Monday, March 31, 2014

Always Baby Steps?!

Image Courtesy of [wandee007]/

I know how it feels to be overwhelmed by a book that tells me how I can live my live better as a person with a chronic illness.  Often writers have many documented theories and examples, but I could not grasp these for my use.  I could barely remember anything I read.  Baby Steps, baby steps -- that is what I could finally grasp.  I actually visualized myself as a baby learning, and tried to remember how I learned as a small child.  Baby Steps, try them. ~ "Self-motivation, Toolkit for Success"

I made the above statement in 2012 after years of reading self-help books by the experts, which is not a bad thing;  in fact, I sometimes learned things that were helpful to me.  I wonder if you have found  that most of what you read in your own searching was usually lain aside;  because in dealing with chronic medical conditions and their ups and downs, trying to follow some advice seemed self-defeating or just plain impossible.  That is what happened to me.  Instead, I started using the things that did work for me, rather than seeing self-help books as the absolute answer and myself as a failure.   I incorporated what I could use into my life and threw the rest out.

 My odyssey in the self-help book realm probably changed more to pick and choose from late September, 2007 to some time in 2010.  I was desperate to feel better and to do more.   There was that drive within that said there must be a way to better deal with the fatigue of Chronic Fatigue Syndrome and Fibromyalgia.  I wanted to do more despite the bone-deep lethargy and pain imposed on me by illness.  I was at my worst then.  That is when I could barely bathe myself.  Even lifting my arms while sitting in a chair was difficult.  I was in constant pain.  My body seemed to have turned on me.  My brain could not focus for long;  however, I still searched books and the internet for answers in addition to the medical advice I had received from the physician that was treating me for Fibromyalgia and Chronic Fatigue Syndrome.  I was sure there must be a way to live better within the parameters I was experiencing.  

What I discovered as I was reading one book, that I now can only remember in a very dark fog, is there was absolutely no way I was going to be able to follow in the steps of this "transformed" author.  I don't even remember the name of the author or the name of the book.  However, I remember wryly chuckling as I read the book,  not because it was funny, but because it was sad this woman was telling me I could do all the things she did.  Understandably, my consumption of self-help books began to decline.

At the end of my rope in the I am going to fix me realm, I prayed.  What I saw in the answer to my earnest prayer was me growing from a baby into a toddler;  then as a child I gradually learned and experienced more, finally becoming an adult.  None of us start life as adults.  We have to crawl before we walk.  Our bodies have to develop muscle and stamina.  On the other hand, we lose the ability to function as healthy adults with CFS/ME and FMS:  but when we are not in a flare or relapse, we can often gain some ground with gradual introduction of activity.  My problem was how  to find a reliable, realistic way to pace myself during  the rehabilitation process.

The answer to my prayer was that God showed me a kinder, gentler approach to my problem.  As an adult, I wanted to do all the things I thought an adult was supposed to do.  However, that was not practical in my situation.  Therefore, I began to recall what I did and how I felt as a child;  and, I recalled how fun it was to play and learn at the same time.  I eased up on my expectations of what I should do, and began playing.  What I realized is play can be strengthening.  After all, a child plays house or pretends to be doing adult activities;  but in fact, he or she is learning and strengthening the muscles and mind.  He is growing up and developing habits. 

For my rehabilitation "therapy,"  I began with fishing, which was a little easier for me then, because we had a pond only a few yards from our back door.  I had to get dressed;  then, I walked to my chair by the pond and cast my fishing line in to the water.  It was so much better than always being in the house. This was something non-threatening, which I did when I was a child, that invigorated my mind, my spirit, and my body.  Of course, that was only part of the story, but it was a beginning for me to  feel better about my life, as well as a beginning to gain back some control.  Moreover, it was satisfying.

Another thing I found helpful was my habit of the month calendar.  I would choose one habit a month to work on;  then, I put a check or a sticker  on the calender when I was done.  Pretty stickers made me feel good, especially as I saw more of them on my calendar.  Eventually, I would have three to four habits on my calendar that I was working on during a month, because I would repeat the habit from the prior months and add one new one.  Any more than three or four habits on my monthly calender were too many.

Many people begin working on their habits and reorganizing their homes by using FlyLady's techniques, and following her 31 beginner's steps.  I tried FlyLady and I admire the fact she has helped many people with her methods, but I found the daily routines were too taxing for my energy levels.  Also, I was having to choose habits, which were quite basic, such as getting dressed or taking a bath.  Please understand this was not like the former, healthy me.  I was in bad shape:  I could barely walk to the bathroom.  For many months, I felt like I had the flu everyday, twenty-four hours a day.  I read somewhere that CFS and Fibromyalgia patients' often feel like someone who is suffering with cancer.  Funny that most people have compassion for cancer patients, yet CFS and FMS patients are often misunderstood, because they look well to other people.  Thus, we use the term "invisible illnesses"  as another descriptor of various chronic illnesses, which almost seem to be a type of modern plague.  Many people are ill, but they keep going;  until, they simply cannot.  Invisible illnesses can be painful, serious, and terribly complicated.  They are not trivial:  they are life-changing.

My suggestion for each of you is to consider what the first things are that you need to improve to find a level of living that is better for your peace of mind.  It's a matter of being realistic about what you are able to do;  yet, you do not have to give up the dream that you can improve areas of your life.  And, it usually takes many small steps to get there, but they are worth it.  Moreover, each baby step you take should be considered a victory, even if you have to repeat the same steps over because of the FMS/CFS/ME Cycle.  

This flow chart shows the basic steps  that seem to occur over a
period of days, weeks, or months in the life of many FMS/CFS/ME patients.
                                                                                     ~  D. Bolton
Among the problems I hear mentioned by most Fibromyalgia and Chronic Fatigue Syndrome patients is limited energy and pain.  The problem with limited energy is it becomes harder to do anything if all one does is sit or lie down in the bed.  Pain can become worse if one does too much;  however, if a person sits all day, it seems the muscles become stiff and weaker.  It is a fine balance, which can sometimes change overnight;  and, it is frustrating that the cycle starts all over again, going from feeling  okay to hardly being able to lift a finger. 

We, who fight chronic illnesses of all types, often walk a fine line to maintain balance in our lives.  From my viewpoint as a person who has Fibromyalgia and Chronic Fatigue Syndrome, as well as several overlapping illnesses, I find this cycle one of the most challenging parts of my life;   because, I lose whatever rhythm or routine I have established when I felt better.  It takes backbone to begin again, over and over, time after time.  However, every time I think I want to give up, I know that deep-down, I want to keep on trying to establish a routine I can stick to.  The wonderful thing is that I am finding there is usually something left from the work I did last time.  All is not lost.  Each time, once I get myself moving again, I find it is a bit like getting back on that bicycle or playing the piano.  Or fishing...  The skill is still there, and the muscle memory begins to take over.  Moreover, it doesn't have to be perfect.  If you cannot do an activity or finish an activity, you are a winner because you tried.  

So, take heart.  All is not lost if you are coming out of a relapse or flare.  And, if you are just starting the process of rehabilitating after being very sick for the first time, be kind and generous to yourself.  Celebrate the little things you are able to do.  It's not easy, but somehow many of us keep learning to walk, even when we have fallen and had to crawl for a while.  Baby steps.  Baby steps.  Baby steps.  Yes, they do work, over and over and over again...

Gentle Hugs, 


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It's always lovely hearing from you. xoxo, Deborah