What if all the ‘tricks’ you know just don’t work?

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.


Recorded scrap of paper – 04 July 2014

I looked forward to this for weeks. I rarely get to leave the house, and in order to be able to go with my family on the 4th I saved up all of my energy for several days. I do very little as it is but this meant I couldn’t spend any energy – I didn’t try to pick up my son, take a shower, etc. – for days. I also saved up what little Glutathione I had on hand and did injections for the days leading up to this, and also right before we left. I stayed in bed to conserve energy… and this is still how it turned out. 

7/4/2014  9:58PM

It’s the 4th of July and we, uh, drove – not too far away up in Longmont and we were in the parking lot at Target, watching the fireworks. And um, the parking lot was full. Almost everyone in the parking lot was tailgating so-to-speak. And um – (Oww, my eyes) … Um… it didn’t seem so bad when I was watching the Fireworks, but I went to go try and drive home I had a real hard time seeing. Um I mean, I could drive straight, I could see enough to make out where I was – I mean, I was safe – I couldn’t see street signs. Everything was not just blurry… I could… when I got closer to the street sign then I could make it out for that split second and then it would be blurry again, and then it would be … um, I mean not totally blurry – it’s hard to describe. But my eyes. They even hurt. Not badly, but enough that it – I mean it hurts. They don’t feel good at all.

Even when I close my eyes I feel like everything is just moving. At night – uh, there was so much glare. I was driving down darker roads and the street signs are bright (and lit from the inside). With better eyes it would have been very easy. But my eyes just got real tired and it got real bad. And right now its real bad, there’s no way I could read a book. I cant make out things. Um… Everything seems not so much blurry… I mean uh, kinda blurry… but definitely doubled.  And it’s very straining on my eyes. So its just a big contrast of being out vs. being home. There’s nothing worse about today, this is just what happens. I uh, I just normally don’t leave the house (especially at night) and it just got tested just now.  And for some reason my eyes are… really are bothering me. And it’s difficult to see very well. (sigh) This just sucks.

Second recording:

7/4/2014 10:03PM

Continuing the last recording about my eyes…

My sensitivity to light is significantly worse and I have to turn the lights out. I noticed quite a bit of relief – when I walked in from the Garage to that little hallway there and the light was on. That light really bothered my eyes. And when I turned the light out, it was very noticeable – ahhhhh. Bit of relief, you know. And um, I just walked into the dining room where Nikki and Aedan were – are – and uh, Nikki was reading the Series of Unfortunate Events book. Or one of those books. Chapter book – one of the ones I read a few pages to Aedan at night sometimes. I tried to make out the letters on it and I just couldn’t. They were doubled, and it was very straining to try and focus. Um, its hard to describe. I can make things out, but it takes a lot of strain. Especially I notice when I’m trying to read the smaller letters, that they’re doubled. Very slightly but they’re noticeably doubled. And uh, it’s very weird but very uncomfortable feeling. My eyes… they really bother me.