Sunday, July 29, 2012

Living with Chronic Illness: Part One

Chapter One:  Just when I thought my world was at an end, God came and gave me a new beginning

Until seven years ago, I had a private practice where I did counseling. I felt I had finally reached my goal and was enjoying helping people.  But, alas it was not meant to last. For many years I had felt that something was not quite right with me, but the doctors always just told me to lose weight or I was depressed. I finally came to the point where I had to close my practice.  The five back surgeries I had endured and the chronic fatigue had taken its toll. 

I finally found a doctor who discovered what was at the root of one of my major illnesses.  I was diagnosed with a rare disease called Primary Immune Deficiency (PID). It turns out that this is a genetic disease where the body cannot fight off certain infections. So I started the treatment that I will need to do for the rest of my life, and resolved myself to being unable to use my skills and talents anymore.  I concluded that my life as I knew it was over and it would now revolve around doctor visits, doing infusions, taking medications and virtually watching others live out their lives as I wished I could live mine.

But God in His kindness had other plans for me. One morning, I was prompted by the Holy Spirit to start a blog.  I began to look into it and quickly realized that I could share, online, not only what I had been doing in my counseling sessions, but the personal trials and struggles I had and would face in the future as one dealing with chronic illness and chronic pain. I was thrilled as I knew it could reach many people.  God restored a sense of purpose in my life and I was overjoyed.  This body, while giving me much grief and aggravation, would not hold me back from what the Lord wanted me to do. 

On days that I feel I can't write because I either hurt or feel so fatigued, He gives me the strength. He showed me that if I pace myself, take short breaks when needed, that I can accomplish what He wants me to do. He'll put ideas into my head on the rough days when I'm not doing well, so I keep a writing pad handy so I can make notes for the next time I can spend some time writing on the computer.  

To date, I have been able to do far more than I had ever hoped. At the beginning of dealing with my illness I felt like my work was over, but I now see that He had far greater plans for me, and through His strength and guidance I will continue to be used by Him to help others. God's ways are not always our ways...they are much better! God’s strength is best shown when we are weakest. So rejoice in your weakness. Allow it to remind you of how much you need God and watch God work in your life. Let God handle things you worry about, and all will be well.    

"But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me," (2 Corinthians 12:9).





Chapter Two: Where is God when you really need Him?

I have been having a very difficult week.  I've had three doctor appointments where they took many tubes of blood to test.  Then, on top of that, my optha-neurosurgeon says my eye pressure is too high and if the eye drops she gave me doesn't bring it down, I'll need eye surgery.  I've had a problem with increased spinal cord pressure for over 3 years now (maybe longer, who knows!) and it's caused both of my optic nerves to become very swollen.  Nobody has been able to find the cause of this increased spinal cord pressure, which is extremely frustrating.  

I left her office, with mixed feelings...I felt grateful that she is such a good doctor, but I was also really struggling with trying not to break down and start crying.  It just seems that it never ends, these unforeseen health issues that keep coming up.  I so wish I just go into "maintenance mode" and live with what I already have to deal with.  But, no, it seems like there's always some new possibility.  New problems possibly arise.  More testing and blood-work.  I already feel like a pincushion.  I feel that other than working on my blog and doing some chores around the house, that I live at doctors' offices or hospitals.  It gets so very, very disheartening. Maybe I should just set up a bed at my doctor's office and not bother coming home...at least it would save on gas!

 My husband recently visited his best friend, who's son had a birthday party and, again, I didn't go. I had to stay at home, as usual, because I just can't travel that far.  Life is passing me by.  The many things I wanted to do with my life, even the simplest thing like riding my bicycle, which has been hanging up on a hook in the garage for several years now,  feels like they are getting to be less of a possibility.  I often look up at my bicycle with a heavy sigh, wondering if I'll ever get to use it again.  Even the simplest things seem very difficult at times.  

 Pushing back the tears I wonder, what's going on God?  How much more am I supposed to deal with? Are you even there?  Do you even care?   After a couple of days of feeling sorry for myself...you know, the pity party where you're the only one that shows up...something happened that gave me a lot of comfort and reassurance.  God is so good...He knows when we need encouragement and is always ready to show us He DOES care and is concerned. 

My husband and I love living in the country.  One of our enjoyments is watching the herd of deer that live close by.  Each Spring, we watch and wait with anticipation to see the latest crop of fawns.  One Late  afternoon,  a couple of days after my doctor appointments,  my husband came in to tell me that there was a small fawn laying in the grass beside our driveway.  We were confused and worried, but at the same time we didn't want to touch it or move it.  So, we waited for its mom to return and retrieve her baby, but by bedtime the baby was still laying there, laying as low in the grass as was possible.



The next morning my husband went out to make sure the baby was gone, but the baby was still there! We were shocked. Where was the mother? Had she been hit by a car? Why had she not returned to retrieve her baby?  With worried minds, we went about our morning not sure what to do. 
 
As my husband was getting in his vehicle to go to work, suddenly the mother came out of the woods, quickly retrieved her baby, and they both returned back into the woods.  We then realized that she had been hiding in the woods the entire time, watching her baby, making sure nothing would harm it.  My husband later decided that she must have been moving her baby to a new location when he had brought out the mower the day before.  She had ran off, and her baby had known instinctively to lay low until mom came back, no matter how long it took. 
 
It was thrilling to see the pair united, but it also struck a chord deep within me.  It was a reminder to me of how my Father God watches over me, oftentimes from the shadows, and I don't even realize it. When I feel overwhelmed, as I have been lately, I know that He's standing by, concerned and ready to act, if necessary.  I felt a little ashamed that I had doubted God and I am now eating a piece of "humble pie", but with a large side order of renewed confidence in my Heavenly Father.

"For the eyes of the Lord range throughout the earth to strengthen those whose hearts are fully committed to Him” (2 Chronicles 16:9).  Don't worry or be afraid...God is always tenderly watching!


Chapter Three:  Can we live like "normal" people?


For many of us with chronic illness or pain we struggle trying to live what we consider as close to a normal life as possible, but there are many challenges and also roadblocks to achieving this goal.  One of the challenges we may have to deal with is doing something as simple as going to the store, or the big one...going on a vacation with family or friends.

One of the challenges I've faced for many years is not being able to go very far from my home due to my problems with traveling.  The most I can ride in a vehicle is about 45 minutes and then I have to make several stops to get out and walk around.  However, I've just returned from a wonderful vacation and I can't wait to tell you about it.  Warning:  I'm getting a little teary eyed already, so will try to keep it together as I share the wonderful respite from pain and illness that God blessed me with recently.

For a healthy person who plans a vacation the stress they tend to face are have they over-packed, will the plane be full of noisy people, what if the vacation doesn't live up to all their expectations? Will they return home disappointed, saying, "Never going there again!"   For us, however, it is a much more burdensome task.  What medications do I need to take?  Can I get a wheelchair at the airport so I can make my connecting flight?  Will the vacation really be a nice break or will I be hurting worse when I return home?  There are many, many more complications that we have to plan for that the healthy person usually never even considers.  And, thus, the anticipation of the vacation can become a stressor in of itself...we think, what if this, what if that....will our family or friends feel hindered by me during their time of wanting to have fun?  What will I need to do if I'm left alone and have to take care of myself while they're out?  All these questions and concerns can certainly cause one to just say forget the vacation, it's easier to just stay home where I know how things go.  But, friend, I'm here to tell you it is worth the extra work and effort because going makes you feel "normal" for a short time, and that is priceless.

We went to the beach.  Now I'm not usually a "beachy" person, but this beach was beautiful.  Palm trees growing down to the water's edge, the sound of the waves rolling in and crashing on the beach, as the pelicans flew overhead looking for fish to dive down and devour.  I couldn't help but feel that my Father God had arranged all of this just for me!  So many things had to fall in place just right for this to have worked out the way it did, and that made the vacation even more special to me.  As I sat there and watched families build sandcastles together, or couples walking along the water's edge together, I felt happier than I believe they did.  I was there because my Lord knew I so desperately needed to feel normal and to get away from my life that revolves around my pain and illness.  As I sat on the beach, I cried many times...not from pain (which was still there, of course), but from the gratefulness I felt in my heart.  I had to pretend I had sand in my eyes as others looked at me, wondering why I was crying.  No, it was not sand, but tears of happiness and gratitude.




If you can, take the chance and do something that will bring you joy, even if it takes a lot of planning.  I started planning and packing over a month ahead of leaving, because I knew I had to pace myself and really think things through.  Now I'm back home and I sit here, in pain as usual, but with a wonderful memory in my heart that I will ponder upon next time I'm stuck in bed.  The next time I'm laid up in my bed, my mind will take me back to those beautiful blue waters, I'll feel the balmy breezes and, most importantly, I'll know my Father God made it all possible.   My body may be laying there in pain, but my mind will be focused on the wonderful time I had... and that is something that neither pain or illness can take away from you!




Chapter Four:  Chronic illness and your  changing emotions

It's considered a normal part of life for our emotions to change.  Sometimes they change on a daily basis... for others they can change on an hourly basis, depending upon how their day goes.  For those of us having to deal with chronic illness, changing emotions are a whole different thing.  I know that if I wake up feeling better than the day before, then my mood is happier, but if I wake up feeling bad, then it has the potential of ruining the entire day.

Emotions are a powerful and wonderful thing.  They can bring us great joy and happiness.  They not only affect how we interact with our family and friends, but they even affect us when we are by ourselves.  God created us to feel.  Without emotions, we'd be unable to experience the vast range of things we are exposed to in our lives.  However, they also have the potential to become negative, especially for those dealing with chronic illness.  

When I was first diagnosed with my illness, I struggled with many emotions.  At first, there was happiness as I finally had an answer to what wrong with me and I felt vindicated that there WAS something wrong with me.   But then, on the heels of that, there was the realization that this was a  illness that would be with me for rest of my life, something that couldn't be cured with a pill or a surgery...that was when reality set in.  For years now, I've gone back and forth between being grateful for knowing what my illness is, to  being angry and frustrated at having it rule my body and completely change my life.  

On a daily basis, we who have a chronic illness have a choice to make.  How much are we going to let it affect our life,  and, ultimately spill over onto how our day goes.  I know my emotions have varied from  wanting to stay in bed and be left alone, to wishing I would just die.  At times when I feel I can do some things around the house, or maybe go to the store, I struggle with frustration because the smallest, simplest task can feel so overwhelming.  I never would have thought I'd be having the grocery store clerk help me take my shopping to my car...that's supposed to be a service for the elderly, not someone my age!  I've learned I have to swallow my pride and ask for help, otherwise my desire to be independent can mean I'll probably be in a lot of pain the next day. 

The other major feeling we can struggle with is guilt.  Our society is based on one of self-reliance and independence, but now we may find we can no longer live that way.   We have to ask for help, and for some, that is not an easy thing to do.  There have been times I've had to ask for help just to get to the bathroom, and that is not an easy thing to ask for.  I feel guilty because I cannot help myself to perform the most simplest of human needs.  Then there's those days when I'm just not up to driving and I have to ask for help to go to another one of my many doctor appointments...this is also guilt producing because I know I'm asking someone to alter their schedule to help me. 

Loss and sadness are often close companions.  It's been seven years now since I had to close my counseling practice, and when I think of all the hard work, time and effort it took me to open my office, I still feel a big sense of loss.  But then, if things had not have worked out this way, I wouldn't be doing this blog in the hopes of helping others. So I suppose it really does boil down to my attitude...how am I going to view my illness?...am I going to live with a sense of grief over what could have been, or am I going to try to make the best out of my situation and live my life the best way I can?  For me, I choose making the best of what I have.  If not, then I'm going to end up choosing a life of self-pity and anger, and those, my friend,  are hard taskmasters!



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