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
My beautiful Dad passed away 5 months ago. The initial weeks after his passing saw me encompassed in raw grief. The kind of grief constantly creeping up on you, and opening the flood gate of tears, when you least expect it. The kind of grief where you grapple to make sense of it all. When you … Continue reading “Good Grief!”
Every now and again it’s really good to stop and take stock. Stress is the last thing those of us with Chronic Illness need. It only enhances our pain and symptoms. Time To Step Aside For A While As my readers know my health continues to deteriorate and as a result I'm incredibly exhausted. I … Continue reading Stepping Aside For September
Life isn't always fun. It will always have highs and lows. Times when we are ecstatic. Times when we are happy. Times when we are content. Times when we are melancholy. Times when we are bored. Times when we just have to deal with drudgery. I'm sitting in the "dealing with drudgery" category at the … Continue reading Dealing With Daily Drudgery
One of the things I have always loved is Interior Design. After working crazy hours, when I was able to work, I would like nothing better than to spend the weekend at home. It's always been my happy place. As a young girl I loved creating a new look in my bedroom regularly, using different … Continue reading Interior “Disability” Design
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!