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I'm Exhausted Living With Chronic Illness — and It's OK to Say So

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I’m tired … so tired!

I’m not depressed, I’m not sad, I’m just tired.

My body is exhausted from fighting with itself daily. It can’t even get a divorce from its rare disease and walk away to a struggle-free life.

I’m just tired.

Tired of medication. All the planning and administration that goes into a meal’s worth of tablets is tiring.

Tired of people. I know that sounds awful because I love people. I love caring and sharing and supporting. My online work through my support forum means the world to me. So, please forgive me when I say I’m tired and I’m struggling to hear the needs of others, just for a little while. Maybe only a few hours, or perhaps a day.

I know I’m just having a moment. Is it a moment of weakness or a moment of strength?

I think it’s a sign of strength. I’m not afraid to say right now, in this moment, I’m so tired. I’m being real. It’s how it is.

I don’t want sympathy. I don’t want people to feel sad. I just need to express the exhaustion I feel living with an unrelenting, cruel and downright disgusting disease.

I’m always the one championing positivity and encouraging others to find a way to live a new and fulfilled life with chronic illness. I believe we can, and on most days, I do. Saying I’m tired, I need a moment, I need a time-out, doesn’t change any of it.

If anything, saying I’m tired and acknowledging I can’t do everything, is part of being positive and living a fulfilled chronic illness life.

It makes me think about the changes I might need to make to ensure I don’t lose sight of my aim to live the best life possible.

Allowing extreme tiredness to continue without stopping to acknowledge it, listen to it and address it, would be setting myself up for a disaster I may not claw back from.

So, what would I do?

If I wasn’t so tired and ravaged by disease, what would I do?

I’d walk and not break my feet.

I’d sleep and wake up refreshed.

I’d eat what I like and not have stoma issues.

I’d reclaim my linen cupboard and not have it looking like a pharmacy.

I’d go out of the house without thinking of the ramifications, or planning it hours in advance.

I’d invite friends over and host a dinner party with ease.

I’d be working full-time and loving every minute.

Hang on a minute …

The lightbulb moment has begun to dimly shine in my tiredness. It was those last words:

“I’d be working full-time and loving every minute.”

I am doing just that. Even with my rotten disease. I’m working with and for people I deeply care about.

I’m helping others navigate this chronic illness journey, or perhaps chronic illness nightmare might best describe it.

Would I change anything? I’m torn. Without my illness, I wouldn’t have the insight, understanding and perhaps even the desire to help other people with chronic illness. Yes, I’m tired. We are all tired in my community to varying degrees.

My tiredness won’t necessarily pass, but I will rally. I will move past, through, over and around this moment.

For now though, I’m just tired and I want others reading this, who are also so exhausted, to know it’s OK to say so.

It’s OK to be tired and to have had enough of your disease for a moment.

In fact, it’s perfectly normal!!

Unsplash image by Ryan Moreno

Originally published: March 24, 2020
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