When Your Body Gives You Another Day or Hour of Betrayal

The truth is, I think I have been managing better;  although, my life is not the optimum life I would have expected at 62.  Considering I have several illness, as well as FM and CFS, I guess I am still doing better than some people are.  At least, I do not spend every day in pain that refuses to be shut out.

However, there are moments when the pain or the weird sensations that seem to be part of the FM patient's plight get me down -- way down.  If there was no medicine to take and the pain and weird sensations did not stop, I think they could drive a person mad.  Also, I get deeply tired of the fatigue -- tired of being tired is how I put it earlier this afternoon.

Sometimes, the tears and fog come with the icky tingles and the anxiety.  I start to remember how long I have had this and wonder how I could bear it another second.  But I do.  I have even sometimes asked God why He does not let me die.  However, I know He has a purpose for my life, so I keep on hoping.  I lie down in my bed to try to quiet what is going on, pray, say the 23 Psalm among other scriptures, and I cry.

Then, I usually get up to do something else after that.  Today, I went out on the porch so I could watch the breeze go through the trees and feel the outdoor heat.  I was cold.  Today was a hard to regulate my bodily temperature day, and I have been feeling chilled in air conditioning.

I want you to know you are not alone.  Everybody does not have hunky-dory lives all the time.  Just because someone sounds cheerful does not mean they are not carrying a burden.  Sometimes, I write, and I am afraid you think I can get everything done on my Weekly Schedule.  I don't.  It's a guideline for when I am asking myself what to do next.  I use to say to myself to stop being lazy, but now I realize I am not a lazy person, because I cannot always get things done that I think needs doing.  That is not laziness, it is illness.

I encourage you to hold on to hope.  Look for the good moments, the restful moments, and the memorable moments.  Smell the roses.  And, when those blah days come, remember life is not like this all the time.  This too shall pass.  

Thinking of you often and praying,
Deborah

Focus and Distraction - Controversy? REally?

Oh no!  Did I do that?

Wow!  I did not expect my last post on Learning to Balance Life Changes to be a tiny hotbed of controversy.  I shared my last post on a couple of pages I frequent on a certain popular social media site, and someone felt spammed.  And I am so sorry.  I am not that computer savvy, nor do I have the desire to be a pest.  I don't like spam either.  And I would message someone or delete the post, rather than report it as spam;  unless, it was an obviously computer generated robot or it was objectionable, rude, crude content.  And I have to admit to having hidden some things that came into my page, because I don't like the language that some people consider acceptable.  But I certainly don't want to burn bridges to my friends.

If I post anything, it is to add to the conversation on the same general or specific subject;  and, I do it to be helpful.  For instance, yesterday, I thought what I posted might help someone see how I worked my problem, which was totally a part of my chronic illness.  I worked the problem by praying about something over a period of time.  However, I felt like I was near a breaking point, so I prayed again;  and, I finally had my answer.  I don't see that as a problem in dealing with chronic illness.  I see prayer as a plus.  That means you are giving it to God, instead of spending all your waking hours stewing over something. 

I am not having brain fog issues right now;  however, for a few moments, I wondered when I found my blog post removed from my own pages.  Well, now you may have guessed the social media; so I guess it is alright to say Facebook.  I think they do a lot of spam checking by automatic computer programs, so it is possible that the unnamed Page marked it as spam.  Isn't it amazing one can have that power on Facebook?  

People worry about stuff that gets on their personal pages. We can say no to things we don't want on our personal pages and our professional or wellness pages.  Also, it is good to let a friend know (in a nice way) if there is something objectionable coming from their page to yours.  Some accounts get phished (I think that is the right word).  Don't assume that something you see from a friend is actually from them, if it isn't in character.  I don't think we have to be afraid that will happen if we are careful about using passwords that are mixed with capitals, numbers, etcetera.  

I do think this blog should share some articles on handling Focus and Distraction.  The last article was one way to handle these kinds of problems.  And for the problem I was dealing with, that is what worked best for me.  
Sometimes, when that beast, brain fog, attacks, I have to also find other ways to manage.  So if you got cued wrong, I apologize.

Finally, I will never apologize for my faith in Jesus Christ.  I do pray about most things;  moreover,  I have made it plain from the very beginning of this blog, I will be talking about how my Faith is an important part of balancing my life changes.  And I whole-heartily recommend it to everyone.

Positive Weekend

Image and Words by D. Bolton

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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When Up Is Down, and Down Is Up

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

Did I mention my fingers are numb and tingly too?

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

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

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

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

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



   I hope you all are having a good day.

created by me for you

Light hugs to you,

Deborah

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

Not Your Fault

February 3, 2013

S L U M P or schlump (pronunciation shlump).  Have I mentioned that word too many times?  I feel like I have it stamped all over me.  On my forehead there is this stamp in red that is glowing "slump, bored, fibro-fog, shake it off, and why me?.  That is just the way I feel with the mire sucking at me:  I can picture my tortured feet trying to walk through the mud to get anything done.  And then -- there is that strange wonky feeling that I'm just a tad off, but if I got up I might be OK, only I cannot get up.  Or I won't get up.  I'm not always sure which it is.  However, if I wait it out without getting super reactive over my unwanted wonkiness, I will eventually be back to a higher level of functioning.

At least,  I know I am not the only one with Chronic Fatigue Syndrome and Fibromyalgia that sometimes feels like this.  I was feeling frustrated, so I thought I would look up some articles on motivation.  The first one was written in lettering so large, I knew I would be scrolling the page forever.  Yes, I know I can change the print, but that blog post was not about the motivation problem CFS and FM patients get.  So I changed the words in the search engine and ran across one of my favorite writers in the area of FM and CFS.  She had an explanation and suggestions that make sense:  It's easy to feel lazy when you just don't have the motivation to do something.  This probably is more of a physiological problem, possibly related to neurotransmitter imbalance, than it is outright laziness... ~Adrienne Dellwo~

February 7, 2013

I have been able to say, "Oh, happy day..." for a few days.  I have still been fatigued, but I have not felt like all productive activity was lost. I am dealing with fibromyalgia aches in unusual places, but not pain that has been incapacitating.  At least I think they are all FM;  therefore,  if I don't have some relief soon, I anticipate a doctor's appointment.  Something important to remember, when you have an illness like FM, is not all pain can actually be attributed to the disease*.  Today is a cool, damp, rainy day in my neck of the woods;  therefore, I am not at all surprised that I feel achy.  I have had Fibromyalgia long enough to know my triggers (most of the time).  Sometimes, I am surprised;  or maybe, I have just forgotten. 

Sometimes, I have to use a cane when I first stand up, especially if I sit too long, but I think that is due to arthritis stiffness in my knees.  However, fibromyalgia can also cause unsteadiness;  so combine that with arthritis, and you have a double whammy.  Considering I have an artificial joint in my left hip and thigh bone, I would rather be safe than sorry.  Once I am on my feet and have gotten those arthritic joints warmed up, I usually discard the cane, putting it beside the chair I sit in most often.  If I didn't I would surely forget where put it.  The lovely thing is I can smile when I say that.  I hope you can too.

*Unless there is a new classification, FM has not yet been classified as a "disease", but as a "syndrome";  however, I call it a Disease, because that is what it feels like to the people that are afflicted with FM.

Looping -- My Groundhog Day?

Do you remember the movie Groundhog Day?  Have you ever felt as if you were caught in an inescapable loop?  That's the sense I had last night.  I am caught in a loop of what I can only figure is seasonable depression.  Perhaps, I have a touch of SAD, Seasonal Affective Disorder.  All I know, is even though I thought I would escaped the January blahs this year, I did not.  I don't want to go anywhere, my sleep patterns are disrupted, and I am unmotivated to do much of anything.  The reason it feels like Groundhog Day is that I have to figure out how to get out of the loop again.

I know if I wait it out, the bad feelings will go away;  however, it gets old always having it come back.  I have to exert twice as much will to get out of this -- at least that is how it seems.  With prayer and faith, God will give me strength to get into a better routine.  And I will begin feeling better.  FlyLady says if your routines are established you can keep on going. This week I have been happy for each small thing I do a day.    

One of my favorite facebook fibromyalgia-groups stays very positive.  Am I being negative to admit my ups and downs?  I certainly do not want to bring you down or make you feel less positive.  Unfortunately, depression often comes in the Fibromyalgia package.  If you are encouraged that you are not alone, I have done my job.  I will start taking my babysteps again.  I am sure I will be able to get back to feeling better with each small step of moving forward in my life. I have hope.  Will you join me?

Fly-baby Deborah's Journey Out of CHAOS

Hello again!  If you read my last post and clicked on the word, CHAOS, you should have discovered FlyLady, Marla Cilley's website.  I discovered FlyLady.net about 6 years ago, and I thought I would be a genuine reformed fly-baby long before now, but I am not.

I suppose the general consensus is that a person was a slob before having found FlyLady, but that is not necessarily true.  Most of us manage to have a reasonably clean house, until something happens that turns things upside down.  For me, it was chronic illness, which gradually grew worse.  The depression that came with the illness did not help.  I had no motivation, and I had no energy.  That was not a good equation for keeping one’s house clean and uncluttered. 

First of all, for the uninitiated, CHAOS is an acronym for can’t have anyone over syndrome.   That absolutely says it all.  I would have felt like I was going to die a thousand deaths over the embarrassment of having someone walk in my house after I got sick.  And on my good days, I managed to make myself feel more ill by doing a marathon cleaning job.  At the time, I didn’t think Depression or Fibromyalgia should keep me from getting my housework done.   I couldn’t figure out why I had long periods afterwards, that I couldn’t do anything.  I also found out I have a liver disease called NASH.   Furthermore, I found out I have Hypothyroidism and Chronic Fatigue Syndrome;  so, I got in this cycle of letting the clutter pile and waiting to feel good enough to do something about it.  Obviously, I needed to find a better way.  My self-esteem was going down the drain quickly!

So what happened after I found FlyLady?  Did I go through her thirty-one day plan and become renewed and revamped?  I wish I could say I did, but it wasn't quite that easy for me.  It was kind of like yo-yo dieting.  I didn't have the energy to stick to the plan every day.  Some days I didn't feel like taking a shower, much less getting out of my pajamas.  I had to find a way I could do this at my own speed.  That is what I am going to share with you.  You are going to read how I adapted FlyLady’s excellent plan to my own life.  Moreover, I am still working on it.  Let’s see if we can share the things that are helping us manage our lives better – our lives as they are now.

Questioning Why I Have a Difficult Time Doing Activities I Desire to Do

For the most part, I have developed an upbeat outlook on my life;  but, every once in while, I go through the questioning process again--because there is so much I want to do.  And--of course--I would like my life to be like it was when I was healthy.  Thank goodness there is support in the cyber world for those of us that have CFS/ME.  When I start questioning myself about why I don't get out of the house more or why I do not accomplish more around my home,  I read what other people say and I know I am not crazy, lazy, or alone.  I have an illness that I don't want, nor did I ask for it.

Today's article is a departure from my series on using FlyLady's techniques to help me simplify and boost my habits.  I found myself questioning again--feeling guilty for staying home when there are church services on Sunday to go to, funerals to attend, children to visit, boxes to pack for a move, and birthday presents to craft (that are late).  I miss my old life;  but when I try to return to it, I am broken down for months--too fatigued to bathe, pick up, do laundry, or cook.  I find it difficult to do the basic things most people take for granted;  because once I put out the energy, it is gone for days, weeks, or months.  Therefore, I am getting very good at conserving my energy for the things I must do.  I have learned to pace myself;  even though sometimes, I still get a bit confused over what I should do.

Today, I read something that helped me to put my life, as it is now, back into perspective.  I would like to share one of the comments left at the end of Adrienne Dellwo's article Understanding Chronic Fatigue Syndrome: A Simple Explanation--This Goes WAY Beyond Tired!.

 Every chore is like doing a marathon
I've had CFS/ME since 2003 and usually explain the symptoms to friends and family as a "never-ending flu". However, after doing stress exercise testing at the Pacific Fatigue Lab in Stockton California I have discovered a new way to explain it. The testing shows that Post-exertional malaise is so bad that the day after the maximum exercise test day #1 it looks like I had run a marathon, not exercised for 15 minutes. It shows that I don't even produce enough energy per day that is required (on average) to take a shower. That seems to be a good way for others to relate the CFS symptoms to their own lives.

—Guest missjanny 

I invite you to make this a conversation.  I have found it very helpful to read what others have to say.  Let's support one another.