Loving “Moments” Of My Chronic Illness Life

I would have thought that being disabled, and 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 !!

How is it days, weeks, months and even years keep speeding by?

What have I done to make this happen? What makes a chronic illness existence so busy?

As I pondered these questions I realised 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 now as I was when I was actively employed and 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 years, just fly by.


Loving Life

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 crippling 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.

Moment by Moment

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.

Troubles Are Momentary Too

2 Corinthians 4:17 (NIV)

For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.

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 they are rare. Even when I’ve been in hospital, post major surgery, there has still been something to make me smile. A caring nurse, or 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 counsellors can help provide coping techniques and skills to assist you live your best life possible.

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


No Concrete Plans

As each new day or week approaches I won’t be 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.

Afterall, 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?

Sam xx

If you’re looking for genuine support, care, understanding & 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 & 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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10 thoughts on “Loving “Moments” Of My Chronic Illness Life

  1. Making plans pretty much goes out the window for me, too. What I’m finding more and more is how I’m not doing things that are meaningful. Well, I do a little as my blog is important to me and keeping up with other bloggers and emails, but mostly it’s routine stuff, catching up, and using the limited energy I have to focus on the more mundane things that can be ticked off to do lists. It’s creativity, enjoyment of spontaneity, lighter things that I want to do more of. I need to take a leaf out of your book with “filling it with moments of purpose”. You’ve balanced this post so well in acknowledging the dark times and when it’s a struggle to find the positives or love the situation and your life, and you’ve made this incredibly empowering and uplifting. Thank you for sharing  ♥

    Liked by 1 person

    1. Thanks so much Caz. I think you do an amazing work in the chronic illness community. We’d all be lost without you. I so admire your commitment to replying to others blog posts and your genuine care. You are a very special lady. Thanks for sharing your beautiful insights and experiences. Lots of love x

      Liked by 1 person

  2. A wonderful read and really spoke to me. I was so used to managing other people’s lives as a support worker and then a manager in the disability field that it took ages to just chill and enjoy each moment of my day without constantly thinking and planning. Just enjoy. Thanks Sam, spoke to my heart. 💜

    Liked by 1 person

  3. Sam, most days are fine and I can fill them.
    Some days like today there is a lot of pain but also I feel like I am not doing anything or enough. I am feeling Ruffley and a little lost today.
    I know it will pass and tomorrow is a new day. Thanks for your words today as they were really timely . Blessings 💜

    Liked by 1 person

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