My every day

How I am today… an example of what my everyday is like:

 

I wake up in pain all over the body. On a scale of 1-10, I usually wake up usually between a 5/10 to 6/10 on the pain scale. Legs are the worst as they have additional types of pain. My all over pain feels like acid is running through my veins instead of blood. An intense burning, somewhat tingly feeling. My body is slow and very stiff. My legs are tremendously painful. Besides the feeling of burning acid, my hamstrings/glutes and portions of my quads feel like they’ve been ripped apart. Sort of like I’ve had an intense workout that had gone horribly wrong.

I sit up and try to get my body to move. I take my time to breathe, gently stretch a little if possible. I wait a short while for my eyes to start focusing and for the light-headed feelings to subside a bit. As soon as I feel I can stand, I get out of bed. I must get used to whatever intensity of sensations/pains/limitations each day brings before I get out of bed. This is roughly a 10 min process each morning, but important. The thing about pain is you MUST get to know it. Become friends with it. If you are to overcome it, you must get to know it and learn how to live in harmony with it. It is your only true option. This is part of the mental game…

As I try to start to move, I notice that my limbs are very heavy. Full of pain, aches, stiffness and other indescribable sensations… but also heavy. As if I’ve been dipped in lead.
 

During these last 3.5 years, I’ve learned how to dig deeper than I’ve ever imagined possible. I’ve learned how to routinely put forth an extraordinary amount of effort to do the things I’ve always taken for granted. Small amounts of movement over short distances included.

 

For many reasons that I hope to expand upon soon, I refuse to let it show. I cannot hide it all, but I try to hide as much as I can. I will not let my Son see me in pain or let him see my weakness. Someday I will explain this to him. But for now, I want him to have as much joy as he can without the sadness of my struggle. If this does take my life, I do not want him to remember his Daddy this way. He will remember his Daddy as intensely loving and strong which I believe is immensely important for a boy to know…

 
By the time I start my trek to the living room, it’s usually roughly 6am.
 

My movements not only take tremendous effort, but also heavy concentration. No longer is movement or walking a mindless subconscious convenience. It has become somewhat easier though, as in the beginning it was nearly impossible for me to move.

 
I make my way to the living room where Aedan and Nikki are and I sit down on the couch with them. Aedan climbs onto my lap for some cuddle time. I sit there with him, soaking up every second I can. Aedan is the fuel of my Soul… But I cannot sit for long.

 

Sitting, laying down and/or resting dramatically increases certain types of pain. Acid burning, cramping, etc etc. Also, my eyes and brain get tired easily. So attempting to field a few of his questions or participating in any conversation with him causes my brain to get tired and slow(er). Between his movement, the sounds and sight of the cartoons, etc., my eyes get tired fast as well. My vision starts to blur (or blur more), my mind starts feeling softer/slower. And I start to fade away it seems.

 

I get up and go to a quiet and dark room of the house. And I just sit… I sit peacefully and let this ‘thing’ take it’s course on me like I have for 3.5 years.

After some time, maybe an hour or two, I make my way to the other side of the house to where they (Nikki and Aedan) are playing. I will walk into the playroom, trying to hide all pain and difficulties that I can. I try to make small talk with him… “Hey, whatcha making there buddy” I’d ask. I smile as he starts to explain, although I can rarely process whatever his answer was.

I stay until my brain/eyes start to worsen again, most often that process is less than 2 mins. I then give him a bunch of kisses on his head, and start making my way back to the room that is the darkest and quietest. On good days, I can sometimes sit with them a bit longer before my body/brain/eyes become tired and overwhelmed.

 

Again I trek to my hiding spot where I just fade away. I try hard to keep my mind as active as I can, which usually means I find something to stare at and I study it with all the relaxed effort I can. Sometimes it’s a tree – I stare at the design of the branches, the placement of the leaves… I listen to the very soft sounds the leaves make as the wind blows, making a concert in my of all the sounds I hear. Like a symphony that God is playing just for me at that very moment…

Once I feel I’ve rested my mind, eyes and body just enough to where I can re-appear for a few short moments without letting it all show, the cycle then repeats.

 



I am able to spend a few short mins with my son at a time typically. Some days more, many days it’s less. I am unable to play with him or go anywhere with my Family. I spend 85% or more of my day secluded in quiet darkness, living solely for those very few but very precious moments with my Son.

 



I am careful to time my resting seclusion so that I can save up some energy and eyesight to do my Glutathione IV’s. Usually around noon I begin to prep my Glutathione. Shortly thereafter, I find myself at the dining room table sticking a needle in my vein and slowly pushing my ‘spinach’ as I call it. As if I’m on Auto-Pilot. Something that’s hard to do when your vision is blurry and doubled and your hands are shaky and tremble. But I do it because I must survive. And I am still alone in this fight.

 

Fact: I am terrified of needles. Always have been. It’s amazing what each and every one of us is truly capable of when properly motivated.

 

Auto-Pilot: One of the issues I have is perceptual. It literally feels like I’m living in a movie or a dream. I feel like a mindless robot, going thru the motions of life. And it seems as if I have very little ability to direct my actions like I once did. I am fully aware of reality, but it feels as if I’m 3^rd person view watching the movie of my life. Depending on the intensity of this issue (varies), I have a very difficult time communication my conscious thoughts or interacting with the world around me in any normal way. This issue intensifies with the symptoms and has been substantially more debilitating than it is now. That said, this still affects me greatly. I will have to explain this element more at another time as this brief bit does not explain it well I feel…

 

By this time, Aedan is off to Pre-School. So the house is quiet between 12:30 and 16:30, which helps a lot in keeping me from sliding further down the spiral.
 

Once home, Nikki prepares his dinner and afterwards he will climb onto Daddy’s lap for more cuddle time as we wind down for bed. Aedan goes to bed at 18:00 like clockwork. He pretty much always has, so we are very lucky in that respect.

I struggle and muster all I have left (physically, mentally and visually) in order to walk with him down the hall to his room. No matter how bad of a day it’s been, no matter the levels of pain or even when I’m short of breath and my heart hurts (which has been nearly every day)… I still go and tuck him in. I will lay next to him and sing him his favorite songs (albeit very very slowly so I can catch my breath and avoid more heart pain) and I watch as he drifts off to sleep. Nikki will help me up and we leave his room.

 

By the time Aedan is asleep, I have already spent whatever energy/ability I have and I begin to succumb to the will of my body. My brain, my eyes, my body as a whole… all exhausted in ways that go SO far beyond “boo-hoo I’m tired”. Functioning is minimal. Typically, I’ve already ‘Hit the Wall’ by this point. And for the rest of the evening I simply exist. Unable to prepare food for myself as my body, mind and eyes have become too tired – I become even more easily confused than I had been throughout the day. Not to mention that my body is far beyond exhausted and I am far weaker than I was when I woke up.

 

Hitting the Wall: This is what I call it when I’ve exhausted whatever basic energy my body had that day. While each day can be different, it always takes very little to get to this point. Once I’ve hit the wall, all the pain, weakness and functional issues become substantially worse than my baseline for that particular day. I do not recover from this with rest. Generally, once I’ve lowered my baseline it will stay that way for months. This is again one of those things I will have to expand upon when more mental ability frees up for me.

 
I am nearly entirely dependent on Nikki to prepare my meals and remind/force me to eat. Without her now constant care, I would not eat, take my many vitamins/supplements, have clean clothes, etc etc.

 

Physically, I am very weak and fragile. My muscles tire quickly well past the point of exhaustion. Often, simple tasks wear me out – like opening cans of tomato sauce. If I push my body too hard, immediately the searing pain of acid rushes over my entire body – face included. I start to feel as if I have tremors. Simply raising my arms becomes even more difficult. Walking with my head high and hiding the difficulties and pain becomes almost impossible.