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The Effect Living Moment to Moment Has Had on My Life With Chronic Illness

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I would have thought that being disabled, and pretty much housebound, life would go slowly. I’d have thought each day would drag and each hour would leave me wondering how to fill my time.

Ha… How wrong was I!! I can’t believe 2018 is nearly over.

What have I done with my year? What makes a chronic illness existence so busy?

As I pondered those questions I realized the answer lies in how I spend my moments, not necessarily my days.

I’ve adjusted to my new life by filling it with moments of purpose. In many regards I am working as hard as I was when I was actively employed enjoying a successful career.

My online forum has replaced my old work life. My days are full of beautiful people and amazing conversations, in a virtual sense rather than in the workplace. I have an admin team to care for and 1600 plus forum members to provide a much needed service to.

On top of that I blog, write, manage my health and help my husband care for our home. My health takes up a lot of time with appointments, procedures and surgeries and just overall pacing of all basic physical activities.

Put all that together and hours, days, weeks, months and quite clearly a whole year, just fly by.

As crazy as this may sound, I’m loving life.

I say crazy because I’m sure many people must think I should be curled up in a ball, rocking back and forth in a corner. I have considered it on really bad days but it’s just not me.

Broken bones due to my debilitating bone disease, rheumatoid arthritis and associated autoimmune issues, extreme fatigue and a stoma don’t bode well for a “loving life” campaign. But that’s just my flesh and bones. It’s not my soul. It’s not what really matters.

My heart still beats and my brain still works and I am so so grateful for that. Yes, life can be hard and many days out of the 365 per year are not pretty, but moments in those days are.

Moments when the pain meds kick in enough to let me write or be active on my forum. Moments when I can do something nice with or for my husband.

They are the moments that are strung together to make the year go fast. They are the moments that complete me. They are the moments that make me love life. They are the moments that cause me to push on and not give up.

This is life. This is my life. I only get one and it needs to matter.

It may not feel like it but troubles are momentary too.

When living with chronic disease it can so easily feel as if our flares and high pain levels are unrelenting. Believe me, I often feel like that. The pain is real, the disability is real.

However, the excruciating pain I suffer comes in waves. The pain is always high but I’ve adjusted to a moderate level of pain where I can function, in my restrictive way.

The excruciating pain lasts for moments. Sometimes too many moments strung together, but moments nonetheless.

If I think about my days in terms of moments, I can focus on the fact I will get moments when moderate pain allows me to write, to laugh, to listen, to participate in life to some degree.

The moments of severe pain and darkness will be outweighed by the lighter moments… every single time.

What about days when there are no light moments?

Yes, they do happen but in reality they are rare. Even when I’ve been in the hospital, post major surgery, there has still been something to make me smile. A caring nurse, seeing my husband walk through the door with a real coffee in hand or a decent cup of tea, these moments stand out to me.

These little moments of relief manage to squeeze their way into the dark days. We just have to look for them and hold onto them. They offer us hope that bigger, brighter moments are just around the corner.

If you really are feeling completely overwhelmed by your disabled and chronic illness life, it’s so important to seek help.

Professional counselors can help provide coping techniques and skills to help you live your best life possible.

It’s not about living in denial about the reality of the hard moments. By acknowledging those, we can learn to use them to absolutely savor the good moments.

Life then becomes precious, every single day.

I sometimes think I’m more alive now than when I was healthy, living a crazy rat race existence. I just ran from moment to moment and day to day in my old life and much of it is a blur as I look back.

As a new year approaches I won’t be making any great resolutions or setting any concrete plans. I have some rough idea of events and tasks which require some effort and thought, but timeframes need to be flexible.

I know there will be tough moments followed by good moments and that’s enough for me.

After all, life is like that in both sickness and in health. None of us are immune from the highs and the lows.

How we choose to live with them and through them, makes all the difference.

I know what I’m going to choose. I choose to live for moments of happiness, creativity, community, love and moderate pain. I choose to hold on to hope for bright moments to follow tough ones.

Rather than expecting a perfect life filled with halcyon days, I choose to love and cherish the moments of my life where I can engage with some of the activities I enjoy.

What will you choose?

Getty Image by ArtShotPhoto

Originally published: December 11, 2018
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