I find that trying to provide a description that covers my every day is like trying to throw spaghetti at a moving target. I’m never well, but the severity of my weakness, symptoms and difficulties varies slightly according to what I call my baseline. My baseline – the average severity of my weakness, pain and symptoms – is fragile (See “What Makes it Worse-Better“).
My baseline is lowered significantly if I get cold, get sick, get stressed or angry (See “Fragile – Handle with Care“). It also depends on whether or not I’ve been able to remember or afford my treatment routine, and especially if I push myself too far physically, mentally and/or visually. This means that the further I exhaust my energy stores, the more intense my issues become and some of my most energy dependent organs and systems – brain, eyes, heart, muscles – suffer (further) malfunction. Recovery to baseline after I “hit the wall” can take weeks or months. It’s like Chinese finger-cuffs. The harder I fight back, the harder my fight becomes.
With mitochondrial dysfunction, I’m like a defective battery that discharges too fast and doesn’t recharge correctly. My batteries do not recharge with rest as a normal body does. Every day I wake up with an unpredictable and finite amount of energy that I must budget very carefully. I have very little stamina and small tasks or movement in general takes an extraordinary amount of effort. My body is very heavy and gets heavier as my batteries drain. Every day I am weak and unless I manage my energy budget well I quickly become frail and more easily confused.
Generally I will get small, short bursts of energy earlier in the day. Even on my best days, once I pass the unpredictable and invisible threshold of available cellular energy, I “hit the wall” and it quickly becomes a nightmare that I simply cannot describe. On an average day, this can sometimes be something as simple as trying to mop the floor. Once this happens, I need the world to stop immediately, and I need to completely eliminate all energy expenditures – physically, visually and mentally. Any energy spent after this point severely increases the intensity of pain and symptoms, it becomes a very slippery slope downward. The pain is intense and unlike anything I’ve ever felt as a healthy man- this is pain not of this earth. I tried my best to describe some of the pain here – Please see “PAIN, Sheer Determination to LIVE and the Power of the Human Spirit:”
The description below is a good representation of what my days are 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 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 also feel very heavy. As if I’ve been dipped in lead.
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 slower. Between his movement, the sounds and sight of the cartoons, etc., my eyes get tired fast. My vision becomes blurrier, 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’ run its course on me.
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 5 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 moments at a time with my son. Some days more, many days it’s less. I am unable go on family outings to the museum or zoo. I spend 85% or more of my day secluded in quiet darkness, living solely for those very few but very precious moments.
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’- alluding to the old cartoon “Popeye the Sailorman”- as if I’m on Auto-Pilot. This is 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.
When Aedan is at school, the house is quiet- which helps a lot in keeping me from sliding further down the spiral.
Later, Nikki prepares dinner and afterwards Aedan will climb onto Daddy’s lap for more cuddle time as we wind down for bed. Aedan goes to bed at 19:00 like clockwork. He pretty much always has, so we are very lucky in that respect.
I struggle to muster all I have left 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. And for the rest of the evening I simply exist.
I am almost entirely dependent on Nikki to facilitate the world around me. Without her now constant care I would be completely lost. I would not eat, take my many vitamins/supplements, have clean clothes, etc etc.
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.
Although, I try not to let it show, I cannot hide it all. I will not let my son see me in pain or let him see my weakness. 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…