Family Pitching In

Image Courtesy of
[phanlopp88][/FreeDigitalPhotos.t

I want you to know how much your thoughts and prayers have meant to me.  We are having a wonderful time;  and, just as I knew my daughter and son-in-law would do, the were out in the kitchen making an easy supper of hot dogs in buns and left over corn, as well as salad.  Today, I took a long nap while they went to an interactive fishing museum.  They even caught fish, but had to throw them back.  :(  However, they understood why.  Also, I could not believe the nap I took.  I slept right threw lunch.  Amazing.  Could not hold my eyes open.  Now, I am ready for bed--pj's on, hair washed, teeth brushed, medicine taken.  I was falling asleep again while playing a game.  I love it -- falling alseep and not lying in bed.

Oh.  I just want to mention the CFS/FM buzz.  At noon,  I had that from all the morning  activity.  You can feel the buzz inside your body.  I don't know how else to explain it.  It may have something to do with our nerves, but I know it has something to do with to much input.  I also know that people, who have autism get that same buzz from the things that are too much input.  Connection?  I don't know. Just thought I would throw it out there.

I hope you are having a good weekend.  I am.  And, I am sure I will pay, but that is OK.  It is worth it to cuddle your youngest grand - 3 months and all of them up to 14.  Lots of hugs and cuddles going around here.  Hint:  do not get an electric recliner unless you have too, or you will be saying, "Keep your hand off the control."  a lot.  Frayed nerves on that one.  The only reason I have one is my sister gave me theirs when I had the hip replacement.  And, I have to admit my knees appreciated it at their worst.

God bless you all.  Have a good Sunday. 

Fixing Life Again

Have you ever tried to fix life?  Have you found out you cannot do it -- that you can only pray about things?  Or that you can let those things ruin every day?  Have you discovered you have to decide which to choose?  Do you ever feel confused and wonder if you should take a road you have never thought the right one?

Words Do Hurt

All I can say is that I have found myself turning myself inside out trying to please others.  Pleasing people I love is something I like to do, but when I try to explain myself or protect myself or be myself around some of these people, I get words thrown at me like darts.  I don't know if these people know what they do.  I think they still think I am well or better, when I push myself past my physical and emotional limits.  Then, they get mad when I crash.   Or they think I have gone mental, when what has happened is I have nothing left in me physically to do the every-day, normal things.  I have to go to bed all day sometimes.  Wednesday, I slept most of the day.  

Then, here come the questions:  are you sick?  how do you feel?  Hmm.... let's see...I was so tired, I wet the bed last night...nah let's not mention that one.  Am I sick?  Well, what do you think?  Could the fact I have a cane that I have to use sometimes be a clue?  Have I said a miracle happened -- I'm cured of the illness I have had for the last 15 to 20 years?  Could the fact I have not gone to the grocery store or cooked for two days be a clue?  Could the fact that I no longer pretend to be Mrs. Perfect to visiting relatives be a clue?

Could someone tell me when enough is enough?  Why am I the one that is supposed to always be nice, compliant, sweet, uncomplaining and patient?  Why do I have to listen to someone else complain?  But I cannot get mad because I might lose my husband -- not his words by the way -- someone else's. My husband is mature and loving:  he is human:  and he is mature and loving.  I will not let someone else's fears become mine, nor her insecurities.    

The point is that many people with chronic illness go through similar
mental /emotional abuse through the holidays or at other times.  I try to turn the cheek, keep my mouth shut, and wait for the offender to go home.  Some of you live with that person all the time.  Some of them do it on purpose and some are clueless people who never consider how words and tones of voice can hurt.  My question is how much is too much?  Will that person or persons even understand?  For some of us, we know some of the offenders are not capable of understanding.  I hate to leave this open-ended, but I am still figuring out what my solution is.  

The reason I had not written for the last few days was that I thought 2013 was going to start out so differently than it has.  I didn't want to be sad or write something sad.  But I promised you honesty, because we all have situations to deal with at different times in our lives.  I'm sorry if I rambled.
I am in healing mode right now -- Again.

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.

Is That Directed Towards Me?

"Behind the Veil of Pain'
Why do others think they can judge what is going
on in our bodies and minds, when they are not
our doctors or they choose not to understand our illnesses?

Have you ever felt a comment was directed towards you, by someone who doesn't understand your situation?  I experienced that today; and although I found it unsettling, I was not thrown into utter dejection, so I must be mastering the art of taking responsibility for my own care.  I have learned to pace myself and do only what I can do for that day.  If I don't I will pay and my family will too, because I'll have several days or more that I have no energy. I have learned that I have a new normal that I can live with.  I do not spend time berating myself over not getting things done that used to be easy for me.  I am not saying that I would not like to do more, but I have learned to be happy about the things I am able to do.  I cannot help what someone else thinks--in fact, I could be wrong--perhaps that comment was not directed towards me.  I am the one who lives within my body, and I know what I have done during a day;  therefore, I have to pace myself according to my own needs--not try to meet what I think is someone else's expectations.