I remember when my hair was full of knots and my knees stained with dirt. And when I spoke, questions of wonder bubbled out from my rose colored lips. The heart I held within my chest was as trusting as a delicate porcelain teacup. I wandered through thickets of weeds and sang myself lullabies entangled with fairytales. My world was delectable like homemade lemonade on a warm summers day. How I loved when the wind rustled the leaves furiously while teasing my balance, as I would tightrope across papery plywood as high as the stars.Always was I ready for the unknown, charging with excitement into my next grand adventure. I never ran away when met with danger, for my curiosity led me over unsteady hills and through exposed construction zones. As a blooming adult I flew down side streets in my mustang, music blaring from the windows, moonlight dancing through my auburn hair. Boys and romance intensified my waking life, spilling over into my dreams. A fiery passion was blossoming in my vast and auspicious sky.I was only just discovering who I might become. Little did I know then, my world was about to stop. Fragments of my youth frozen in time.An existence so isolating and treacherous unfurled before me. Where health once existed, a life altering disease would take its place. The freedom I experienced as a child and adolescent were soon to become a distant memory as I was pushed headfirst into a harrowing nightmare.I deeply miss that carefree girl, who had once chased the world in dresses made of poppies. And ran barefoot through abandoned houses haunted with feathery ghosts. Who was out climbing mountains before the sun was at its peak and who slid down the banisters without holding on. However, she is still here with me, she is the strength and the fire that keeps relighting my waning flame. She is my reason for surviving what has felt unfathomable. She is the one who continues to whisper in my ear, “Our story isn’t over yet, this isn’t how it ends, there will be a brilliant light at the end of this long tunnel, we must keep trudging on.
Also of note, when you actually see what goes on in the community of people with ME/CFS, there really are loads of cases where people die of organ failure, renal failure, seizures, stroke, heart etc…with heart attack, cancer and suicide being the most prevalent. The thing that rarely gets mentioned publicly is that the suicide was driven by the end result of having this disease, not always depression, and if it is depression driving the final act, it was born as an end result of the disease. I think people just often find the whole situation too daunting with little public support as to the sheer enormity of the bleak reality of this disease…if we appear ‘o.k.’ then surely we are feeling ok….NOT so!
And then there are all of those other deaths, which 9 times out of 10 are attributed to heart disease ,cancer, organ failure etc…and yet these same people often suffered for YEARS with ME/CFS before subcoming to the heart disease, cancer, etc…yet the obituaries gloss over or even fail to mention the ME/CFS which really was the sneaky silent killer lurking for years. This angers me greatly, because I feel it should be known the true cause of death (or at least a major contributing factor) was the disease that no one wants to even acknoweledge exists. It is such a weird reality to live in. If we even get cancer or some other illness, I have noticed we are often not treated as well or with the same amount of care or compassion as the person who never suffered for years on end but ended up with the same diagnosis of heart disease/heart attack, cancer etc….It is a very weird thing, but believe me, it IS a thing. I used to think I must be being paranoid about it, but I’ve witnessed it too many times. Its a very weird thing, but people DO do this to us. Maybe its because we’ve been ill so long they have become desensitized. I don’t understand this phenomenon, but I can tell you, it is very real.
Plus you gotta love all the helpful advice from others who haven’t got a clue. I think maybe we just get too used to hiding our pain and trying to be as normal as possible so we don’t interfere with other plans and lives too much. I know there are plenty of other horrible diseases and ailments out there, but there is some special kind odd sick bullshit that goes on with this disease. Everything is backward, you exercise, you feel worse. You eat like a normal person, you feel wose…its like you are damned either way.