What is it like to escape your home? To truly be able to leave your home without a care in the world. To be outside and breathe air not causing you to gasp for breath? I wonder what it is like to be free, to be out and about and doing things with people.
Bitter now, the bite of life, sinking treacherous teeth into the skin of my bubble bursting it and forcing me back to the reality within this prison. Thoughts of a life once lived dwindling in the kindling of the fires of past flames. No one reaching in while I reach out into the void, vastness of coding, lost I deteriorate in this digital space.
Alone, what is it to be alone. Be by ones self for years, with glimpses of a normal life lingering in the splashes of color which dissipates in the distain drenching my soul, sorrow, in my vapid, campy life. A bubble of protection bursts as the selfish continue to squander the gifts they take for granted.
The ineffectual nature built on lies and promises lacking validity. What is it like to have the privilege of leaving your window open and breathing in the air and having no fear of dying lingering, nor having the threat of life a concern as you open the window to breath in your privileged fresh air.
My bubble was burst years ago, the amount of disrespect I have encountered from others leaves me to linger in a space of messy grime, where I wonder if anyone will ever truly understand me. Will anyone ever do what is needed for my safety to spend time with me? I am tired of the lies, promises broken, and people not bothering to be empathetic or put themselves in someone else’s shoes. While I am bless with people online, I truly wonder what it is like to spend time with someone in the same space on a regular basis.
I am forgotten. I am left to my own devices. Slowly losing hope that people in real life care to be there. I may have to have surgeries soon, and I know no one will be there for them. I will have no visitors in the hospital, no one to visit me while I recover. Slowly, losing faith in humanities goodness. The unsweetened side of life’s devils masquerading as friends, family or spouses, I wish the devilish behavior’s of others was not apparent to me, I wish I could go back to naïve bliss.
The bubble which bursts when we are chronically ill is the bubble of life as we knew it prior to illness. Life changes when we get sick, people change including us. I had to do what is best for me and avoiding people who could not follow my protocols to keep me safe. My life means more to me then someone wearing perfume, or using laundry soap that causes me to swell. A period of remission is what I hope for. To be able to experience things like I did in 2019, the year I was in remission and my symptom load was less and life was pleasureful.
Am I indignant? I am vexed by the world, its complexities and the annoyances of the social normative. I am overly analytical of everything, constantly analyzing situational information to draw conclusions. While my bubble burst years ago, I want to burst the bubble of those with health privilege, it is vital to put ourselves in others situations to help and not hinder. While I am bias living in a bubble, sheltered from the harms of outside world, I feel less and less that people try to see things from my perspective.
People around me truly do not understand the complexity of MCAS, EDS, HyperPOTS. It is hard to explain, exhausting to try, and I burn out. This bursts my bubble again that people are not willing nor wanting to absorb the information I offer.
In the bondage of these diseases I fade into the mist.