When you are living with an incurable disease, the best you can hope for is to manage your symptoms and to do everything possible to keep the disease from progressing. It’s what this entails that can push even the baddest badass over the edge.
It can feel like every second of every minute, of every hour, of every day is consumed with medical “stuff”. When you’re not at an appointment you’re scheduling one. There’s doctors, specialists, therapists, tests, & procedures. There are prescriptions and medical supplies that need to be ordered, picked up & organized. You have to set up rides to and from everywhere. It’s an insane amount of your life spent doing everything possible to keep yourself alive.
This is your life, the only one you’re getting. You have to make a choice, fight or give up. Giving up would be the easy route. We’ve all known someone who just can not take any more. There’s no shame in running out of gas to carry on the fight. None of us know exactly what someone else is enduring. We all have different strengths & pain thresholds. I will never judge someone else’s choices.
It’s not a one time choice. It’s a decision you make every day. Every time you’re passed from doctor to doctor, test to test, given one med & then another, all with no answers.
Meanwhile you’re trying to live your “normal” life. It takes major effort to create a false reality for your family & friends that everything is fine. You slap on that fake smile, until you can find your real one, once again.
When you’re searching for help, for answers, there’s a feeling of abandonment when the doctors you trust just pass you off to someone you don’t even know.
The worst is when one of your doctors retires or leaves the state. Let me just say that scenario raises the stress level to maximum & triggers your PTSD.
Rationally we know their leaving, is not about us. But it feels like your doctor just abandoned you on this crazy ride. Once more you feel like the doctors have let you slip through the cracks & left you in darkness again.