Today, I told someone that I was disabled as a way to summarize my situation. It was easier, at the time, but dear God what it did to my heart...
I've also been toying with the idea of getting one of those handicapped parking tags.
Fuuuuuuuuuuuuuuuuuuuuuuuu....
But then, just when you start to get really overwhelmed by the reality of your new life (read: redefining "success" and "productivity" to really, really low levels, which sucks!)... something positive gets thrown your way.
This blog post about loving yourself (written by a woman with chronic illnesses and pain), or more specifically, loving yourself more than you hate your disease and pain, pretty much kicked my butt. It was awesome and super inspiring, don't get me wrong, but I cried when I read the "Redefine Your Life" section... mostly because I was so sad that a.) I understand everything she says in that section and have experienced it firsthand, and b.) that my life has been reduced to "Yaaaaay! I showered today!"
Really?
Really?
I kinda just want to crawl in a hole and die because of that.
And the thing is that, no matter how hard I try (and I am trying), I can't do any better, because it's my best.
This is my best now.
I am having a hard time accepting this. A very, very hard time.
However... I then found a link from there to this non-profit community called Chronically Awesome.
This is what their "How To Be Chronically Awesome" page says:
(I'm posting the whole thing here, because really? How often do I/others really want to go chasing links around the interwebs? Not so much...)
"You are NOT your diagnosis! You are always YOU first. You are a person with a chronic condition; you are not the chronic condition. It does not own you.
I've also been toying with the idea of getting one of those handicapped parking tags.
Fuuuuuuuuuuuuuuuuuuuuuuuu....
But then, just when you start to get really overwhelmed by the reality of your new life (read: redefining "success" and "productivity" to really, really low levels, which sucks!)... something positive gets thrown your way.
This blog post about loving yourself (written by a woman with chronic illnesses and pain), or more specifically, loving yourself more than you hate your disease and pain, pretty much kicked my butt. It was awesome and super inspiring, don't get me wrong, but I cried when I read the "Redefine Your Life" section... mostly because I was so sad that a.) I understand everything she says in that section and have experienced it firsthand, and b.) that my life has been reduced to "Yaaaaay! I showered today!"
Really?
Really?
I kinda just want to crawl in a hole and die because of that.
And the thing is that, no matter how hard I try (and I am trying), I can't do any better, because it's my best.
This is my best now.
I am having a hard time accepting this. A very, very hard time.
However... I then found a link from there to this non-profit community called Chronically Awesome.
This is what their "How To Be Chronically Awesome" page says:
(I'm posting the whole thing here, because really? How often do I/others really want to go chasing links around the interwebs? Not so much...)
"You are NOT your diagnosis! You are always YOU first. You are a person with a chronic condition; you are not the chronic condition. It does not own you.
Define yourself by your abilities. Many of us have found abilities we never knew we had once we became chronically awesome. This isn’t the loss of your life, just the beginning of a new, and different life.
Communicate daily. Do not fall into the black hole of chronic illness. Talk to someone every day. Be it someone at home, on the phone, or via social media.
Every conversation does not have to be about your illness. There is so much more to you than your condition. You have so many interests, and so much about you that does not go away just because you are sick.
This may be a tough one but, get up and bathe and put on clean clothes every day. Ladies, if you are the make-up type, just put on a bit of gloss and mascara. Make yourself up a bit. When you look good, you feel good. If you simply don’t have the energy for all of that, maybe just a hairbrush and a clean set of PJ’s will do. Feeling fresh goes a long way.
Keep the faith! Whatever your faith or belief is, keep it strong. If your faith is in God, or yourself, just keep strong, and keep believing.
This is not your fault. You did not ask for this. Looking back over your shoulder and wondering why this has happened to you or what you could have done differently will not change where you are now. Always look forward. Never assign blame.
Don’t stress the small stuff, and it’s all pretty much small stuff! Stress can trigger flares, depressive or manic episodes, and all kinds of chronic symptoms that we don’t want. Learn the difference between problems and inconveniences. Many things are really inconveniences. Take a deep breath, get centered, and think. Learn to respond, not react.
Affirmations. Here is a simple one. At some point in the day, say to yourself, or write in a journal: “Today I was Chronically Awesome because…” and list all of the great accomplishments of your day. Anything from showering and getting dressed, taking a walk, to doing a half or full day of work at the office. Whatever you got done that makes you proud. “Today I was Chronically Awesome because I walked to the corner of my street and back.” Some days your list will be very long, or full of amazingly big things, other days the list might be shorter.
What matters is that you accomplished things, you own them, and they make you Chronically Awesome! Be proud!"
So yeah. That's that. I'm gonna try to take those words to heart and not get beaten over the head and heart by this new reality.
Sorry for turning into a sobby sadbucket. It's just that some days it really hits you, you know? As much as I'd like to be cheerful... I'm not big into faking it. Especially here.
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