Today’s prompt asks us to do a “Best Of” post. We are to find a post from the archives to repost and I picked Living With A Chronic Illness. I chose this one partly because it was one of my earliest posts. I talk about life before and after I got sick and some of the things I’ve learned and feel about living with an invisible chronic illness. This is what I consider a timeless post. It doesn’t matter when I would post it, I would still feel the same.
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I miss my old self.
I’m a homebody. I enjoy being with people but I’m a homebody. I did the parties and going out to the bars when I was younger but I was also happy to go home, waking up the next day secure in the knowledge that I was home safe and sound, the car was parked where it was supposed to be and I had enjoyed a fun night out with my friends.
I grew up a bit, worked on some issues, had a job at a company that I enjoyed and liked the people I worked with.
I had my own apartment, my own stuff and even my own kitty cat.
Sounds great, doesn’t it? Then I started thinking and making plans.
I started thinking about going to university. I never did that after high school. After high school the plan was to work for a year and with the saved money go back to school.
However, at the time, leaving home was mentally and emotionally more important and I was on my own a couple of months shy of my 19th birthday. Looking back, I wish living on campus was an option that I considered. I can’t even tell you if I thought about it or if I needed to be on my own that badly. I think I needed it that badly. But you have to try and live life with no regrets. Most things that we think of as regrets really aren’t and only hold us back. We did what we did at the time and there is no going back, we can only move forward.
With this lesson learned by my thirties, I started feeling settled. Started feeling more sure of myself. Started making plans.
And then I got sick.
And life was never the same.
When I describe events in my life, I usually refer to them as either before or after I got sick.
It’s hard to describe to healthy people how you can’t do things anymore. How there is no “normal” in the normal sense of the word. Not when you go years with the doctors not being able to tell you what is wrong with you.
At least I now know that my ears are part of the problem. My ears give me a domino effect of feeling unbalanced which leads to a loss of appetite or an upset stomach, a lack of exercise and feeling tired. And just for fun, it happens again and again as these side effects keep building upon each other. Throw in some air pressure changes and bingo! I’m either sitting or lying down for most of the day trying to keep the dizziness at bay.
But, catch me on a day where I can walk the two blocks and pick up a few groceries while doing what I can to not throw my balance off, and it doesn’t look like I’m sick.
Or, worse, it looks like I’ve been drinking because I will still stagger a bit while I’m walking.
The wonder of my invisible chronic illness. Consume no alcohol but still appear drunk. Maybe it wouldn’t seem so bad if I had a bit of a happy buzz happening but no, can’t have a good side effect now, can I? (Must be some law of the universe. lol!)
I’m glad people don’t understand what we deal with on a daily basis because I wouldn’t wish living with an invisible chronic illness on anyone. But, the last number of years could have been so much easier and not as lonely if people were less afraid. Like so many others, I have lost friends who didn’t understand, didn’t try to understand or had their own problems that they didn’t want to have to think about or deal with the problems of someone else. The stigma of not being “normal” has to fade away and die.
You see that happening now as the aging population is dealing with a variety of illnesses and disabilities. Having something wrong with you, something that is not easily fixed or explainable is a very scary prospect for everyone involved. How do you fight something you can’t even name? Or an illness that has a name but the knowledge and technology to fix it doesn’t exist yet? We all want to fight back. We all want to get better. This is not how we thought we would be living the remainder of our lives. We can’t just “get back in the saddle” and ride towards a healthy and fulfilling life. That option has been taken away from us.
There are so many misunderstandings and misconceptions that people have no idea how they act, or not act, around us.
And people don’t understand how much control is lost when someone becomes chronically ill. Physically, emotionally, mentally and for some people, spiritually lost and out of control.
While you do live with the illness, it can also consume you and consume the person who was once you. And there is no going back.
You have to make adjustments to your new life. Some work better than others. Some, not at all. And it’s an ongoing process because what works at one point…stops.
And the learning curve becomes steep once again.