Just Breathe

February 16th, Salt Lake City 

I would if I could. I mean, I am breathing, but not like I want to or like I did in the good old days. 

Lately, I have been pondering reality. What does reality mean? Webster (1828) says "1)Actual being or existence of any thing; truth; fact; in distinction from mere appearance. 2)Something intrinsically important, not merely matter of show..." 

'Not merely matter of show'... My last illness related post was written to help fellow sufferers be heard - to have a voice. This post - is on the reality of it all. Our reality is very different from you who call yourselves "normal" or "healthy". What makes it even more difficult to live in this reality is... it is a new reality, a new normal. We remember how we felt before. We remember feeling good. The rug was taken out from under us. Our lives are radically different that they were a week ago, a month ago, or several years ago. 


We can't fake it. Many people can feel poorly and make sure everyone around them has no idea. Many people act like nothing is wrong, everything is happy and joyful. Yes, there are times "we" can or have to do that. But, it can only last for so long. We need to be honest with ourselves and honest with those around us. Personally, I would rather have honesty than being fake. 

Let's be honest. It is hell. There, I said it. It's painful, scary, crazy frustrating. There are tears, our souls are in mourning....times of utter despair. 

We say very little - not wanting people to think we are complaining, ungrateful, or that we sit at home all day angry and pouting like selfish brats. We smile, we do our best to stand, walk, eat, live. We are grateful....very grateful that we are alive and learning. We do not complain. We live through the pain and frightening days and nights - rejoicing for another chance to try again the next day.  

But, there are moments where we are scared, sad, and yes, even a little angry. We need to express. We have emotions - lots of them. Our lives as we knew them were taken away. Many of us - our homes, belongings, memories, abilities, jobs, and even hobbies were taken away, lost, or put on hold. 

Personally, it is painful to look back at my last two years. Yes, I had moments of "normalness". But my life changed. I lost many things - emotionally, physically, mentally.  I have a new normal to get use to - a new normal that I do not like. 

I can not speak for all of "us" in what our realities look like individually....personally. But, I can speak for myself. I only speak for myself to encourage others to find their voices. To give encouragement. To help be understood. 

My reality (a small glimpse) - I lost some of my brain power, my energy, my hobbies are on hold. I can not work, I can barely drive, there are days where I have a terrible time cooking for myself (when Chris is away), days of only being able to sit or lay down. Days of having to choose one activity over another - at times it includes cooking or doing laundry or even just getting out of bed.  Cleaning my apartment, something I would love love love to do because I love clean living spaces...is currently really difficult. I cleaned the bathroom on my own for the first time the other week. Vacuumed once. Dusted twice. That's it. Chris does what he can when he is home. There are days where I can not take a deep breath, resulting in being light headed and can not do anything active. My list of foods is slowly becoming more and more limited. I am reacting to everything and everywhere. The days when Chris is on a trip - I am alone. When I am alone and have a flare up - I get scared.  I lay awake at night - body totally exhausted and mind over active, think of ideas and plans that there is no way I could do right now. There is pain - physically and emotionally.  We have joyful moments, we make a big deal over even the small victories. Chris and I are determined to remain positive, but not ignore reality. We plan outings and sometimes find they have to be cut short because I reacted to the building or someone's clothing.  There are times where I cry out in frustration. We are scared. We do not know how we are going to afford food next month or basic things.Chris's work is going through a transition time with planes. The next three months are going to be super tight and there are lots of unknowns. But we live, trust, and love. There are times when Chris and I just have to laugh at ourselves. It's not ideal, not what a newly married couple should endure, but, it's our life - our reality. 

A friend shared this story with me - The Spoon Theory.  This is a wonderful glimpse of so many of our realities. We don't want sympathy - we don't need it either. We need empathy. We need to be heard. We need to be loved. We need to be understood. This video is a great illustration of the difference between sympathy and empathy. 

Chris and I had a great talk the other week - wish I would have recorded it. We established that I/We don't want sympathy - not even for the loss of our first baby. I want to be understood and listened to. I want to live.  We need help - practically. Not sympathy. Our reality is real - we live it every day. 

Our (myself and fellow chronic illness sufferers) reality may not be your reality. But that does not mean we are less of a person. We are sick, but we are strong. We are fighters. We are aware, We love, listen, learn, feel. We feel. Do you?