A few weeks ago I posted this to Facebook. This is nowhere near a complete description of what I feel, but I think this is a pretty good summary. I haven’t had a single second of a single day without pain. Not to mention chest and heart pain, eye pain, joint pain, cramping, etc.
This doesn’t at all even address the functional difficulties I have nor does it at all describe the brutal fatigue that makes me unable to leave the house most days. I am hardly functional and heavily depend on Nikki to ensure I have at least some of what I need to continue living. And I would hardly call it ‘living’. I do nothing, literally nothing. If I actually attempt any activity most days (vacuuming, showering, anything) not only does the pain exponentially increase, so does the fatigue. And once I use whatever energy I have for the day – it’s over. And I need significantly more help to complete the day.
I don’t like talking about this stuff anymore – after almost 6 years I’m just over it. If I am going to continue living, I sure as hell won’t be complaining. All that does is make me more miserable. But I have to start getting some of this out or I’m going to lose my mind.
Like most things I write, this took me a long time. About an hour and a half. But I’m grateful that I have been able to start writing something. Writing is easier than communicating in real-time, but still not easy at all. My truth will be told, if its the last thing I do.
Facebook – 07 Sept 4:38am
PAIN, Sheer Determination to LIVE and the Power of the Human Spirit:
One of my Neurologists commented, during one of my EMG/NCV’s… “Wow, your ‘pain dial’ is broken”
It’s 3:20am and I can’t sleep. This isn’t a new issue, I haven’t slept much in nearly 6 years. I am in so much pain, layers. And the pain has gone from a 6/10 to 10/10. Every single fiber of my body. I tried laying down in bed, but kept kicking and moving my arms. So I got up and tried to lay with my Boy. But I quickly realized I couldn’t control my body and I’d wake him, so I got up. When I did, I noticed my vision is not just far more doubled – my right eye seeing images higher than my left as well which is very disorienting. I stumble and lose my balance. Feels like I’m stumbling drunk.
I really tried to sleep. I always do. Most nights I just try to lay as still as I can, I gently hold and softly smell Nikki’s beautiful long hair. I’ve laid there quietly for years doing just that.
I hate bitching, focusing energy on the negative only serves to give it more power. I don’t want to bring my family down or make them feel the torture either. The pain belongs to me, not them. But no that I have words, if I don’t start getting this out somehow, at least a little, I’m going to lose my mind. When I write here, I’m usually imagining I’m talking to myself. Let this be my release…
Right now every layer of pain has intensified. I cannot put words to this well enough nor can I possibly over-state it. Nothing like any pain I’ve experienced as a ‘normal’ Man. My face, my chest, abdomen, arms, legs. All my joints including my jaw even.
One of the layers is an intense, shooting electrical pain. From my hips, shooting down my legs. From my shoulders, shooting down my arms. Makes my arms and legs move against my will. I have gotten out of bed or stayed out so my kicking doesn’t keep Nikki awake, for years. I can’t control it, my limbs move against my will.
Another layer is an intense elecrical pain that if you were able to see it, I imagine it to look like the ‘snow’ you’d se on the TV back in the day when you turn it to a channel it doesn’t get.
Another layer is an intense ache that just throbs unlike anything I’ve experienced and an intensity unlike anything I could describe.
Another layer is an intense, squeezing, compression. Over my entire body, front and back, including my face.
There’s a layer that is Lactic Acid, more accurately, Lactic Acidosis, which a byproduct of my malfunctoning and damaged Mitochondria and Mitochondrial DNA (MtDNA). Feels like I have acid running thru my veins instead of blood. A very intense burning, searing pain that feels like my tissue is disolving in acid. *This is why I do the NSS (Norma Saline Solution) Drip as seen in my last post.
Then there’s the layer I know to be Oxidative Stress – very destructive to tissue. Oxidative Stress is precisely what causes a peeled Apple to turn brown. Feels like my entire body is dissolving, rusting away like a sunken ship does in the Ocean. Hurts like something not of this Earth, and covers 100% of my body in yet another layer of pain. ** This is ONE of the benefits of my Glutathione IV’S, makes this an order of magnetude better.
Then there are separate pains all over that move. There’s the tender tissue, constant Nausea, pain in my eyes. My lips, throat… my HEART, etc., etc.
The (different) pain in my swollen left foot – on the outside edge of foot, the ball of the foor and 3 smallest toes that started about 2 months ago and has yet to go away. Like walking on a bruise. Hurts like hell.
Speaking of bruise, I have bruises on my left leg that have been there since late April, at least, and have not even begun to change color like a normal bruise does when healing. They look like brand new bruises and just hurt.
Then there’s an uncomfortable (at best) electrical action causing my chest and abdomen to contract, causing my body to double over. Fight that all day too.
I know these are separate layers because they intensify or improve separately, my injections and/or supplement routine has a positive and distinctly separate effect.
When I lay own, immediately an additional layer of intense pain develops on the area I’m laying on. So for example, if I lay on my side, any area where my tissue is touching the bed/couch/etc becomes increadibly painful. My arm, shoulder, HIP (especially), leg… The pain continues to intensify until I move again. Like a ‘Charlie Horse’ or a terrible cramp over a bruise, this quickly gets to a 10/10 and is just one more layer.
Then of course there’s the shakes, Fasciculations and tremors.
This is NOT at all a complete list of what I’m feeling or going through at this moment. There’s far too many symptoms to list. But this is only about pain, and even at that I haven’t covered it all, by any stretch of the imagination. And I haven’t even begun to talk about the actual difficulties I have on top of just pain.
And all this is when I’m not doing anything. Moving, any physical exertion, tickling my Son even causes a significant and ugly response from my body which is on top of all the above.
Over the last 6 years, I have slept an average of 4-5hrs per night at best. And that reflects a considerable improvement since I got a Sleep Number (type) bed.
I take NOTHING for the pain. In the very begining, around week 3, I was given Neurontin for the Nerve pain – which is only one layer – but that gave me brutal headaches and caused other side effects. I knew then I’d have to face the pain someday, so I chose to face it on my own from that point on.
Let’s be clear: The ‘Medical’ system STILL can’t tell me exactly what the last pill they gave me did. There’s no way I’m taking more of their mystery pills. Nothing. Right?
Often, many people don’t seem to understand that the reason I can come across as intense at times is because I’m living thru something incredibly intense. Every single second of every single day, for well over 2,000 days and night now. I have become hardened. Galvanized even.
Somehow, despite not getting a single second of pain-free life, I have learned to transcend. I have learned not just to live, but learned to gently love through this torture.
I’m mentally blurred, my mind got whacked real hard too. I can’t see well enough or keep my balance enough to move from the spot I’m in right now.
I have been far worse, but this is still too intense to beat at the moment.
I don’t have a point, and I don’t expect that anyone actually read this whole thing. But if you have, thank you…
Your Brother in Fight,