Predictably Unpredictable

Predictably unpredictable is how I have been referring to RA lately.  It seems the only fitting descriptor I can find so far.  One year into this journey, it is the only certainty about this disease.  From everything I have been reading in social media, other patients questions and concerns, is that as much as everyone's R.A. is different, so is their day to day journey.  Day to day is the only way I have been getting through the year, sometimes hour by hour, even minute by minute at times .... I take nothing for granted about how good or bad I feel on any given day, because typically, IT WILL CHANGE!  Which is why I have to journal what is happening with me - so that I can report correct information to my rheumy.  My memory would be completely ineffective over the weeks in between visits.

Coming to terms with this change, I think is one of the most difficult adjustments to having a chronic illness.  "How To Be Sick" by Toni Bernhard helped alot and I'm due to re-read it.  Talk therapy helped me as well.  The only thing I know for sure is that I don't really feel like I know anything ... If I get the sniffles for example (really you could pick any ailment), is it a reaction to my biologic, am I actually getting a head cold, is it a new seasonal allergy?????  If I get a cold or the flu, will it turn into an infection?  Will I get bronchitis, pneumonia?  Will it land me in the hospital????  Which by the way is the last place you want to be when your immune system is suppressed.  Ironic that the one place we are not safe is in the hospital, around a bunch of sick people and infections!

For those of us with control issues, I think this could be the biggest hurdle to get over.  I make plans ... I don't necessarily keep them ... but I need to make them to feel like I have some semblance of a life.  Sometimes I force myself to keep them, sometimes I don't.  I preface any plan making with friends, that we will need to reassess the day of the plan, to see how I am feeling.   Before my diagnosis, I never did take my health for granted.  I was always very grateful, but this unreliable person that R.A. has turned me into is extremely frustrating to me.  When someone asks you how you are ... I feel an inner battle on how to answer.  If it is someone on my team, they get the straight goods truth.  Otherwise I have a fear of under emphasizing how I am because I now care about perception ..... I never did before ....

How are we suppose to psychologically deal with all these "unknowns".  Trying different treatment options, natural or western ... mystery infections, mystery side affects ... mystery pain, mystery bumps, bruises, rashes .... we shall reach out to our "community" and resign ourselves to the fact that we are PREDICTABLY UNPREDICTABLE.

The Imaginary Friend