Sunday, March 31, 2013

Needing to Temporarily Suspend Personal Research

There are days in the life of a person who has ME/CFS/CFIDS, one becomes over-sensitized by seemingly everything:  noise, light, information, surroundings, and clothing.  Fibromyalgia patients have the same problems.  My doctor said I have both, but really I wonder if it is one neurological disease that affects many parts of my body.

Tuesday, March 26, 2013

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.

Thursday, March 21, 2013

What Happens in the Brain of a Fibromyalgia Patient

Last night, I saw a video that was shocking, but it was a vindication for anyone that has ever been told Fibromyalgia is "all in your head."  Guess what!  It is in your head, but not as in being a hypochondriac. 

Now, I am only telling you the first part of what I understand.  Patrick B. Wood, M.D.  is the person that can explain what is going on in our brains.  I am so excited to have been introduced to the work he is doing.  I am giving you a link to the first video I saw of him explaining what goes on in the brain of someone who has Fibromyalgia.  I am looking forward to seeing the rest.

Thursday, March 14, 2013

Weak Muscles? Or Just A Feeling?

Despite the fog that eventually surrounds  my brain after reading reports on medical research concerning muscle weakness in Chronic Fatigue Syndrome, I have come away with a couple of ideas concerning muscle weakness.

First of all there are different types of muscle weakness: true and perceived.  What I was thinking about today is how much muscle weakness in Chronic Fatigue Syndrome is actual physical weakness and how much is perceived by our brain to be weakness.  I don't know about you, but nobody has actually tested my muscle strength in different situations or during a flare-up.  I may have pushed on the doctor's hand or something as she pushed back, but I don't remember.  One thing I do know is I have never been hooked up to any monitors or any devices that would empirically compile evidence for actual muscle strength.  The only thing I have to go by is how I feel.

However, after leaving the house for the first time in two months, I am convinced that my muscle strength is definitely affected after this last flare-up.  All I did was go to the hair salon and walk around the corner to a small antique mall.  But it was hard:  I got very shaky the more I walked about, and then I began to lightly perspire, and I felt quite pale.  I was glad I could make it back to the car, and I live in a small town.  So it did not take long to get home.

Have you had similar experiences?  Join me on facebook, so we can talk about it:  


Monday, March 11, 2013

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.


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Friday, March 8, 2013

Getting Up Again

My illness has left me depleted and frustrated many times; and as the clutter begins to take over again, I wonder what my solution will be.  You see, I am not ready to give in and give up.  Are you?  Do you want to be stuck in a messy house that preys on your mind and spirit?  I know I don't.  I don't want to feel trapped by my clutter.

Therefore, I am coming up with a public experiment;  and, I would like you to join me if you have a chronic illness that impedes you in the action of keeping house or of leaving the house.   A couple of days ago, I felt sad, because I am so very tired of a messy house and a messy me.  At least, I feel messy.  I have not been able to keep up the FlyLady system.  Her system is wonderful, if you are well enough to clean.

The past month and a half, I have not been well, but I have been  able to make myself throw in a load of laundry or clean the toilet.  I have cooked a few meals;  but most of the time, I have sat in my recliner or I have been lying down in the bed.  I have not gone anywhere, because I have not had the energy.  I didn't even go to see the doctor.  Have you ever considered how crazy it is a sick person has to sit in a waiting room -- a person that needs to be in bed.  I still remember when the doctor came to our house -- when I was a child.

I have been praying, asking for help in this area;  and, I have started a Facebook Page dedicated to creative decluttering.  When you're sick, you have to be creative on those days you feel like you cannot possibly get started.  I will not be writing about decluttering here, because I felt I needed to share it with all who are clutter impaired,.  My first blog post on this subject is Deborah Lynne's Inspirations, Decluttering Encouragement.  The second one is Conquering the Clutter Monster.

My regular readers know that I struggle just like they do.  Perhaps, some readers have things more together than I do.  However, I know I am here to encourage you, we can get up again after we fall down.  Sometimes, we think we are ready to give up:  it seems our hope has left us.  We reach out to God with heartfelt prayers, and He gives us strength to go on -- something clicks.  My prayer is that something helps you to get up and keep on going will click, that your joy , peace, and will to go on will be a palpable thing to you.  If you have fallen, I pray you will be able to get up again, taking baby steps to a life that feels less topsy-turvy and more balanced.

Monday, March 4, 2013

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.

Saturday, March 2, 2013

Is Chronic Fatigue Syndrome/ME Different After Age 50?

You need to read this, especially if you were 50 or older when you got sick with CFS/ME.  And if you were a little bit younger, read it too;  because if you are like me, you are not sure exactly how old you were before Chronic Fatigue Syndrome hit.  You just knew, that your illness had gotten unbearable. 

Part 1
Do you ever read an article and comments that seem so familiar, and they hit so close to home, you have an emotional response to what you read?  That happened to me today;  therefore, I have to share with you, because I admit to feeling disappointed at how my illness was misdiagnosed by medical doctors.

First of all, I think most MD's mean well.  They want you or me to feel better, but they only have a modicum of information.  Maybe, the patient doesn't say enough;  or perhaps, it is just too hard for them to believe someone that looks younger than his/her age and looks healthy could be sick with an incurable, unsupported (by all their training) disease.  So what, if the different body systems they test are in the low normal range--this couldn't affect a person so very much?  Therefore, it must be depression. Depression affects motivation and a person can feel fatigued, so send the patient to a psychiatrist. (Please know, that I am not trying to insult physicians, but that is what it seems like in my experience.  Sometimes,  I think I should have a fever or something when I go to the doctor, something the doctor can see.) 

So the patient, me or you, goes to a psychiatrist and a psychotherapist, as well as taking an anti-depressant and a drug for anxiety.  The patient feels better, but is not well.  Therefore, the doctor decides you cannot handle stress and should not work. 

However, there was a defining traumatic event in my life which I would rather keep private, that could have triggered a depressive episode (what it was is not necessary to know - we all have events that are different): there was the Fibromyalgia I had for years, the constant stress from a job that affected the entire family, serious viruses caught because my immune system was unable to resist them, the fight to get healthy again:  and then, there was more stress from dealing with family illness and subsequent deaths, and another serious illness and menopause.  Maybe these things contributed to the onset of Chronic Fatigue Syndrome.

Part 2
Basically, the above is a synopsis of my experience up to the point I knew something was wrong with me other than depression. I collapsed one day with such fatigue, I could not possibly go on.  Naturally, I was depressed and felt I could stand no more.  So what happened -- I was put in the hospital for 48 hours and told to go to a psychiatrist.

By then, I knew that was a waste of time, because I had already been down that road.   Also, my insurance would not pay for it.  I felt horrible, like I had influenza for months.  I could not function normally;  therefore, I quit looking for psychological answers;  and after much research, I found From Fatigued to Fantastic by Jacob Teitelbaum.  As I read his book, I saw myself.  I could hardly believe I was reading about almost every symptom I had experienced, and I had never been treated for Fibromyalgia or Chronic Fatigue Syndrome.  What an eye opener! (Before the depression,  I had a doctor that thought I had myofascial syndrome or fibromyalgia, but he never treated it.)

Finally, I went to a clinic that specialized in FM and CFS.  Each visit was very expensive, and it took most of our savings.  Insurance only paid for parts of the treatment, all the rest was out of pocket.  However, my husband wanted me to have help, and we took the one way, 3 hour trip to the clinic.  Every jiggle of the car was agony.  I hurt from the top of my head to the tip of my toes.  To make a long story short, going to the Fibromyalgia clinic made a difference.  Even though I am not well, I am in far less pain and have more energy than I had then.  At that time I had nada, zero, zilch:  I could hardly bathe myself.   I  have flare-ups, but I know things to do that help;  and, I have learned to be patient during those times, rather than anxious.

Part 3
The thing that I want to stress here is age.  I first began experiencing re-occuring fatigue in my mid-forties;  however then, I was able to get back some of my former activities, including tennis, swimming, working out with weights, and walking. However, I still struggled with depression, so they kept upping the dosage of my anti-depressant.  Every time the fatigue hit, I thought it was lack of motivation.  I even began to think I might be bi-polar.  Who wouldn't after all those ups and downs?

My huge "breakdown" occurred when I was fifty;  and, I now know why I felt like I could not go on with life as it was.  It was because I was very ill.  My whole body was breaking down;  however, I didn't have cancer or mental illness, I had Chronic Fatigue Syndrome and Fibromyalgia.  I am not going into the details of the abnormalities found in my blood tests, because I don't think there is anyone with FM and CFS that have exactly the same results.  However, I can tell you I followed my new doctor's orders and I got better.  With medication that helped with nerve pain, medication for hormones that were not in normal range, and supplements, I began to feel better. 

Guess what!  After I had been going to the FM clinic for several months, my depression disappeared.  One day, I realized I had not been depressed for several weeks.  I actually felt happy!  

The whole point is I believe the article I read today is correct.  The cases of chronic fatigue syndrome beginning after age fifty are different from those that begin earlier in life (Young Vs. Old: Different Type of Chronic Fatigue Syndrome, Adrienne Dellwo).  I think around age forty -five and up might be the onset for some age-related cases, and I believe there are probably many undiagnosed people, who have CFS.
I haven't given up hope, that one day I might find a way to minimize flare-ups.  However, I think a more realistic scenario is to admit I have an illness that will not go away without a miracle and to know I can have a happy life though ill.  I think finding help was a God-thing: it was an answer.  

Finally, f I had not been sick for so long, I might not be writing this blog today.  I have learned to live one day at a time and to be happy in that.    

May God bless you all,