No purpose, just pain.
Do you remember your first obsession? Your first love? The first event that filled you with so much excitement? Your first holiday? That time your favourite game you've been waiting years for, is here next week? The hobby you took on like it was your purpose in life? maybe you got married?
That 'thing' where it was alllllll you could think about. You'd spend hours trawling the Internet or even books for anything to do with your new 'thing.'
Your stomach would flutter with excitement, your heart would race with anticipation. The closer you got, the bubbling anxiety would build to the back of your throat & you pace around your home opening and closing the fridge until the day arrives.
*throws 🔧🔧🔧*
My "first thing" is my illnesses & their many many varying symptoms. All I can think about is how awful I feel, every minute of every day and somehow I'm not(?) dying. [How/Why?]
It occupies my every thought. I spend and have spent countless hours scouring the Internet, medical journals, buying books written by doctors, finding actual doctors, to find answers, help, guidance, a drug maybe.
I've found an online community that has helped me feel less alone but none of us have rarely found answers. When we are given answers we are told to just deal with it, usually with OTC meds because there is no help for what we have, apparently.
We are a community on the slowest moving boat you've ever seen, rocked by our pain, our cries, our wait, our hope, that one day we are seen and our illnesses are given the recognition, research and funding they desperately need.
My stomach does not flutter with excitement anymore, it's a string of stomach and bladder problems that are ignored*. I'm not dancing with excitement, I'm jolting with nerve pain that is ignored*. I'm not searching up anything anymore because the 10kg weights on my eyelids & the sedative that seems-to-occupy-my-blood, send me to sleep.
*{When symptoms are ignored that means they are never addressed, studied, tested, looked at, are put under an umbrella term for your chronic illness and that is where you will remain}*
I can't "pace" my way through the pain-filled days because I am too weak & exhausted, filled with heavy lead bones & lead blood. When I try to go back to my 'thing' I am distracted by the pains & fatigue & the fact that no help is coming, even from myself.
"How can I paint a flower when I'm being struck by lightening with every breath & stroke of the brush?"
I've put my all into finding ways to make the best of my symptoms, to manage them, understand them, come to terms with them, accept my new body and what it wants or needs. Yet I've failed to nail any real reason, finding, bodily requirement or pattern that makes it manageable or predictable.
Pain diaries, food diaries, bathroom diaries, sleep diaries, how many diaries over these years will/does it take for a result? A conclusion? Blood tests, urine tests, tests tests tests that provide the same information but no further action. How many needles does it take for further assistance?
All of this & I'm told to be happy, be grateful. I'm told to just take each day at a time when each day is the same, breathing, pain filled void, achieving nothing, trapped behind 4 walls. I'm told I'm not trying hard enough or that I can't give up.*
[apparently being sad about your symptoms means you have given up]*
How does one go on when they have nothing left of energy, no path to turn, no doctor to just "get it," when there is no way out of this trap.
How does one carry on with no purpose but pain?
If you got this far, thank you. This has taken me some days to write up💜✨
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