Tuesday, October 8, 2013

Invisible Illness Sucks.

I'm still not sure how to speak, write, or feel about being sick.  So, with that in mind I give you blog post...
I've always been really awkward anyway so this will probably work out just fine.

I finally bit the bullet and went to see a Rheumatologist.  He was by far and away the best doctor I have seen so far.  He spent an entire hour with me.  He listened.  He asked questions.  He did a physical exam.  Oh yeah, and he LISTENED.  Many more tests were ordered, all of which came back completely fine.  Yay! and... really?  It's a confusing place to be.  Of course I'm happy I don't have a terminal illness!  Of course I'm glad I don't have an auto-immune disease! But you know what pisses me off?...  There is no way to fix this.  And something that pisses me off even more... there are people who do not believe it is a real condition.  Invisible illness sucks.

I can go from fine to bedridden within hours.  I can go from fine to feverish in seconds.  I can be super domestic goddess one day and super slacker forget everything mom the next.  I can be walking happily one minute and then HAVE to sit down the next.  Some days I can go miles on my bike.  Some days looking at my bike makes me need a nap.  Some days I can wear whatever I want.  Some days my favorite shirt feels like it is flaying the flesh from my body.  My thoughts derail mid-sentence.  I am tired all the time.  Unless it is bedtime in which case I am wide awake.

I have but one request:  Please do not offer me unsolicited medical advice.  If you have heard of it I'm going to go out on a limb here and say that I have known about it for a while.  There are many networks of people who are living this and we all work together to stay informed of research and our options.  Also, you are not my doctor... unless my doctor happens to be reading this.

If you want to help, the best thing you can do is listen.  I have days when all I want to do is complain.  I complain because I hurt.  Hurting sucks.  Also, I still like to do things.  I might not be able to do super fun active things, and I might have to leave early, and I might have to cancel at the last minute, but I still like to do things.

If you would like some sort of understanding of what it is like to live with chronic pain:  Get a clothespin.  Put the clothespin on the end of your finger and go about your day.  How far did you get?  Now imagine never being able to take the clothespin off.  Ouch.  Am I right?  I can't take credit for this analogy but it gets the job done.

I guess I'm at the point where I'm ready to work through being mad about being sick and move forward.  This is the point where when you ask me how I'm doing I'm going to be honest.

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