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 a fulfilled life despite uncertainty, pain and disappointment.
I have discovered a whole new level of patience over the past 9 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 that comes easy to me. I was always 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 that goal, as fast and as well as I possibly could.
So how did I become so patient? I learned quickly, once my health deteriorated, that 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 that wasn’t a smart way to live a new life.
I also learned that 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 that 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 the 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 that might be achieving 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 suit you.
Due to my disease and disabilities I am pretty much housebound so I have needed to find purpose at home. Starting my blog 5 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 to 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. That group has been going for 5 years now with over 1500 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 that time. I readjusted my expectations again. I kept blogging about my health journey and I remained volunteering with the not for profit organisation, as an administrator for one of their smaller online support groups. It’s a group with 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.
I felt 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 closed Facebook group.
So I created Medical Musings With Friends and the rest as they say is history. I can’t believe it turns out on the 14th January!
A Full And Fulfilled Life
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 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.
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.
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
If you would like to read a little more about my journey, here’s the link to My Story