New Expectations

Suddenly having your health taken from you really makes you think (often by force…hospitals don’t leave you with much else).  Last week officially marked one month from when this hospital stay journey began, which made me sit and reflect yet again on my new normal.

I’ve learned quite a bit about CIDP since I suspected that was what was wrong (about 2 weeks before my actual diagnosis), and continue to educate myself daily.  One of the slightly scary things about CIDP is that so few doctors really have experience with it, and the prognosis of the illness is so varied from person to person that it’s really impossible to know exactly where I will be in a few months or years.  Some patients go on to make a complete recovery, while others are walker or wheelchair dependent for life.  There is also the real probability of relapse with CIDP (the C stands for chronic), which can be triggered by something simple like over working yourself.  

I don’t say all this to frighten anyone, but more to say that learning all this has forced me to adjust my expectations of what I am now able to do.  Even if I do make a complete recovery and learn to walk without any assistance and can finally pick up my son again (could someone please tell him to stop getting heavier?) :), I will still need to pace myself (doing laundry and going to lunch with a friend is probably too much), really listen to my body, and avoid stressful situations (stress is another relapse trigger).  Here at rehab, they have been very careful in therapy to push my body so it gets stronger, but not push me to the point of overdoing it and causing a relapse.  It’s a fine line.  Avoiding situations that could trigger a relapse of my CIDP has very real implications on how I live my life!  Time for some new expectations, and learning to be ok (and even happy with) my new normal.  The time frame for that potential full recovery is about a year, so I still have quite a ways to go, but I will never stop fighting!  I will be able to independently care for my son someday, I will walk again, and dance in the kitchen again!  I am a FIGHTER wearing the armor of God.

"YOU CAN’T STOP ME!" #116