Sunday, August 25, 2013

Let's get this thing going!


I am doing it, I am going to blog.  Why, because I want to.  Will anyone read it?  I have no idea. So, why do it?   Because I have to many thoughts jumbled in my head and I just feel like setting them free.  So, what will this be about? Knowing me, it will be quite random just like the aforementioned thoughts... For today I will write about my experience with how little is known about chronic illness unless you're living with it, because today it's whats in my jumbled head.  This was going to be a Facebook status but there was just to many things that came to mind to fit plus I truly like for my Facebook to be happy filled with cute kitties and love of friends and family so thus the blog
~Just Simply Liz~ was born today!

A day or two ago I was talking to someone that had seen my post on Facebook about working around my home and how good I felt.  I didn't think much of it until today.  I don't feel very well today and I came across this same person who said this.  "Oh, you're sick again...  I thought you were doing better, I thought you were over all that stuff".  
When I gained my composure and overcame my urge to not punch him in the face which would have only hurt my hands more, I explained my illness like this. 

I have Fibromyalgia, Systemic Lupus and Rheumatoid Arthritis all three considered chronic illnesses of which there is no cure and in many ways invisible upon appearance.  I think that is why it can be so hard to understand for those afflicted and so frustrating for those of us who are.  I don't always "look" sick so it's easy for some to forget that I am.  My life has now become a big surprise that changes daily and sometimes even during the course of the day.  What do I mean by a big surprise?  I will explain.

There is always some type of pain in my body, yes always.  The surprise is how much and how badly is it going to affect me.  It may be just the small amount of pain that I can get out and function, have fun or go to work without to much trouble.  That's a great day!   Or the surprise maybe the day where the pain is more demanding, my head is fuzzy, I have a fever and feel like the mixture of a hangover and the beginning of the flu all at the same time.  One of those days where you would like to stay curled up in bed but you know you can't because life must go on.  This type of day is frequent for me and is usually the day that I make it through work or whatever things I have to do but cancel out on the fun things I had planned to do.  Then there are the bad surprise days.  On these days, there is no pushing through the pain the brain fog and myriad of other symptoms that I have awoken to or have crept upon me throughout the day like a stalker.  These are the days that will be spent totally in bed needing help with the simplest of routine things, like getting up to walk to the bathroom.  This last type of day just plain sucks.  I am a positive person by nature and therefore I can (usually) be thankful that my illnesses are mild in comparison to others.  We all have our own battles and I do my very best to remember that.

So, no I'm not over all of this and unless a cure is found I will never be.  I hope I helped him to understand a little more about chronic illness and I hope that maybe someone else will come across this and learn from it too.

~just simply liz~

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