumstances are.   

Example of Cognitive Dysfunction/Need for Renewal

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

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


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

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

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

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

Resting Is Doing Something

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

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

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

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