If you were diagnosed with a life altering illness how would you live different?
If you were diagnosed with something that would likely have you wheel chair bound by your 50's or too sickly to enjoy older age how would you live different? What if you could turn back time. How would you have lived different?
In my late thirties I was struck with a mystery illness. It started with rashes, moderate fevers, and a slow but steady increase in the normal pains of life. By the time I was 37, the aches and pains were greatly amplified and the fevers reached as high as 105 degrees. I had seizures and the fevers brought delirium while the rashes started to mainly be on my face. I started getting sunburns and sun rashes after just minutes of exposure to natural light and with them came awful fevers. I kept on going to work until I was scheduled right out of my job.
It took over five years for it to get diagnosed as lupus.
As to how I'd have done things differently if I'd known about it, I'd have been really, really pushy with my doctors and stayed as pushy as I had to be until they came up with a diagnosis that made sense. I wouldn't have put up with all the repeated poking and prodding of my lady parts rather than my brain when I was having neurological symptoms, either.
I'd give up working at my day job before my day job got rid of me. I'd forgive myself for being sick right away instead of wasting my precious time on hating myself for weakness for a few years. I'd let myself enjoy what I still could a lot sooner, embracing my inner foodie and inner artist immediately rather than treating them like enemy slackers trying to corrupt me. I felt like if I was too sick to work, I didn't deserve any pleasure.
Before my illness struck, I was used to being physically strong. I enjoyed riding my bike, climbing cliffs, climbing trees, hiking, playing Frisbee, tickle fights, athletic sex, and all sorts of other physical recreation. It took a long time to get used to the idea that those things weren't for me anymore and the ways I had to prove it to myself were not pretty. If I had it to do over, I'd try to tell myself, hey, those things are in your past for now, take care of yourself and medical advances in the future might give them back to you.
I also wouldn't let people who said, "but you don't look sick," get in my head and wake up my self-hatreds and I'd tell them they don't look like a-holes, either, but they are.
You can still be sick or feeble and enjoy life. If ill, injured, and elderly people got appropriate medical care and pain control in this country, people wouldn't have to fear illness, disability, or old age nearly so much. When my fevers and pain are under control I can have a great time; I just had to learn new ways to enjoy myself.
What a beautiful answer! I was diagnosed with RA and Lupus almost a year ago. I certainly understand! There is so much I miss, and so much I worry I will never do again! Good luck hun! Thanks for the Answer!
Beautiful answer. If only pain were visible to others, then they might understand. But people only think of themselves most of the time. If it doesn't affect them, then it must be all in our heads. Not so! Enjoy life and health while you still can!
Up until 2006, I lived a normal life and enjoyed most of the activities I'd enjoyed during my lifetime, especially going to the lake. We owned a small sail boat that we sailed on a nearby lake. Then that year, I was on a city bus that got slammed by a car. Both vehicles were going between 50 and 60 mph, and the bus rolled over on its side. I did a somersault over four seats and landed on my back on a seat frame. I was also hit in the head by a pop-out window. With a couple of cracked vertebrae, broken sternum, and four broken ribs, my life changed drastically. While I can do some things that surprise even me, the simplest tasks like washing dishes and loading the dishwasher can be quite painful. Walking throws my back out of place and causes a headache, so I can't jog or go on my daily walks like I used to. I feel like I'm getting old and soft too soon.
I have a handicapped parking plaque that I frequently use, although I don't use it on my "good" days. I sometimes fake a limp so people won't accuse me of having nothing wrong. My dream was to climb Pinnacle Mountain, an old volcano about seven miles from my home. Why I never climbed it when I was younger, I don't know. Anyway, I doubt if I'll ever be able to navigate even a walking trail to the top. I would have climbed that mountain, floated the Buffalo River, and lastly, I never would have gotten on that bus that morning. I am not in a wheelchair yet, but I may have to face that in the future.
As far as my treatment of people, especially my family and coworkers, I am grateful to them and I wouldn't treat them any differently, but I dislike the fact that they've had to make some adjustments for me. I don't feel angry at "god" or any other deity for my misfortune. It's just life to me.
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