I'm a blogger, a writer and founder of online support Group, Medical Musings With Friends. Before becoming chronically ill, with a rare bone disease, I was an Executive Manager with a passion for change management, coaching and developing my team. Medical Musings With Sam is all about connecting with others, who are trying to live well with chronic illness, in the midst of difficult challenges and hurdles. Come on a journey with me as I share my experience of living a life of faith and hope with my disease.
This week on my forum Medical Musings with Friends , I posted a segment called “Any Questions?”
I wanted to invite my forum members to ask me anything about my life, my disease, my writing etc. It was an open book kind of segment.
The recurring question, or theme to the questions, was; “how do you manage to write when you are in extreme pain?”Another recurring question was; “How do you cope with the stress and anxiety of pain and disease?”One of my forum members asked me; “how do you come up with writing ideas and do you plan your blog posts? “
I was also asked; ” Did you write before you were diagnosed with a chronic disease?”A fun question asked was; “Sam, if you could be a child again with a million possibilities for a career, country to live etc what would it be??? It has to be different to your actual life story so far! There were a few more questions but on this Podcast I end with this one; “What’s one tip you would share with the rest of us with chronic disease?”
Should I sound “sick” on the phone? Should I dress as if I had just got out of bed or don’t care about my appearance? I have severe pain and fatigue and sometimes I do lose my voice as a result, but generally I can talk. I often look drained throughout the day but if I’m seeing someone a lot of planning has happened prior to seeing them to ensure my pain meds are at their maximum effectiveness. Why would I want to sound terrible or look dishevelled if I’m able to do?When we have chronic illness, our minds are quickly programmed to think about all the things we can no longer do.
Don’t get me wrong, there is lots we can’t do when living with a chronic disease. My list sometimes seems endless and can cause me to feel as if my disease is in total control.
Is it though? Or am I at risk of allowing it to take over more than it should?
I ask myself this question constantly.
I don’t want to be a prisoner to my disease. I want to scale whatever heights I can safely push, and ultimately I’m the only one who can decide my limits.
If I was ever going to accept my change in life circumstances, I needed to start with changing my self talk chat lines.
No longer could I talk to myself as if I could conquer all. I could and can conquer a lot, but definitely not everything. No mind over matter, no cheerleading squads, no pushing through despite pain, is going to be suffice to achieve goals, like basic daily housework.
Should I just give up? No, it’s not in my DNA to give up but it is in my DNA to find solutions. I might have to give up my perfectionism but I can still hang on to my “problem solving” passion.
It all starts with self talk. Not the kind I used in the past but a new kind. I’ve created, new and appropriate, self talk chronic illness chat lines.
This story is all about an ordinary day becoming just a little extraordinary.I woke up this morning with no great expectations of what my day would hold. I had no plans, no appointments and was not unhappy about what many would consider a boring day ahead.
My day started like any other.
Sometimes the path ahead in life can seem a little unclear.
Sometimes we are faced with a range of life choices, almost too many, which often complicate matters and require a great deal of thought….too much thought!!
Sometimes we have limited choices, none of which are particularly helpful, so instead of moving forward we feel paralysed.
Add in chronic illness, and the restrictions often surrounding our diseases, complications are taken to a whole new level when we are faced with which path to take.
So how do we deal with forks in the road, a change of direction, a smorgasbord of opportunities?
There are times I yearn to write but words fail me.
Is it because I am overthinking?
Is it because I’m too tired and in too much pain?
Or is it because if I wrote what I needed to write, it may be too raw, too much for my readers and even too much for me?
While tiredness and pain definitely impact my writing ability, I think what is stopping me today is my need to write straight from my heart, however it might unfold.
A new year awaits. Will it be a good year, a difficult year, a happy year, a sad year?
One thing is certain, none of us really know.
This time last year, none of us knew how challenging 2020 would be. I doubt a rampant, infectious virus, creating a global pandemic, was forefront on our minds. The year has read more like a movie script rather than real life. The kind of script you feel relieved is fiction.
I love this quote from Martin Luther King Jnr;
“You don’t have to see the whole staircase, you just have to take the first step”
That’s it! I just need to step into the 1st January 2021 and take each day one at a time, step by step.
The details, the plans, the hopes, dreams, twists and turns will unravel as I go.
Every now and again it’s really good to stop and take stock.
The end of the year, and the lead up to Christmas, is a perfect time to let go of a few things and make some space to slow down a little.
So, I thought I would lead by example and take a step back from Blogging, Writing and Podcasting until after Christmas.
I have a “Now or Never” philopsophy to life that sometimes gets me into trouble.
Well, let’s face it….always gets me into trouble!
Living with a physical progressive disability involves a lot of pain, lack of mobility and extreme fatigue every day. This kind of disease is constant. It doesn’t ebb and flow with flares. It’s there all the time, slowly worsening.
The sensible approach to this kind of chronic illness life is to pace all activities, listen to your body and lower all expectations.
Generally I do. I advocate pacing, live and breathe it actually. Partly as I don’t have a choice, plus I know it helps enormously with pain management.
The problem is, despite living with a severe disability for 5 years, my mind still seems to disconnect from my body on occasion. I can still visualize myself jumping out of my chair and cleaning up the kitchen, dusting the shutters, wiping down the bathroom tiles, making the bed, getting dressed, doing hair and makeup and looking like “little Miss Perfect” with all the ease of a healthy 18 year old.
So how do I manage a Pushing and Pacing Approach as a person with a severe physical disability.......It's not easy but it is possible!
Tis the season to be jolly, fa la la la la, la la la la” 🎵🎶
Is it? Do you feel jolly or do you feel exhausted, stressed?
Do you feel overwhelmed by your chronic illness, which refuses to understand Christmas is fast approaching, and you really could do with feeling healthy for the festive season?
We can dream can’t we of halcyon days, but the reality is our chronic diseases are generally here to stay. So we need to find new ways to live well during a holly, jolly Christmas time.
Let me share with you, some of my simple ideas for creating Comfort and Joy at Christmas at home, despite chronic illness.
Perhaps COVID is giving the world a Christmas gift. The gift of time. Time to stop. Time to get out of the rat race for a season. Time to reconnect with what really matters in life. November is a great time to set your realistic Christmas expectations. You can then head into this “most wonderful time of the year”, relaxed and ready to enjoy a very special and achievable Christmas…..one that’s just right for you, despite COVID, despite chronic illness.
You never know, this may be your best Christmas ever!
How would you answer the question "What if?"
"What if my health gets worse in the future?"
"What if I run out of money?"
What if I contract COVID-19?
A what if question tends to ignite our anxieties first, taking us on a scary roller-coaster ride of emotions.
Asking "what if” can be paralyzing, even soul destroying. It can cause you to worry about a future scenario which may never happen. It can cause you to miss out on the joys in your life today.
When you flip a “what if” question into a “what is” statement, your
life can change for the better.
Pain needs to become my friend so I can live as well as possible with it. A strange concept I know. How can pain be your friend?Will pain be my best friend? Of course not but it doesn’t have to be my enemy, and this is what I mean by accepting pain as my friend. I don’t want to make it worse than it is. If I stop looking at it as an enemy, it reduces its power over me. It disarms it!
I'm really excited today as I'm joined by a another beautiful
friend ,with a twist. So what do I mean by a twist? Well,
today’s guest is not only one of my best friends, she’s also my
daughter in law. Shannon is the partner of my husband’s
youngest son and the Mum of our gorgeous 3 year old
Shannon also has an incredible story of experiencing the
sudden onset of a very scary disease and fighting her way
through to remission. I know our listeners will be truly
inspired by Shannon’s resilience and determination to
The other twist to our relationship is we have never met in
person. My health prevents me from travelling, Shannon was
battling her own health issues as we were beginning to form
our friendship and then our Grandson came into the picture ,
plus of course COVID-19 restrictions.
Despite not ever meeting in person, we have developed the
most beautiful relationship through daily messages, videos
etc. I can’t imagine my life without Shannon in it. She has
shared every step of our Grandson’s life and my husband and
I couldn’t feel more connected to our family. This is a credit
to Shannon and shows her beautiful nature to care for others
deeply. She is a special lady and this is an interview not to be missed, as Shannon openly, candidly and with humour, shares the highs and lows of facing, and overcoming, one of the biggest battles in her life.
Memories are strange things. They can arrive when you least expect them.
They can bring amazing joy or they can startle you.
Life has an amazing way of evolving, reinventing itself, no matter our circumstances, especially if we don’t lose sight of who we are.
Chronic Illness is just another chapter of my life. It’s not my whole life. I am still a Leader. I always will be and I will always want to care, coach and nuture others. Chronic Illness hasn’t taken my passion, my calling away. It has just re-directed it.
I’m not talking about the weather, it is the most glorious day outside. I'm talking about clearing a foggy brain and musing about my future. I need to refuel.
I need to reassess.
I need to revise my priorities.
So I’m taking some time to muse with my 3 R strategy…..
“ Recover, Reassess, Revise”….. actually maybe 4 R’s.
“RETURN….with new purpose and vision.
I'm really excited today as I'm joined by a dear friend and co-administrator of my online support forum, the amazing, vivacious and very down to earth, Nik. Nik has lived with severe Lupus from an early age, and later in life was also diagnosed with Rheumatoid Arthritis. Her story is definitely one to be shared and I know you will be both inspired and motivated by Nik. I really hope you enjoy this first interview on my Podcast.
You know how it feels to be watching a really sad movie, or reading an emotionally charged book, and you just need a break from it…..well, at the moment, I feel the same writing and talking about chronic illness.
In particular, I’m sick of my own sickness story.
I need to push pause, change the channel, read another book.
Not forever, just for a moment.
I’m clearly having a case of “Chronic Illness Overload” and I’m pretty sure I’m not alone.
So I need to solve this if I’m going to be effective in my desire to help others and not lose myself in a chronic illness cavern.
If you have travelled a complex chronic illness journey, I’d encourage each of you to record your voice. Tell your own health journey story. You don’t have to share it. It can be just for you.
It will likely be an emotional journey for you too. Don’t be surprised if the tears flow. Let them. Its healing.
If we can look back, we can look forward. We can see how far we’ve come. We can see how strong we’ve been. We can see how we were able to overcome each and every hurdle when, at the time, we thought we never would.
Every life, every person has their own story. It’s never simple. Even when someone appears to have everything and have it all together, they will still have layers of untold stories. If you are faced with animosity or misunderstanding from someone as you go about your daily life, try to stay calm and think about what might be going on in their lives. Ask them if they are ok? It’s the perfect starting point.
It’s amazing how conversations between two strangers, or friends and family, can evolve, full of genuine understanding, when we decide to turn our focus to caring for the other person.
Years ago, when I was much younger, 22 to be precise, I was involved in the restoration of a historic church building. It had been left derelict for years. To see it returned to its original glory,as a place of worship, was amazing. At the end of the day I would stand in the church, all on my own, and sing out loud my favorite hymn:
"Tis so sweet to trust in Jesus,
Just to take Him at His Word;
Just to rest upon His promise,
And to know, Thus saith the Lord!”
As I sang that song with complete faith, believing God would be with me every step of my life, I had no idea what I would be facing 26 years later. I sang those words with such conviction, not realising they would have even more meaning to me as I lost my mobility, my career, and my life as I knew it on so many levels. This is my story of faith, this is my song!
When we think of healing, generally we think of getting better. We expect a person no longer has their disease.
Healing can absolutely come in this form and it’s something to be celebrated when it does.
What about diseases with no cure and no treatment? As a Christian I believe God can heal and does completely heal some people of all kinds of diseases.
Why some and not others? I don't have all the answers but I do think it's because healing can come in many forms, and can sometimes be missed if we are expecting it in a particular package. In this episode, I'll try and explain what I mean.
While I can’t organise what my body decides to do in terms of my health, I can be organised with managing the consequences, from prescription management, doctors appointments, regular testing reminders etc.
The key though I think, to staying on top of a complex illness, is building a really good working relationship with your medical team .If nothing else, remember this last point……you are employing your Doctors. You are the Boss!
Sometimes, despite our own needs, we need to take off our “Chronic Illness Hat” and put on our “Carer’s Hat”.
So what does that mean? How can we when our disease is all-consuming?
I’ve found a number of simple ways, over the past five years, to let my husband know I appreciate him, by creating opportunities to become his “Carer” at times during each day.
My tips are designed to help you think about what you can do to support your Carer. In what ways can you become their Carer each day?
A story like this should start something like…
It was an ordinary day…..
The day my femur broke was anything but ordinary. It was supposed to be a day of celebration and excitement and it certainly was heading in the right direction.
Every now and again I allow my mind to return to that day. To remember, to ponder about the circumstances surrounding that moment. It has its own story and it’s about time I told it!
Grab a Cuppa, Get Comfy…
It’s not a short story so if you are interested in listening definitely make a cuppa or pour your favourite drink and find a comfy chair.
So many twists, turns, tears, complications, plus a happy ending! This is the full story of why I have a permanent colostomy and my medical retirement journey.
I stare in the mirror in disbelief. I have to believe it though. It’s real. Not a matter of maybe it’s thinning or a worry about going bald.
It’s here, its happening to me. I’m not reading it in a text book. I’m looking at it on my head.
You know what? I don’t like it. Not for one minute. I’m being brutally honest because I’m pretty sure 95% of women would feel the same.
I think hair loss does matter, even if it doesn’t. It is really important to feel we are looking the best we possibly can, especially when health is compromised. So what's the solution? Let me share my hairloss journey with you and maybe, together, we can work it all out!
How do we manage living with chronic diseases and find ways to adjust to the physical changes accompanying them? How can we embrace our new image when we really would prefer to have a slighty better version? If your weight gain or weight loss is outside of your control, the time has come to embrace the new you. Join me in this episode as I share with you my "Embracing The New Me" plan. I hope I can help you realise just how beautiful you are.
You would be forgiven for thinking this is a Valentine’s Day post given the title I’ve chosen. Please rest assured it’s not.
It’s a continuation of my musings from my last episode, about acceptance being the gateway to a new life. Acceptance is not a sad resignation, it’s the pathway to peace, happiness and freedom from prolonged grief.
I have a particular grief model I liked to use when I worked as a Change Management Consultant. It’s a little less clinical I think than some models. It’s called the “5 G’s of Change” and in this Podcast episode, I'll share what those 5 G's are all about and step you through my own grief/loss process.
A friend recently posted a question in a Facebook Group, about ways to gain freedom in life, so you can choose how you want to live it.
“What has most helped you to gain freedom in your life to choose exactly how you want to live it?”.
My response was one word.
Of course I had to follow through with a short sentence because I really can’t stop at one word!
Acceptance brings me peace and freedom.
After posting my response, I pondered about whether acceptance was just a state of resigning myself to living with the shackles of my chronic disease. Or was it more than that?
When we live with chronic illness, the concept of continuous improvement seems almost ridiculous doesn’t it.
But is it?
Our lives, while significantly impacted by our diseases, don’t need to be completely dictated by them. We can make changes which will catapult us into a new future. We can see our new circumstances as a time of opportunity, rather than a time of retreat and despair.
Not long before I realised I had little choice but to listen to my body and medically retire, I was asked to speak at a Women of Influence networking breakfast on the Gold Coast, Queensland.
A few months prior I had been awarded “Leader of the Year” by the Bank where I was working and my speaking invitation was on the back of this award.
My career was at an all time high. I have often reflected, in some regards it was terrible timing having to say goodbye to it all but I was leaving with so many wonderful memories. Maybe there was no better time to walk away.
Here I share my Leadership style and a little bit more of what I was doing in my working life prior to medically retiring and starting my blog, my support forum and my Podcast!
Ok, so the title probably sounds a little more dramatic than where I’m going with this…..but maybe not!!
My regular listeners will know I generally have a positive outlook on life, despite my disabling pain and crazy bone disease.
Every now and again though, I wake up to a “Chronic Illness Catastrophe Day”. In this episode I'm sharing my 3 day strategy, to survive the onslaught of a disease flare, and hopefully begin to see the light at the end of the tunnel.
Why do we say we are good when our chronic illness is flaring or we are in so much pain we can't breathe? I could hear these words spouting out of my mouth as I answered the phone...
”I’m good, how are you”
. I could feel myself screaming internally……”No, you’re not good. You’re far from good. You can hardly breath from pain and you can’t move”. The really stupid thing is my caller knew I wasn’t ok. She’s my Occupational Therapist. There was no need for me to put on a brave front. No need to pretend all was well.
So, why? Why did I do it? Here's my attempt at trying to work it all out!
Those in the disabled and chronic illness community often have a “waiting list” which seems never-ending, with or without a global pandemic.
Waiting requires us to dig deep to cope, now more than ever. It’s a difficult time for everyone at the moment. The freedom to do as we like, when we like, has been snatched from us thanks to COVID-19 pandemic. For many people adjusting to this new norm, of being in a permanent state of waiting, life is now almost unbearable.
As we enter a new world, dictated to us by COVID-19, my chronic illness life and the lives of so many disabled with chronic disease, may now be better understood. I want to reassure everyone, in particular those who are living with severe chronic illness, a fulfilled and happy life can be found in the confines of your home.
It happens to all of us with chronic disease. We look at our calendar and see an appointment looming in the future. It offers such promise. We feel a little excited at the prospect of what may come from it.
Hope. It offers hope.
Specialist appointments are par for the course when living with any kind of ongoing illness. We need to develop coping strategies to help us through the difficult ones, as you can guarantee they will happen.
A physically active life is now no longer possible due to my chronic diseases and disability. The life within my phone opens a whole world for me that is exciting. So many Pros but are their any Cons to consider?
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? In this episode, I share how I have lost so much through chronic illness, but have found ways to reinvent my life into a full and fulfilled one, thanks to a little patience and a lot of purpose!
What better way to start my Podcast than to tell a story. This is not just any story. This is my deeply personal story, of being diagnosed with a range of diseases, culminating in a rare bone disease diagnosis. It's my story of transitioning from enjoying a successful career as an Executive Manager in a major bank, to suddenly living with a crippled body due to the onset of my disease. It's a story about finding a new and different way to live a fulfilled life, with the reality of constant unknowns being around every corner. It's a story of hope and faith, love, tears and laughter. I am sharing it in the hope of reaching out to others, who find themselves facing an uncertain future and need to hear there is a way to overcome the insurmountable.