I would have thought 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 and dare I say it….so fulfilled and contented?
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 amazing online admin team as my colleagues, and over 1800 forum members from around the world, providing a community of genuine care and understanding for others with chronic illness.
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.
All this combined and hours, days, weeks, months and years, 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 crippling bone disease, rheumatoid arthritis and associated autoimmune issues, extreme fatigue and a stoma, don’t bode well for a “loving life” campaign. Plus I also have a pending diagnosis of “non- hodgkins lymphoma”. But this is just my flesh and bones. It’s not my soul. It’s not what really matters.
My heart still beats, my brain still works and I am so grateful.
Taking Life Moment by Moment
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 medication kicks in enough to let me write or be active on my forum. Moments when I can do something nice with, or for, my husband.
Moments when I can eat a lovely meal and watch a favourite TV show or movie.
Moments when I actively volunteer online for Arthritis Queensland and our church.
Moments when I chat live with family and friends across Australia and the UK on WhatsAp, Messenger or Facebook or have a video call.
Moments when I ring my Aunty in the UK and we share all that’s happening in our lives.
Rare moments when I get out with my husband for a car drive in the country, or a coffee at a cafe.
These are the moments strung together to make the year go fast. These are the moments which complete me. These are the moments that make me love life. These are the moments encouraging me to push on and not give up.
This is a picture of a chronically ill contented life. This is my life. I only get one and it needs to matter.
Troubles Are Momentary Too
"For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all." 2 Corinthians 4:17 (NIV)
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 this way. 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 or a severe bone disease flare, 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. As I’ve accepted my chronic illness diagnosis, and consequential life changes, good moments are more than enough for me. They mean so much and are so precious.
It’s important to keep perspective. Life is similar in both sickness and in health. None of us are immune from the highs and the lows. A healthy person doesn’t necessarily have a happy and fulfilled life.
How we choose to live with the tough moments 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?
Medical Musings with Friends
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.
My book “My Medical Musings”, is published by Imaginewe Publishers and available now to purchase as a paperback or e-book.
Here are the links to online retailers if you would like to purchase the book:
If you would like an audible version of my blog, please check out my Podcast, Medical Musings With Sam
I’m also a Contributor at “The Mighty”. You can check out my published articles at My Author Page