In 2010 I was in my mid 40’s, at the height of my career as an Executive Manager in a major bank.
In April of 2010, I was getting ready to take 6 weeks long service leave to spend some quality time with my beautiful husband. We were going on a road trip, through South East Queensland down to the Hunter Valley in Northern NSW, and I was so looking forward to having a break.
On the way home I started feeling really unwell and I just couldn’t shake off an extreme tiredness, joint pain like I had never experienced and abdominal pain. My hands were so sore that even the slightest touch was excruciating. I couldn’t hold my husband’s hand or pick anything up. My hips were so painful walking normally was becoming difficult unless my husband supported me. We knew something was not right.
A Long Road Ahead
As soon as we got home we headed for my GP and a whole list of Specialist appointments followed. Long story short, 2 months later I was diagnosed with Rheumatoid Arthritis (RA), after being first diagnosed with Q fever, Ross River Virus and a list of other false positive diagnoses.
My body was not behaving normally and my Doctors and I were to discover, over the next 6 years, just how abnormal it actually was. I had no idea what lay ahead.
With RA medication on board, I continued to work for another 12 months before my body began to basically break down bit by bit. My last day in the office was Melbourne Cup Day 2011. I was trying to push through the day, getting ready to judge my Departments “Fashion on the Fields” competition, when my Personal Assistant found me in agony in the ladies bathroom and rang my husband to come and pick me up.
From that day my life was never to be the same again.
After urgent scans, more Specialist appointments and invasive procedures, I was diagnosed with a prolapsed rectum which refused to mend despite three attempts at conservative surgery between 2011 and 2013. By mid-2013 we knew we had no choice but to accept I needed a permanent stoma.
In November 2013 I officially medically retired (after being on Income Protection for two years and working from home as much as possible) and I became the “proud” owner of a permanent colostomy.
Up to this point it had been quite a journey with my medical team including a Clinical Immunologist, Colorectal Surgeon, Endocrinologist, Orthopaedic Surgeon, Gynaecologist, Ear Nose and Throat Specialist, Infectious Disease Specialist, Neurologist and Dermatologist, Gatroenterologist, Rheumatologist and an Opthamologist, all trying to work out what was causing my complex and quite rare health issues.
I had been called “special”, “unique”, “one of a kind” but really they all believed overall, aside from rheumatoid arthritis, I had a rare idiopathic disease (a disease of its own kind).
I have lost count of the number of times I have been hospitalised over the past 11 years. I have had 14 surgeries since October 2010, with the prospect of more ahead.
I thought Rheumatoid Arthritis and a permanent colostomy would be an end to what my body was going to challenge me with. I hoped back in 2013, I could settle comfortably into medical retirement with my husband, but I soon came to realise my life was going to be an ongoing medical adventure.
An Unexpected Surprise
In October 2014 my left femur broke spontaneously. Yes, all on its own, I didn’t fall from a great height or have a major car crash, which is apparently the type of accident I should have been involved in to have the strongest bone in my body break. Mine just broke as I was opening my bedroom door!
It is called a pathological break and my Specialists believe I have a rare genetic bone disease. My bones are extremely dense and marble like and my bone turnover is almost non-existent. We also now know my bones are dying and much of the soft tissue around my bones is also necrotic (dead tissue).
12 months after my left leg broke, my right femur was also showing signs of disease on MRI with bone marrow involvement, so a rod had to be inserted from hip to knee (as was done with my left femur) to prevent an imminent break. We didn’t need a repeat medical emergency like we had with my left femur break in 2014.
I am constantly dealing with multiple foot fractures and none of my broken bones in my legs or feet will fully heal. My bone pain is excruciating on a daily basis. My left femur, which snapped completely in two, is still broken nearly 7 years later and has been diagnosed as a non-union break. I have been permanently on two crutches or a walker since the femur broke and now also require a mobility scooter and power wheelchair outside of my home.
My Left Femur Break – 6th October 2014
I have a long and unknown journey ahead and surgery after surgery keeps me in a constant recovery state. My bone disease is now also attacking my spine and causing severe stenosis and nerve compression, particularly in the lumbar spine and cervical spine. This has resulted in two major lumbar spinal surgeries three months apart.
My spine is still unstable and the surgeries have not been successful. I need a spinal fusion with grafting, but the integrity of my bones is so questionable, my Orthopaedic team are fearful of severe complications and surgical failure.
As a result I am left to deal with extreme pain and disability.
I still remain hopeful we will eventually arrive at a more settled way of life, even if my prognosis is unknown and my disease progresses.
I have been approved for high level Care Packages which includes life long approval for Permanent Residential Care whenever I need it. I am so grateful for this provision and the peace of mind it brings, although my hope is to remain in my own home for as long as possible.
Finding Ways to Live with the Unknown
In 2015, I decided to start blogging to reach out to others, who have found themselves suddenly physically disabled, and medically retired from a normal way of life.
Despite my health issues I still choose to have a happy fulfilled life, different yes, but fulfilled all the same. Seven years ago I would have thought a stoma was the end of the world. Today I am so relieved to have a functioning bowel.
Ten years ago I was facing the fact rheumatoid arthritis was causing radical changes to my life, the biggest being saying goodbye to my Executive Management career and the team I led and loved. My company were so fantastic to me throughout the whole medical retirement process, which was such a blessing, and I remain forever grateful for their support.
Today medically retired, I’m on a permanent disability pension and my husband is my full time carer.
My original long term plan was to have a healthy retirement, full of travel and volunteering and fulfilling a lifelong goal of writing a book. I may not be able to have such an energetic retirement, my leg break and subsequent bone disease diagnosis has brought the travel idea to an end, but I am blessed I can still write.
I have recently signed a book publishing contract, which is so exciting. It will be my memoirs, interspersed with my tips and strategies, on how to live the best life possible with chronic illness.
I’ll have difficult days, like we all do, when plans and dreams are restricted by health but one thing I know, if I can focus on counting my blessings on those days, the clouds pass much more quickly.
My biggest blessing is my amazing husband who has walked this journey with me and stands side by side with me today. We have laughed and we have cried over the past seven years as each health episode has thrown up new challenges.
We have even managed to laugh at the unpredictability of my health. We can laugh though because we know life can be and is good, even if it is learning to live at a different pace and in a very different way from what is considered “normal”.
Despite all my body has thrown at me, I still have an overarching feeling of being “Chronically Content”
So, how on earth can I feel content, even happy, in the midst of all this?
What’s my secret?
The simple answer is I love my life. My health is just one part of it and chronic disease has actually brought chronic contentment in multiple areas of my life.
Let me share some of them with you:
- I spend quality time chatting and laughing with my husband every day,
- I spend quality time writing, something I love to do. I have this blog, “My Medical Musings”, I write articles for “The Mighty”.
- I have also published a book, “My Medical Musings, A Story of Love, Laughter Faith and Hope; Living with a Rare Disease”. The book is a collection of my most popular blog posts, with new content included as I share my memoirs. It has been a lifelong dream to write a book and I feel incredibly blessed for the opportunity, the love, support and encouragement from so many people.
- I also have a Podcast,
- I spend the majority of my day reaching out to others through my online Facebook forum, Medical Musings with Friends. Connection with people is so important for my overall well-being and Medical Musings with Friends forum gives as much to me as I give to its beautiful members,
- I get excited about any achievement in my life no matter how small. Making the bed each day and making it look pretty brings me joy….even if I mess it up an hour later as I have to collapse onto it in sheer exhaustion. I still did it and I feel I’ve achieved a goal.
- I don’t dwell on what I can’t do, I dwell on what I can do
- I have a strong faith in God. I see His hand on my life in so many remarkable ways…the main one being I’m “Chronically Content” despite my crazy health. My faith brings me a sense of peace in my darkest hour.
Whatever your chronic disease or grief circumstances, don’t let your happiness be defined by what has been taken away from you. Think about things which make you smile.
- You may love travel but health prevents it. Get travel DVDs or look at travel books or brochures and dream you’re there. It saves the effort of packing and unpacking so there’s an immediate bonus from my perspective.
- You may love to eat out but find cafes difficult to access. Take a drive in the car and park in a beautiful spot to have a picnic with your loved one or friend. I’ve done this with my husband many times and it’s been just a perfect date.
- Above all try not to worry about the “what if’s”. Life is too short to go there and when chronically ill, finding ways to be chronically content is a much better way to use your energy.
I hope and pray my story encourages others who are facing an uncertain future and change in life’s direction.
I hope it helps you to find the courage to not give up, but over time learn to accept a new way of life and be brave enough to share your own experiences.
I would love to hear others stories as they are all so precious and we can learn so much from each other so please feel free to drop me a line anytime.
“Don’t let your happiness depend on something you may lose” CS Lewis
Medical Musings with Friends
(The Ianni Children, teaching the “Breath Brake” technique)