A Life Of Love, Laughter, Faith And Hope, As I Learn To Live Again With A Rare Disease
I was once called "Stoic" when I was working, because of the way I got on with my chronic health issues without fuss. I was always cheerful, smiling and putting others first. I kept working full time with this stoic attitude and nature, until my body physically would no longer let me. Even with a … Continue reading Stoic or Stupid?
“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? … Continue reading Decking The Halls With Comfort And Joy
Some dates are forever etched in our memories. I have a few but one is a day I will never forget October 6th 2014. It was the day my femur broke. It was a life changing day. A day that would start me on a journey with a rare bone disease, so rare that even Specialists … Continue reading One Step, Two Steps…..Will There Be A Third?
On the 14th October 2021, after 5 weeks bed bound in hospital, due to my “acute” spinal collapse and bone disease progression, I was finally allowed home. I was sent home via ambulance as my condition hadn't improved. I still couldn't sit or stand for more than 2 minutes at a time. Walking with a … Continue reading Overwhelmed and Under Prepared
Some challenges in life hit us so hard, as we never saw them coming. Such challenges don't allow us the luxury of preparing ahead of time. They give no warning. They simply arrive! My "acute" spinal collapse , would prove to be one of the hardest challenges I have ever faced, and I've documented a … Continue reading Hard Work In Hospital
It was 3am Tuesday morning, 7th September, 2021. I desperately needed to go to the bathroom, so I rolled out of bed, the way physiotherapists had always shown me to do. I reached for my awaiting crutch and made it to the ensuite, not without pain, with my usual pain. I got back into bed … Continue reading An Acute Life Changing Chapter
One of my Facebook Forum members, Gina Baker, shared her story recently of living with Mitochondrial Disease. I was so glad she did as I knew very little about it and having a rare disease of my own, I am very keen to raise awareness of other rare diseases. I asked Gina if she would … Continue reading Shining The Light On Mitochondrial Disease
A week ago I had yet another spinal MRI, my second in three months. Something new happened on the left side of my lumbar spine a few weeks ago, which caused a massive increase in my disability. I can no longer stand for more than 5 or 10 mins at a time, even using aides, … Continue reading An Honest Chat With My Specialist….It Just Can’t Be Fixed!
Pain can’t just be ignored. Disease can’t just be ignored. People with disease and pain can’t just be forgotten. I’m not alone in suffering horrific daily pain. So many in society struggle every day. Some manage to work or interact with the wider community in some way. Others like me, live a permanently reclusive life … Continue reading A Peek Through My Window Of Pain
When you've lived with Chronic Illness for a number of years, at some point, you adjust to a new way of living. You eventually find a new norm. While you might expect a few highs, lows and some disease flares along the way, generally life evolves into a settled and comfortable pattern. Until it suddenly, … Continue reading “Would You Like A Second Opinion?”… Surreal And Scary!
My Medical Musings 