Chronic Illness, General, Mindset, Support Network

Chronic Illness Life: How I Explain What It’s Like To Live With Everyday Challenges and Questions.

You might have noticed that I’ve been fairly quiet lately on my pages and here on the blog. The reason for this was fairly simple and something we’ve all experienced, my health spiraling out of control despite my best efforts. Soon after the physical challenges of a flare come on, the mental challenges follow. This has been my battle of late.

I guess I should be happy to say that this has been the first bad flare I’ve been in for a while now. While I battle everyday to live a healthy and full life with Crohn’s, asthma, arthritis, and other hurdles, there is a difference between battling for a healthy life and battling a flare.

Not only has my Crohn’s disease has come back, but I also began having horrible back pain as well. The combination of the two was crippling as I walked around the house or up the stairs like an elderly man. And of course, my mental health was being challenged too. The worst part is that I know what I need to do, but many times couldn’t.

Right now I’m trying to think of a way to explain to an able-bodied and healthy person what it’s like to never know when your life is going to spiral out of control both physically and mentally. I feel like this is another mission impossible moment because explaining this isn’t an easy task, for anyone.

At the moment the analogy that comes to mind is that life with a chronic illness is like riding a hot air balloon but one that you know isn’t safe. There are question marks and variables written all over this balloon, but we have to ride in any way. It’s not our choice. This is the balloon we were given and it’s ballon we’ve been forced to live with.

We ride this balloon reluctantly and when things are going well, our spirits are lifted into the air. This feeling is one that we always want to hold onto. A feeling of hope that this ride is going to be better from here on out. As we sail through the open air, we can’t help to think about how amazing it would be if things were always like this. Sadly, we know in the back of our mind that it won’t last.

The reality for anyone with a chronic illness is the balloon is always going to face challenges and there will be scary times ahead. Even when we’re riding high, we know there will be a time limit on how long it will last. We know the balloon isn’t in good shape, and it’s going to take a lot of effort to keep it in the air.

Suddenly, we begin to see a small tear in our ballon. Out of this tear goes all of the hope we’ve been clinging onto, and anxiety begins to set in.

You watch this tear with constant attention and as you see it getting bigger, you see another hole. Now we find ourselves going into panic mode. We rush to repair the holes as the balloon slowly falls. We do everything we can in order to get this under control but it’s out of our control. This is frustrating because there are times when we’re doing everything right, but it still doesn’t help.

It’s hard to explain the feeling of this balloon falling and the fact we can’t keep it from falling at times. As the fall becomes more and more out of our control, we have to take drastic steps, even if they aren’t the true answers to the problem.

A good example of this is when I recently had to go back to the dreaded prednisone. This is always a last resort, something I will try to avoid. But at times, a short term fix is exactly what we need to slow the freefall and even stop it too by us some time.

My inflammation got some bad, my back pain was so severe, and my body was clearly not working well for me. This was the only choice I had. But it’s bought me some time to figure out the next steps, have other treatments kick back in, and get me active again to manage my health better.

Now I can say that my balloon has stopped it’s freefall. I’m feeling better and I can even say I’m starting to float through the air again. It’s a great feeling because hope has entered, confidence has been restored, but I have no idea for how long.

I will be on prednisone for at least a little while now. So when will the next tear begin? When will the next hole begin to grow? When will my hot air balloon begin to slowly fall again?

These are questions we must fact every single day. And it really really sucks.

So that is my take on a small part of what it feels like to live with a chronic illness. It’s not a fun one, but I feel like this is the best way I can describe it to someone who doesn’t understand how hard a chronic health challenge is.

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