This site is about me learning about. being me. Part of being me is learning to live with a chronic illness. Not to mention a few other fun miladies.  This is one of the hardest things I have ever had to do in my life. I have given birth twice. I have made the decision to not give birth once. I have had to start over from nothing. I had said good bye to loved ones on their last day on earth. I have kissed my 6 week old baby’s chest for last time without a scar as he was taken off to have open heart surgery.  But all of those things are… the past. But chronic illness is never in the past. It’s more like it makes you leave part of what you are in the past.

I was a dancer. I was a sword fighter. (yes really) I was physical. I was strong. I was a leader.  I was, I was I was.  I got diagnosed with Fibromyalsia shortly after my first son was born and then just recently with Degenerative Disk Disease and bi lateral sciatica. The DDD and sciatica could be fixed. One day. Maybe. But the Fibro is forever. Chronic they call it. A nice way of saying, live with it.  So the question becomes, How.  How do you live with something that is taking your life away? The easy answer is, you adapt. And that is the hardest thing I have ever had to do.  Maybe it’s just me. Maybe other people don’t struggle as much as I do. But this isn’t about them. This is about my journey in figuring out exactly how to “deal with it”.

I am doing all the things they tell you your supposed to do. Take it one day at a time. Get therapy. Make sure you have a support structure.  Learn adaptive skills. But to really live with it day by day is another matter. Sometimes I feel like the more work I do the worse it gets. The fact of the matter is, growth hurts.  Not just ow hurt. Screaming, crying, ripping,  heart wrenching, pain. The kind of pain that makes you cry for mercy and loose consciousness. Physically and mentally debilitating pain. Drowning in sorrow, anxiety, and fear every day. And every day trying to see through all that pain, to the growth. That growth is fragile. Little tiny sprouts in a stampede of giant beasts.  That little sprout is fed by the blood sweat and tears that come with all that hard work. I do believe that in the long run it is all worth it, but it doesn’t make the illness go away. It’s chronic. So no matter what you do, no matter how hard you work or don’t work its still there. This dark cloud hovering over everything. Every thing I do, I have to think about if I am going to have enough energy, what I might have to do the next day that I am going to need energy for.  Am I even going to physically be able to do it since i can’t walk or stand for more than a minute.

Then there is the anxiety and fear of thinking people are going to treat me weird or judge me. I am going to have to start using a wheel chair soon. What are people going to think? Are they going to think that because I can walk a little that i should not use a wheel chair. I struggle with my weight. Are people going to think i am only in a wheel chair because I am fat?  On and on the cycle goes. I am going to learn to break it….someday. Hey having the chair means I can go to Disney.

So I struggle. I cry. I reach out. I sleep…a lot. I go to therapy. My therapist is amazing by the way. He says I have come a long way.  I kinda gotta take his word for it right now.  I lean heavily on my Partner. And I keep trying.  And I write this blog. Why? So maybe some of you out there keep trying too.

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