Embracing Chronic Illness In a “Deliberate” Way

One of the hardest things about living with a chronic illness, is learning that life has to be paced.

No more jumping out of bed and embracing the day with the energy of a netball team.

I know that sounds like an extreme analogy but that is how I used to live. I had that kind of energy.  I have always loved life. I would wake up every day with the anticiption that the day ahead would bring new and exciting opportunities.

To do what you might ask?

Well, just to live and contribute to society, be that business, community, home life, church life…whatever!

And Then Came Chronic Illness

I know I am not alone in experiencing a life changing health event. There are many, many people suffering from long term chronic illnesses, be that physical or mental disabilities. One minute active, the next wondering what to do with a failing body.

I can make lists as long as my arm but there is no way I can physically achieve them. I can dream of far away adventures or just popping out on a whim to visit friends or family but the reality is I can’t do that either.

Is that so bad? No, not really.

Embracing Every Day Like It’s Sunday

I have always loved Sundays. In our home it’s usually a quiet and reflective day.  I say usually as I’m married to an Anglican Clergyman and Sundays were  far from quiet in the past. It was actually the busiest day of our week!! They have always been reflective though.

Thankfully he is retired now, as my carer, so we can definitely reclaim Sundays as a quiet day.

Some days still feel like a Monday, or a Thursday if I have medical appointments to get to and they are extremely difficult days for me physically.  Other than those odd busy days, I can pace myself.

That’s why I’m medically retired, to care for myself and manage my disease and find a new quality of life.

The biggest battle with embracing everyday like it’s Sunday, is with me.

I know that physically my bone disease limits me in every area of life due to pain and disability. My broken bones serve as a constant reminder.

You would think I would be intelligent enough to give myself permission to treat every day like Sunday, or at the very least like Saturday!!

Mostly I do but there are still moments and days when I want to run, I want to plan and I want to contribute to life on a larger scale like I used to. Underneath the physical disabilities I am still me.

I am still that same person that jumped out of bed every morning with way too much energy.

I can’t change my health situation but I can always change my mindset and I have deliberately choosen to embrace my new life.

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Deliberately Embracing Chronic Illness

Now there’s a concept that may raise an eyebrow or two. That word “deliberately” is key. I think there is a sense of determination and grit needed to fully accept chronic disease.

You almost have to “commit to it” when you know it’s permanent. Commit to it in a way you would your career or marriage or any goal or life pursuit.

If you have sought all the medical treatment possible, followed your medical teams advice to the letter of the law and been told your disease is chronic, permanent and progressive…..well it’s probably time to just go with the flow and accept it for what it is.

I have learned to live very differently over the past 4 or 5 years.

Acceptance has been a gradual process but a necessary one to discover a new quality of life.

Finding A New Quality Of Life

You know “quality of life” means different things to different people. We all have to work out what’s truly important to us to find a meaningful way to live.

For me, being passionate about serving others has been my driving force. My work focused on serving, both in the business world and in my roles in church life. When I was working and serving others I was always happy and content.

I was always content in my home. I’m a homebody. I was happy with quiet weekends, takeaways in front of the TV, or fish and chips by the beach.

I loved road trips but never had a burning desire to “travel the world”. I travelled to the UK when I was 18 and again at 20 and that satisfied my international travel bug.

I’ve travelled extensively throughout Australia and my husband and I have lived in many different places across our beautiful country. I’m content with the wonderful experiences and memories I have from my “healthy” days.

So my new quality of life isn’t that much different to my old life….I just do it all from home now. My fingers do the walking online as I serve and share with others on my online forum and through my writing. Our car can still take me on short drives to look at beautiful scenery.

I can still potter with home decorating and I’m so grateful that, for now, I can still live in my own home.

I’m not going to waste what precious energy I have being angry at my disease or my body. Things happen in life to all of us in varying ways.

Things we didn’t see coming. Things we wouldn’t have chosen. Things we can’t change.

I’m “deliberately” accepting my circumstances so I can get on with living the best version of life on offer to me.

I’m “deliberately” giving myself permission to “Stop and Smell the Roses” every single day as if it’s Sunday.

Who knows with enough Sundays all strung together, I might actually be able to enjoy the odd Tuesday and Wednesday….Monday’s may still be a bit much !!

Take care

Sam xx

 

If you’re looking for genuine support, care, understanding and friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

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14 thoughts on “Embracing Chronic Illness In a “Deliberate” Way

  1. Hi Sam, another post for my bulletin board collection! Thank you for your words. Pema Chodron wrote, “Nothing ever goes away until it teaches us what we need to know”. I keep this near me and think of it often. The universe and god are smarter than we are. Forced retirement for you and I must be for a reason. So, like you, I am learning to embrace it. Hugs to you friend. Sincerely, Marla

    Liked by 1 person

  2. Well said. These match up with what I’ve learned throughout my forty-year journey with progressive, unpredictable neuro-muscular conditions. Too bad, I too often try to ignore it and want so badly to plan or spontaneously do something. I usually pay heavily for it. They are lessons I seem to need to re-learn at times. Keep up the good work.

    Liked by 1 person

    1. Thanks so much Carole. I too try to ignore my disease and always with avoidable consequences. Sometimes though I think we need to give ourselves permission to happily and “deliberately” push our boundaries to achieve and enjoy something that’s important to us. I’m learning to do that without feeling guilty about creating extra pain for myself when I do go above and beyond. Instead I just focus on how good it felt to do something different for a while. 😊💞

      Like

  3. This is a fantastic post! Not just acceptance but on seeing how this ‘new’ way of living can parallel your old life, how you can still find satisfaction and even joy and still live your values, just taking a different route (like with your fingers doing the walking on a keyboard at home, I love seeing it like that). Thank you for sharing Sam! x

    Liked by 1 person

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