(This is an excerpt from Chapter Two of my book, My Medical Musings, A Story of Love, Laughter, Faith and Hope, available as an e-book or paperback through Amazon or ImagineWe Publishers. It also provides an update, as promised, to an earlier blog, “What Sam Did Next“)
How do you continue to live life to the full when your health limits everything you do?
How do you cope with waiting for a reprieve in symptoms when, the reality is, no reprieve is coming?
I’m not going to say there are easy answers to these questions because there definitely are not. It’s hard. It can be overwhelming to wake up day after day only to discover your legs and feet are still broken, your spine unstable, your fatigue is just as bad, if not worse than it was when you fell asleep the night before. A pile of medication is sitting on your bedside table staring at you alongside a glass of water. An immediate reminder all is not well.
Patience and Purpose.
I have found two things really help me live my best life possible, despite uncertainty, pain and disappointment.
I have discovered a whole new level of patience over the past 10 years, which has become the key to me living well with chronic illness.
Patience with my body. Patience with my medical team. Patience with people who struggle to understand what it’s like living with a chronic disease.
Patience is not something which comes easy to me. I have always been referred to as “instant Sam” by family and close friends. I like things to happen quickly. If I have a goal, I have always put 100% of my energy into achieving the goal, as fast and as well as I possibly could.
So how did I become so patient?
I learned quickly, once my health deteriorated, if I wanted to be involved in an activity I loved, slow and steady was the only way of doing it. If I rushed I would literally, physically fall in a heap. A lack of patience in the early days, quickly taught me it wasn’t a smart way to live my best life.
I also learned patience brings a wonderful sense of peace. As expectations are re-aligned, pressure is reduced. Giving yourself permission to live at the pace your body allows is amazingly freeing.
However only you can give yourself permission. It’s nice to have others support but ultimately, unless you allow yourself to adjust your life, it just won’t happen.
I also believe if you don’t adjust your life, others in your life won’t get the true picture of how much your health is affecting you. As a result of wearing an unrealistic “wellness mask” you are at risk of falling into a vicious circle of not feeling supported.
I think it’s really important to work out your limits and let others in your support circle know exactly what those limits are. They then have a clear picture of what they need to do to support you live your best life possible with your chronic disease.
Remember though to be patient while they adjust to the changes you are making. It’s all a process and it all takes time to achieve. Keep in mind your change in health is a change for everyone around you.
Discovering My Purpose
Once you have realigned expectations and discovered you can be patient with your new body, purpose is then so important.
We all need purpose in our life, no matter how large or small. For some it might be achieving specific goals, like reading an entire book series you’ve always wanted to read. If you are mobile and can get out of the house for a while, perhaps joining a craft group, a choir, or volunteering at a local charity might be on your list.
Due to my disease and disabilities I am pretty much housebound, so I have needed to find purpose at home. Starting my blog over 8 years ago was the beginning.
I didn’t just start it without thinking it through. I first completed an online blogging course through the Australian Writers Centre. It was my initial step towards what was going to open a whole new world to me. A world I really had no idea existed and I had no idea how far it would develop.
I was nervous about opening myself up to others. I write about deeply personal things, but I felt I needed to tell my story, and I hoped it would eventually reach others who were experiencing a similar journey.
I wasn’t interested in how many blog followers I had. I would have been happy to reach one person. I really wanted to just write because I love writing. I had previously (in my 20’s) studied freelance journalism and non fiction writing, so it was a long time love which I suddenly had time to explore.
I also had a deep desire to serve others. I knew I couldn’t volunteer outside of the home but I had been involved with a charitable organisation who had a very small web based support group for women with inflammatory arthritis. I decided to offer my time to help expand the group and transferred it onto Facebook for them. The group has been going for nearly 8 years now, with over 1900 members, and is an enormous support to those who belong to it.
I sadly had to step down as admin after 12 months, as my health deteriorated and I had a period of multiple surgeries and difficult recoveries. I didn’t completely lose my purpose though during this time. I readjusted my expectations again. I kept blogging about my health journey and I remained volunteering with Arthritis Queensland, as an administrator for one of their smaller online support groups. It’s a group with over 300 members, supporting parents who have children with Juvenile Idiopathic Arthritis. It’s heart wrenching, but so rewarding to facilitate a place for these parents, to connect through their grief and victories.
At the start of 2017, it was clear my disability was not going to improve, in fact it was worsening. I found I had more time on my hands and I felt I needed more purpose. My blog was expanding slowly and I began writing some articles for The Mighty. I was satisfying my writing desire but I wasn’t fully satisfying my desire to serve. I could have returned to my previous online volunteer admin role but there were others able to serve there now.
I decided it would be good to try and connect with people who had rare and complex diseases. I had no idea what to do with such a crazy thought, but I had a moment of thinking there is no harm trying to start a private Facebook group.
So I created Medical Musings With Friends and the rest as they say is history.
My adventures didn’t stop there. As my blog following grew, and given the volume of content I had written over the years, in 2020 I was approached by Imaginewe Publishers to see if I was interested in turning my blog into my memoirs. My lifelong dream of writing a book was suddenly within reach.
I grabbed the opportunity and within 12 months “My Medical Musings, A Story of Love, Laughter, Faith and Hope, was published. I’ve even just received my first royalty cheque!
In the midst of it all, the natural addition was a Podcast. So a year ago I created Medical Musings With Sam which now has over 50 episodes recorded.
What Did Sam Do Next….and Why?
Last week I wrote a blog post, What Sam Did Next. I was taking time out to look at all my priorities and decide what to continue and what to stop. Part of the process was to decide if I should take up new opportunities.
Thanks to living with patience and purpose, I am living an incredibly full life from my lounge room, my bedroom and my back patio. I connect with people from all over the world and provide a service where others can feel supported, where they can share their stories, their blogs, their vlogs, their articles.
A place where they can make new friends and a place where they are not judged for what they can’t do, but celebrated for what they can do, despite their diseases. My forum and volunteering work will always continue while I’m able. I love it.
I’m continuing to write but mostly through my blog rather than for other publications. There may even be a second book in the future. I can’t imagine not writing.
I have added a couple of new commitments. I just accepted the offer to work as a Freelance Editor for my publisher and a blog content creator.
I’m sure some readers may want to ask why am I’m doing so much when I’m medically retired? The answer is simple. I’m only 57 and if I wasn’t disabled physically by disease, I would still be happily working full time. I love working, just as others might love travelling.
So, I needed to find a way to recreate a working life that is manageable, flexible and can be changed at a moment’s notice. I feel so blessed that I’ve been able to achieve this. All the work I do is using my brain, not my body and that’s why it works for me.
The “working activities” in my life are also wonderful pain management therapy tools. The more I focus my brain on the things I enjoy, the less it focuses on the constant high pain levels.
A Few Tips to Help You on Your Journey
If you are starting out on your chronic illness journey, or perhaps have been struggling to adapt with the changes it has brought to your life, take a breath and be still for a while.
- Be patient with yourself.
- Take time to review how you are trying to live and how you need to be living.
- Slowly start to make the necessary changes that allow you to live a life where you are patient with your new circumstances.
- Share your thoughts and the changes you need to make with someone you love and trust.
- As you remove things from your life that you can no longer do, replace them with things you can do.
- Find your new purpose, explore it, dream about it and patiently put it in place.
Life with chronic illness and disabilities is not over, even if it may feel like it is at the moment. With time, it is possible to begin living again.
With patience and purpose your new friends, a different, full and fulfilled life can slowly emerge. You will soon be living your best life!
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.
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
I also write @ Blogs by Christian Women