This morning, I woke at about 4:30am and the pain made it so I couldn’t stay in bed, much less sleep. This is typical and is on top of all the other difficulties.I cope well, but it gets old sometimes and there are times when it takes every ‘trick’ know to get myself into a better state. This was one of those mornings.

I was able to get myself to accept the day ahead and my eyes began to focus a bit – which usually takes an hour or so after I wake up. Rock on I thought.

But then something happened, I found myself in a situation that I didn’t understand. Which can happen easily, no matter how easy an issue or situation might be. It is a requirement that my world be slow, predictable, straight forward and simple. I tried so hard to understand and know what to say or do, but I just couldn’t follow what was happening. I used too much energy.

My available (cellular) energy is always low, but un-predictable from day to day. And its quite finite. Once I use what I was given that day, that’s it. It quickly becomes a physical and mental nightmare beyond words. So today I exhausted my available energy and I hit the wall. Hard. And as the day goes on, this will only get worse.

And it was barely 7am.

Today is one of the (thankfully) rare days where I couldn’t immediately squash my frustration over my situation. I live a life that could easily be overwhelmingly frustrating if I let it. I learned to deal with it very well, but its not a perfect science just yet.

I tried every ‘trick’ I know to help change my state. I tried the cologone trick – now I smell like I should be rocking a Mullett. I tried sitting in my quiet place, listening to calming music, etc. I even took an Epsom Salt bath with some essential oils. Didn’t help, I just couldn’t shake it off.

I say all this to add context to todays message. I don’t like to bitch, but I have to get some of this out so y’all understand a little.

My last line of defense isn’t so much a ‘trick’. But it works every time.

Some days just suck and are going to suck. Lets face it. But I feel its up to me to decde just how much I will let the aforementioned ‘suckage’ take away from my life. Today is one of those days where I just have to hang on tight to what and who I love and just know this too shall pass. Just hang on and know that while I won’t feel much different physically and my mental/visual abilities won’t improve too much in the near term, I will feel better inside. Maybe not now, or in an hour even. But I will. And sometimes, that is all you have to hang onto.

I refuse to let it ruin whatever is left of my day. I decided that I don’t give a rats ass how bad it is today, because I must live above it. If I am to live, I will not let this monster take anything more. Its taken my body, my eyes, my mind… it has made me miss out on so much of my life – and my Son’s life.

Over these last 5.5 years, I have learned to just let go. Grab onto your life with both hands and no matter how much you think it sucks, live it. Live it and refuse to let whatever troubles you steal any of your quality of life. It doesn’t have to, it only steals what we make available.

This all made more sense in my head and I’m not warpping this up well. So I hope you can find the value in this.

Let go and live for today. This too shall pass.

With love for you all.

Michael