July is my birthday month, and I’m very excited to announce I’m running a competition on my podcast and the blog to give away a copy of my book:

“My Medical Musings, A Story of Love Laughter Faith and Hope, Living With A Rare Disease “.

All you need to do is listen to a podcast episode and leave a review or comment on either Spotify for Podcasters, Apple Podcasts, or Audible.

If you listen through a different podcast app, please leave a review there, and just DM me to let me know, and I’ll still include you in the book giveaway competition.

There will be three episodes/posts throughout July, each giving an opportunity for you to enter the competition.

Here’s the link to the second e-book style Podcast episode…

Listen to the most recent episode of my podcast: Podcast/Blog Party Month – Episode 2 https://anchor.fm/my-medical-musings/episodes/PodcastBlog-Party-Month-Book-Giveaway-Competition—Episode-2-e26dr5i

If you are not a podcast listener, you can also leave a review in the comment section of this blog post, and you will be added to the competition draw at the end of the month!!

So, without further ado, here’s the second excerpt from my book:

Chapter Two

A Full And Fulfilled Chronic Illness Life

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 11 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 a new life.

I also learned patience brings a wonderful sense of peace. As expectations are realigned, 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 to accommodate your chronic illness needs, your friends, family and colleagues 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 others adjust to the changes you are making. It’s all a process and it takes time to achieve.

Always 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 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 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 resonate with 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 and support one person. I was always going to continue to write no matter what, because I love writing and have found it cathartic and a great distraction from pain. 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.

Dear Diary

Writing helps me make sense of all the challenges my health issues throw at me, something both my Specialists and I are battling to do!

During one of my many hospital admissions, one of my Doctors came into my room with a concerned look on his face and asked,

” Did you murder someone in a past life, because it doesn’t seem fair to me such a lovely lady should have to deal with so much”?

I don’t know about the lovely lady part, but he was right. It doesn’t make sense many, not just me, suffer from horrific chronic diseases. There is no rhyme or reason as to why one person has perfect health and another doesn’t.

So to think in terms of fair or unfair is not helpful.

In my mind to be proactive in the midst of the suffering is helpful.

This is where writing helps me, not only blogging but also private journaling.

Blogging is like my work, my new career. It’s a place to record “My Medical Musings” and share with others the coping mechanisms I have discovered through my own journey.

My focus is not only on my story when I blog. My story simply allows me to provide a platform to connect with others, who are looking for ways to effectively live with their own health challenges.

It’s a “public” style of writing, even though the content is of a personal nature.

Blogging is a layer of my story I’m comfortable to share through social media, linking with other bloggers and engaging with comments on my blog posts from my readers.

It satisfies my desire to help others. Helping people is what drives me to consistently blog.

The blogging world is a writing community and it’s wonderful to be a part of it, especially the chronic illness bloggers community.

However, my journal is private. It’s where I bear my soul. I tell my journal anything and everything. I write frequently but not regularly. Sometimes once a month, then maybe every week for a while or I might put it aside for six months. It’s where I go when I need to release how I really feel.

It captures my highest joys, my deepest hurts, my dreams, my hopes. It is healing.

There are no rules with journaling. You can write in any style you like. No one will edit it or comment on it. It doesn’t matter if it has spelling errors or illegible writing, especially if you use the old fashioned method of pen and a diary.

I love to use a journal book. You can draw in it, record favourite quotes, keep special cards or notes from friends to look back on when you need encouragement.

It is your own special world and it is a wonderful thing.

In this era of online sharing where nothing seems to be “off-limits”, it is so important to keep some essence of privacy. Some place where you can just shut the door on the noise of life and allow your innermost thoughts to be heard.

Journaling allows you to do that.

It’s like a form of prayer for me. Only God knows what’s in my journal, unless I choose to share it with someone else. That’s a precious, special thing.

You don’t even need to be a “Writer” to journal. It’s for anyone.

Buying a new journal could be a little treat to yourself, especially if the romantic appeal of handwriting in a book inspires your creativity.

If you prefer to use your phone or tablet, you can journal online. There are a number of great apps available to download.

As you open the first page of your journal and record the day and date, an opportunity awaits to express yourself like never before. An opportunity to find a sense of peace. An opportunity to start the process of emotional healing and well-being.

As we’ve experienced the COVID-19 global pandemic, including self isolation/lockdown, our minds and emotions have needed to comprehend the most surreal of circumstances.

Journaling is a healthy way to order our thoughts, to scream in words if we need to, or celebrate special moments.

We are all writers, some of us publically, but all of us can be private writers.

I hope you will join me in experiencing the joy of journaling, and find out for yourself just how healing it can be.

It can help you find your new purpose.

Volunteering

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, Arthritis Queensland, 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 forum has been going for nearly 7 years now, with over 1600 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 as they care for their beautiful children living with such a debilitating disease.

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 my own private Facebook group and, being a woman of action, “Medical Musings With Friends” was born.

Thanks to The Mighty promoting my forum, at the end of my first article they published, Medical Musings with Friends became a global group with 1100 members in its first month! It was definitely meant to be and continues to be one of my main purposes and privileges in 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 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.

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 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.

Becoming Abled

If we can stop looking at our disease as “unfair” and “cruel” and stop thinking “why me”, our outlook can change.

“Why me” can become “why not me”. Sickness is a part of life. Accepting it as your new reality, can help change your disabled world into an abled world.

Peace brings clarity of thought. Peace is the opposite of war. If we stop fighting against ourselves by accepting our new life, warts and all, peace can be invited into our lives.

When peace comes an unexpected healing can come. Not a physical healing, but it definitely helps with pain management and a greater sense of well-being.

The pain remains but our focus shifts. This is the key.

When we can find a place of peace and acceptance, we stop focusing on our diagnosis, treatments, cures, answers and we can start focusing on enjoyable life activities we are capable of.

The more we add non health related pastimes and purposes to our daily routine, the more our pain and disability become just a part of our life, rather than the whole of our lives.

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.

The next Podcast,/Blog Party Month episode will be published on the 21st July.

Until then, take care

Sam xx

My Podcast

If you would like an audible version of my blog, please check out my Podcast, Medical Musi ngs With Sam

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.