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

Wondering How to Come Back from this Flare-up?

I want to be like this bee, doing my work
without having to think about it -- just do
it because it needs to be done.

Today, I am figuring out how on earth I am going to start being active again.  I have been so fatigued the past month and a half that I have lost more ground.  After a long period of inactivity, it is difficult to get moving again, especially adding housework.  And as you can imagine, it is also overwhelming.  I have been a pajama girl for long enough to make pajamas a habit again.

One of the things I abhor about flare-ups is the inactivity and having to make a comeback.  I am never sure how much I can regain, because one loses muscle tone during periods like this.  Also, it was not a flare-up alone:  it was illness on top of chronic illness that caused the flare-up.  My sleep schedule is a shambles, because it does not comply with "normal."  And, I have had to take frequent naps.  It is amazing to me, who has never been a nap person, that I need to lie down in bed when I was there two hours ago.

I feel like I need a month at the beach, basking in warm sunshine and taking leisurely swims in the salt water. Or at least floating in the salt water.  Right now, a wave would probably knock me over, because by the time I walked down to the beach, I would have to rest.  Sometimes, I wonder if I would feel better if I lived near the beach all the time.  OK.  That's an aside.  I have to grow where I'm planted, and I am planted in a small southern town in the USA, needing to manage another Chronic Fatigue Syndrome flare-up.

In my zeal to encourage my readers, I was hoping I would not have to go through this cycle of regulating my habits and pacing again.  I wanted to manage my illness "perfectly";  however, that is not my reality.  And I am longing to know if other people that have CFS/ME/CFIDS go through these huge ups and downs, or if they are able to slog through the flare-ups.  

As far as housework goes, I have cooked a few meals, done a few cleanups, and done some laundry.  Also, I have been able to do some writing, but I have had to get off the computer much sooner.  Even using the computer makes me tired.  I am already there and this post has been an easy one to write.  So there it is, laid out, admitted, and wondering whether this will ever end or get worse.  I need to close my eyes again.

Love you guys.

Action Step: Toolkit for Success

Introduction
Honestly, I am hoping I can make this a short blog post today.  I think we could all use that.  I have the Facebook Page up, but it took me lots of time, even though Facebook does make it easy to walk through;  but I try to do my own artwork, because I don't want to infringe on any copy-writes.  Also, I never set up a public Facebook Page before. The Facebook Page is called Balancing Life Changes / Living Better With Chronic Illness.

On to the Main Subject
Yesterday, I asked you to think about a habit you would like to work on, or one you need to work on -- just one.  Whether you are male or female;  when you have a chronic illness, especially when it is at it's worse or you have overdone,  it makes some of your brains feel like they are slogging through a fog.  In fact, I am having to focus extra hard right now, because I am having one of those days where my brain and body are extra tired.  So pick one thing, one habit you need to change.  My habit I plan to work on is setting a timer when I write.  I need to get up to do other things, to move my body or I get to stiff, and I need to rest my brain.

Your problem may be similar to when I have been extremely sick and sedentary.  My motivation was at its lowest, and taking a bath or shower was a major issue for me.  Or you may be somewhere in between my current situation and my lowest.  The basic way to change the habit is one step at a time.  And you may be surprised, one step may make you feel like taking another;   which, in turn, increases self-esteem and motivation.

I am going to keep this as simple as possible:  if you are sitting in a chair or have a hard time getting out of bed.  Yes, I know it hurts.  Just lie there and