I'm a very driven person. I spend the majority of my time working either at my demanding job or on my own personal projects, self improvement, and learning. My brain never wants to shut off, it's constantly spitting out ideas and plans for awesomeness. There's only one problem:
Every day I suffer from chronic illness and I can't put 90% of those ideas in to action.
I was born with a curved spine and had 2 surgeries to correct it when I was 13. Last year I had to have another surgery after I lost the ability to stand for more than a few minutes without my legs going completely numb, I was in agony whenever I stood up. I suffered like that for over a year before I finally found a doctor and surgeon that wanted to fix it rather than throw a pain prescription at it. Now every single vertebrae in my back is fused with screws and rods to keep things straight. The scar tissue from all my surgeries makes my muscles stay cramped up constantly and muscle relaxers are practically useless because of how tightly they're cramped. I try to do stretches and myofacial release to make the muscles relax, but they just cramp up again the next day.
I also began suffering from Fibromyalgia before I even hit 20, a condition that causes all over body pain, debilitating fatigue, short term memory issues, and a variety of other ailments that come and go at random. It's a bit like the feeling of having the flu minus the sore throat, coughing, and runny nose - you're just exhausted, weak, and ache all over. But with fibro it never goes away. I can take pain medication but that wears off and it doesn't do anything for the fatigue.
On the less crappy days I hide being "sick" so that I can fit in and be a productive and positive member of society. It's a behavior that exists on a subconscious level, I don't even realize that when someone approaches me that I force myself to sit up straighter or smile through pain or pretend like I don't feel more like laying in bed than anything else. At best I can admit to them that I don't feel great today but I follow it up by saying that maybe tomorrow will be better - only it never really gets much better. I always want to put a positive spin on things because I'm a relentless optimist and I can't help but trying to make it out like things aren't as bad as they really are. The truth is that every day I'm in pain and tired, without exception. Some days are just less worse than the others and I fake being ok on those days.
I don't "look sick." There are no visual indicators that
would tell someone that I'm not doing well. Concealer does a
pretty good job at hiding my racoon eyes when I'm particularly tired,
it's great stuff. And all the rods and screws in my spine are hidden
inside me, you'd never know they're there. But the reality is that I
will be in pain and fighting fatigue for the rest of my life - unless
medical science makes some fantastic progress. Only those who are
closest to me know the full extent of my illness because I go in to my shell
and shut down to the outside world on my worst days.
I'm really bad at being sick, I berate myself relentlessly to just pull myself up by my bootstraps and get it together and take care of the things I need to take care of. And when I
just physically or mentally can't get it together (which happens frequently), I wind up feeling like a total failure. I go through this cycle again and again and again and it takes a major mental toll. If I'm not taken down by the physical issues then I could still be suffering from the mental drain that living like this has on me.
But like I said, I am an eternal optimist. I want to believe in a better future. I want to believe that I'll find a new treatment, or something will happen that will change things. I want to keep working rather than giving up and accepting disability. I want to keep creating new projects. I want to continue finding ways to improve myself. One of the ways I need to improve is to learn to accept that I suffer from chronic illness and that it's actually ok if I'm not up to doing anything. If you suffer from chronic illness and struggle with this too, I just want to encourage you to not give up. Take it a day at a time and remember that it's ok if you're out of commission for a while. Don't blame yourself and I'll keep trying not to blame myself either.
So if I stop posting online anywhere it means that most likely I'm just going through a flareup of my illnesses and I'll appreciate any well wishes sent my way. When I return I'll probably have had time to think up all kinds of new ideas that I'll be dying to show everybody. Remember that people can have illnesses that are "invisible" and that you don't always know what someone may be suffering through. Everyone has challenges in life so give the benefit of the doubt and be understanding. People will appreciate you for it more than you will ever know.
Sunday, April 2, 2017
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