Demyelinated not Destroyed

One of the biggest problems of living with Chronic Inflammatory Demyelinating Polyneuropathy is having to deal with the uncertainty that it brings.  It’s hard to want to dream of the future or make plans when you don’t know how you’ll be doing from day to day.  I really believe that the uncertainty that surrounds CIDP is almost as crippling as the demyelination it causes.

While the neuropathy and demyelination affect you on a physical level, uncertainty hits you on an emotional one.  Emotional issues can be much more difficult to deal with than physical ones sometimes.  You can be having a bad day physically but if you’re in a good mood, it makes everything you’re dealing with seem okay somehow.  If you’re depressed or upset, it really doesn’t matter how good of a day you’re having neuropathy wise.  The day will seem bleak because you’re just not in a good enough frame of mine to appreciate it.

Right before I was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy, I was making plans to finally go back to college.  It had taken me years to decide what I wanted to get a degree in but I had finally settled on something.  I wanted to be a nurse practitioner or a midwife.  I was taking an online doula and childbirth educator course in an effort to eliminate whether or not I wanted to pursue being a midwife.  The online courses were fairly quick and cheap.  I didn’t want to pay all the money to enroll in a midwife course only to later find out it wasn’t the path I wanted to take.  I had found a local midwife that I could intern with as a doula and childbirth educator while watching how a midwife works.  I had just started my internship with her and was excited about the future.

For the first time in a long time, I had everything in my life in about as much order as I could get it.  I was still dealing with my various neuropathy symptoms on a daily basis but I had a good neurologist.  Every time I left an appointment with him, I felt like I had made great strides towards getting a diagnosis and treatment.  I had hope.  In spite of the demyelination I knew was occuring, the future looked bright.

Then I received a diagnosis of Chronic Inflammatory Demyelinating Polyneuropathy and all that changed.  Suddenly, my life was filled with turbulence again.  Everything had gotten thrown up in the air.  I’ve never been a talented juggler.  Instead of finding a way to juggle my hopes and dreams with the realities of a CIDP diagnosis and treatment, everything just hit the floor and scattered.  You would think I should be happy that I finally received a diagnosis after five years of searching, and I was… to an extent.  But sometimes the answers we receive aren’t always the ones we’re prepared or even willing to hear.

Looking back, I don’t think it was any one thing that sent me into a tailspin when I received my diagnosis of Chronic Inflammatory Demyelinating Polyneuropathy.  I wasn’t expecting to receive a diagnosis of CIDP the day I did.  I was scheduled for my regular six week check up with my neurologist.  He was monitoring me closely because of how much demyelination had to be occuring in me on a steady basis.  I was losing feeling, balance, strength and reflexes pretty steadily while having an increase in fatigue, tingling, muscle spasms, and muscle cramps.  Still, I was functioning fairly well and was able to do a lot.  I had no reason to believe my appointment would be any different than the numerous ones before it.

In my desperation to receive some relief between appointments, I had taken the steroid pack I was prescribed just in case I needed it.  The relief I received from that steroid pack is what clinched the diagnosis of Chronic Inflammatory Demyelinating Polyneuropathy in my neurologist’s mind.  Suddenly, I had a diagnosis and was being scheduled for a couple of tests to confirm it and IVIg treatment.

I was dazed as I left my neurologist’s office.  The day I had wanted for so long had finally come and now everything was moving so fast.  Any control I felt I had up until that point was taken from me.  My plans for the future had to be pushed aside as I suddenly had to make room in my life for treatment, more tests, and more appointments.

Around that same time, my Chronic Inflammatory Demyelinating Polyneuropathy began to cause problems in my legs.  Up until then, the majority of my problems revolved around my hands and arms.  Now I was dealing with numbness, tingling, and weakness in my legs.  This resulted in increased tripping and fatigue as I was having to work so much harder to be active.  I was losing my endurance, too.  I knew I was getting worse but there wasn’t anything I could do about it while I waited for treatment to begin.

Knowing my CIDP was getting worse led to depression.  It’s hard to be a 30 year old wife and mother who wants to be active in the lives of your husband and children but know you can’t because your body has decided to be its own worst enemy.  Due to my heat sensitivity, my symptoms would vary in severity almost daily.  Not knowing how well I was going to feel from day to day only made my Chronic Inflammatory Demyelination Polyneuropathy induced depression worse.

Thankfully, I managed to get my head on straight again, as it were.  Instead of focusing on all the things I couldn’t do, I focused on all the things I could do.  My plans to go back to college are on hold until I know how often I’ll be receiving IVIg treatment.  Becoming a doula also has to wait until then.  Doulas are on call 24/7 when their client’s due date nears.  Obviously, it would be awful if one of my clients went into labor while I was in the middle of receiving IVIg.  The five days of having an IV in my arm would prevent me from being able to help her during labor like I was contracted to do.

For now, I’m focusing on my writing.  Writing is something I have always enjoyed.  I like expressing my thoughts on paper and getting lost in my familiar land of daydreams as I create stories.  Since I’ve started writing in earnest again, I’ve discovered there are quite a few people that like to read my stories.  It makes me happy to know that others enjoy what I’ve written.  I’m also starting to get paid for my work, something before now I thought would only happen in my wildest dreams.

It took getting a diagnosis of Chronic Inflammatory Demyelinating Polyneuropathy for me to get back into a hobby I love and ultimately realize a childhood dream of mine.  The uncertainty of living with CIDP is still there.  It always will be.  I’ve just learned how to bend as my symptoms change instead of breaking.

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