Just something that popped in my head…feel free to ignore
How does one measure “quality of life”?
Do they measure it by the minutes you’re alive?
The days you “walk”?
The days you can eat?
Because as it stands….I don’t feel like this is quality of life at all, but more like QUANTITY of life. Struggling to get things done only to become exhausted by simple things or being constantly in pain is NOT what I would consider QUALITY.
To me, “quality” emphasizes one’s ability to enjoy life–even it’s ups and downs. It means you aren’t wondering if tonight will be the night you stop breathing and your heart stops beating longer than a few seconds and don’t wake up the next morning. It means you can get things done without being half way done because exhaustion or pain hits and floors you. It means you are able to be productive at something for longer than a couple hours (IF you’re lucky). It means not having to beg the Universe or God to PLEASE help. It means not being judged by others that you’re overreacting because your stupid body wasn’t made right. Or even judging because your body just doesn’t work like it used to (which everyone expects you to do or be).
My whole life I struggled to be “normal”; convincing myself that all “this” was in my head. Well, it turns out I *do* have something wrong with my head and because all the evaluations and the doctor appointments, these invisible illnesses are real. I have always been clumsy, always falling down or tripping. That is how I earned the nickname Grace from my family.
It’s all so frustrating to learn you have lived a lie your whole life and doctors made you think you were “crazy” or a hypochondriac….when in reality—you weren’t/aren’t. And because of that lie, your body suffers the consequences. Everything I ever hoped for or dreamed of was killed in an instant when the multiple diagnoses came out of the woodwork as I have gotten older. Diagnoses that began when I was 17…and still continue today. It’s hard not to get depressed when you don’t know where to turn or what comes next. The only thing I do now is go to doctors or stay at home. I try very hard to keep up with daily living with my 10 year old. I want her to experience music, nature, art, well, anything that will enhance her life and help her to learn about the world. I want her to always know she is loved. I am pretty sure she knows this. But reminding her is becoming habit. There is huge part of me that wants to giver her all the things that I didn’t have growing up.
Limited or fixed income is hard. It puts a crimp in many activities. That makes the QUALITY of life more difficult. I pray and hope that this pain doesn’t slow me down so much that I can’t enjoy K’s growing up and becoming a young lady.