I’m not afraid of storms, for I’m learning how to sail my ship.Louisa May Alcott (Author of “Little Women”) I always think we have a choice when faced with “storms of life”.We can bunker down and wait for the storm to pass, or we can continue to live, albeit with impediments, and find a way … Continue reading Sailing Through Storms
We all know how important it is to be validated. For those of us with rare diseases, or any undiagnosed chronic illness, being validated often means having a specific name for our diseases. Sometimes though there are diseases, recognised by the medical profession, that simply don't have names. They are often called "idiopathic" as they … Continue reading Why Is It Important Your Rare Disease Has A Name? ….It Gives You Validation!
February 28th is an incredibly important day, especially for those of us working hard to raise awareness about rare diseases. February 28th is the global Rare Disease Day. On my support forum, Medical Musings with Friends, I have many members with rare diseases. Some of these diseases have names, some are so rare they are … Continue reading World Rare Disease Day – February 28th (A Guest Post By Gina Baker)
We all make decisions every day. Big decisions, small decisions. Some we are aware of and some are just automatic. When I had reasonable health, I would spend my days making business and personal decisions without much effort. Some might have kept me awake at night but not many. I never had to think about … Continue reading The Most Important Decision When Living With Chronic Illness
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
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 Medical Musings 