Living in my bubble where nothing is real. There is no sorrow, there is nothing.
This imaginary safety net I build is for when I fall, so I don't fall too far. My thoughts are real and filled with raw honesty. Sometimes they scare me to share them with you. The ugliness of my illness, and the torture it upholds on me is too much for anyone to handle. This is where my bubble comes in play, I can live my life the only way I know how by pretending everything is fine. By not recognizing how debilitating this disease is. By playing off the pain and discomfort as "not that bad."
I use my bubble not only to protect myself, but also to protect you. To protect you from the horrifying truth of what I see and live with everyday. Not living in my skin makes it hard to believe and feel my story. While at the same time you may say you understand, but you really don't—and this is only the PG rating you're getting and you're already lost (trust me).
I live in a lie everyday while trying to stay an honest man. I forget at times I now live in a land of make believe, and I am often smacked in the face with the reality of a man living with a neurological disorder and chronic disease.
The truth hurts, but the reality is like a real life massacre. I live in a happy place, with happy people, and I live a very serene lifestyle. The reality of my life is if I look into my mirror I can see terrors and the evils of my disease not too far behind my smiling face. The terrors are what I face when I step outside my protective bubble. The terror of damaging realities and an everlasting battle with demons, debilitating symptoms, and irreversible life changes due to being beat down from a uninvited and indescribable disease.
The bubble keeps the beast that lives inside me away. It protects me from watching my life be torn to shreds every minute of every day. This bubble gives me a moment of peace. A moment of silence, and moment of still. Not just for me, but for you as well. This bubble assures me that I am not going to hurt you anymore than I have to with the ugly scary facts that I hold.
To look inside my mind
The many personalities of living with a neuro illness.
There are so many ups and downs while battling neurological and chronic disease.
This is a crazy roller coaster ride; living with chronic indescribable pain mixed with constant emotional battles. Never knowing when we will have crazy uncontrollable bursts of laughter, or any sudden meltdowns of wailing and crying.
Life with an invisible illness is unpredictable and very unstable making any decisions of its holder very challenging and unsure.
To never know from one minute to the next what your health will be like makes it really hard to give an honest answer of how we feel.
Also always being on high alert for our symptoms adds to our weakness in energy.
Simply it is not answered by being positive or blanking out our symptoms. We simply cannot have our guards down while knowing how detrimental a symptom can be if it decides to flare up at that moment.
It is bad enough to never see or feel what is going to happen next when we are in our unique situations. Yet alone to ignore the facts that we have learned so far about ourselves, that would be absurd. We need to stay on constant alert of our health every minute. While trying to settle the multiple fires before they are so much that they become out of control.
The number of scars that are hidden deep inside our bodies, on our brains, and on our spines are record breaking (and heart breaking as well).
Each of these scars have a story. A story of hate, chaos, and destructive behavior. Each of these stories never have endings, they are ongoing and rewritten for life, always leaving neurological warriors guessing what is to be written next for their life story.
Scars are constant reminders of pain, torture, and stolen independence of what we once had.
These scars are living, and active, and unpredictable thugs who shared our already torn nerves, and guide them to miscommunication and misconduct.
Our bodies' nervous systems, that once so neatly-organized ran like a fine machine, now live in a deteriorating frayed rat's nest of leftovers. Half parts of nerves now leading nowhere, nerve endings flopping around like live wires in our bodies. Zapping, shortening out, and working half the time if we are lucky.
Our nerves are literally shot. Not just in our minds causing anxiety, depression, and panic. Also on our outsides, where we have no feeling on some parts of our bodies, while the others have sharp shooting pin-like pain going through them on a constant basis.
Have you ever felt pins coming through your fingernails from the inside out? I have, as a matter of fact, in all ten fingers at once.
Have you ever been shocked hard enough to jump? If so have you had this happen more than twenty times in thirty minutes? I have, shocks all over my body non-stop for hours on end. Oh ya, when I say all over, I mean all over (my penis, anus) and even my tongue.
This is a very small idea of one aspect of what our bodies do to us because of nerve damage.
To understand our battle is a huge part of our succeeding with this uninvited beast.