My Latest Podcast episode is finally recorded... It's been a while between episodes but I've finally found time to record one!!As my book "My Medical Musings" is set to officially launch on May 20th, I share with you my excitement at achieving a lifelong dream of becoming an Author....and more importantly I encourage my listeners … Continue reading My Latest Podcast…A Dream Realised…I’m An Author!
Category: Rare Disease
Sailing Through Storms
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
Why Is It Important Your Rare Disease Has A Name? ….It Gives You Validation!
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!
World Rare Disease Day – February 28th (A Guest Post By Gina Baker)
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)
The Most Important Decision When Living With Chronic Illness
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
Have Yourself A Merry Little “Chronic” Christmas
As Christmas Day fast approaches I imagine most of us, in the chronic illness community, are musing about what we want to realistically achieve over the holiday period. For those of us with Chronic Disease it can be an incredibly overwhelming time. Just trying to be happy for others, when your body is screaming at … Continue reading Have Yourself A Merry Little “Chronic” Christmas
Stoic or Stupid?
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?
Decking The Halls With Comfort And Joy
“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
One Step, Two Steps…..Will There Be A Third?
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?
Overwhelmed and Under Prepared
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