I have spent countless hours in research time and so many tests which included some wins but more losses. I share my findings which are hard earned on social media in hopes that it will benefit somebody, this is done as a reason to pump some light in people and I receive gratification from that, it helps reduce my emotional burden of the past trauma. I went from an angry misunderstood person to one that seeks gratification in the small things. I find more value of improving others rather than collecting material things, life is not about me.
As human beings, we are multi-dimensional that is the body, mind and the soul (inner being), to be happy we should be integrated on these dimensions since they impact each other. Science proves this. My mother used to say that I should think happy thoughts, I knew she was right, but my brain was singing a different tune. I would say to her that yes I agree that the mind can translate signals to the body which is scientifically proven (neuroinflammation) but the body can influence our thoughts which is now proven to be true.
Juan Gris - Guitar on a Chair |
It was not an issue of who was right but explains the interweaving of systems. I was a strong headed person which was forged in me from the countless trials mostly from insensitive people in my influential network. Of course, they said insensitive statements to me which further pushed me back, MECFS is not a disease where I am going to will myself out of. When people offered me these suggestions, I would metabolize what they said and realized that they were overstepping their boundaries. They were confident of their position but the overconfidence was error prone.
MECFS is much more than finding a single solution, far from that. It angers me that people including some insensitive doctors would relegate complexity to such a simple thing like GET or CBT therapy. That is like saying that I can build a house with just some wood studs. So, if I questioned their perspective and say something like well wood studs are absolutely necessary, but I need windows and a roof. How are providing just wood studs going to make my house, won't I get wet? :)
I now analyze people with their words and position and test them for any notions of arrogance or ignorance. I get that now but at an earlier age, I did not understand that and was impressionable. I found out later most people are unwilling to admit their faults. I get that because in spite of my perceived well-rounded knowledge that I don't know everything and never will. I approach complexity with humility and avoid being careless as it can lead to more problems. I digest information and spend a lot of time metabolizing that information.
Juan Gris Grapes |
I rambled on for a bit but will get to the crux of my post and that has to do with emotional vulnerability which was a big issue but has lessened over time due to my interior reinforcement and improvement in my condition. MECFS impacts a multitude of systems, immune, endocrine and neurological. Subtle changes or not so subtle changes occur but one of those was my neurological which I will not go into at the moment, my emotional state changed drastically. I became super sensitive to the interactions of others particular the hostile personalities. I was swimming on the edge of disaster and I knew it. Going to doctors was very intense, my adrenals had collapsed, and my neurology felt like razor blades penetrating every neuron in my brain. this is typical in MECFS people by the way. I was desperately trying to find a life raft.
I learned the tactic of avoidance in order to protect my inner being, I avoided the threats as much as I could. I would not let the people that presented a threat too close - (I have an excellent avoidance system in my brain :). I was cautious about attraction to the opposite sex for fear of both involving them in my mess and for my own emotional vulnerabilities.
I found the best relationships are those who are reciprocal. These people are more emotionally evolved and can "read the room" so to speak. These are not people whose expectations are rigid and unwavering but rather understanding and sensitive. They recognize the issue and make adjustments. These people are gold to me and I honor their respect.
Trust is an anchor for every human but particularly in MECFS, it is one of my highest priorities. When trust is broken it has far reaching implications for everyone, it causes fractures which can radiate to other systems. MECFS is a difficult river to navigate, it requires a multitude of tactics.
What I am getting at is that MECFS people have some specific needs with one of those being the emotional aspect. I feel this is quite important and should be addressed, monitored and improved on a day-to-day basis. You have to find the very best information and resources to survive.
My mother was right on her position in that it can give some help (won't fix everything but it will help). On a personal note, my mother was golden to me, she was my support, my motivator and my friend and I miss her greatly. Hopefully you have those people, recognize their support and build a strong connection, build, build and build. I am always available to help those in need navigating these difficult waters so feel free to contact me if needed.
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Love is patient, kind and does not boast or envy, it does not dishonor others or self-seeking. Keeps no record of wrongs, it rejoices in truth.
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