Ultimately, it doesn’t matter what day it is.It matters that I make the most of every single day and make the moments within the day count. It matters that I don’t waste time being discontent about my circumstances.
Category: Rare Disease
Just Treading Water
As a patient advocate, I am often called, inspiring, motivating, and full of strength despite my adversities. The truth is that most days, I am just treading water.
A Messy Easter
For someone with a body failing at every opportunity, the joy and hope Easter offers is one day I will have a new life in heaven and a new body. Imagine no more sorrow or pain. How beautiful and what amazing grace to receive such a gift. At Christmas, we so easily celebrate the birth … Continue reading A Messy Easter
Taking Time to Reflect
Turning off Netflix and listening to the silence filling the room, can be so relaxing. Suddenly the birds outside can be heard tweeting, rather than Twitter chirping at you with a notification on your phone.
A New Year Promise…Hope In The Midst of Delight and Despair
“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29 v 11 ( New International Version) I love this verse from the Bible. I can’t think of a better verse to read and muse on as we … Continue reading A New Year Promise…Hope In The Midst of Delight and Despair
What To Do When You Don’t Know What To Do!
(Including a Health Update) Sometimes the path ahead in life can seem a little unclear. Sometimes we are faced with a range of life choices, almost too many, which often complicate matters and require a great deal of thought….too much thought!! Sometimes we have limited choices, none of which are particularly helpful, so instead of … Continue reading What To Do When You Don’t Know What To Do!
A Year Later…One Step, Two Steps…Will There Be A Third?
Some dates are forever etched in our memories. I have a few but there are two I will never forget. October 6th 2014 is the first. 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 … Continue reading A Year Later…One Step, Two Steps…Will There Be A Third?
Can You Have A Chronic Illness And A “To Do List”?
How many times have you written a "To Do List" this week?How many times have you looked at the list and felt like it's an impossible dream?How many times have you felt useless because you've only ticked off a few items?How many times have you looked at the list and felt like it's been taunting … Continue reading Can You Have A Chronic Illness And A “To Do List”?
Seize The Day
This week I celebrated my 57th birthday! I wasn't going to reveal my age but then I thought, "wow I'm 57....I made it to 57". So with that thought I realised I should shout it from the mountain top. My health has not been kind for the past 15 years and on a few occasions … Continue reading Seize The Day
Living In Limbo
Life isn’t always straight forward. A bit of a cliche I know, but it’s so true!6 years ago I sat in pain with 2 broken legs, recovering from 2 major surgeries 8 weeks apart. I was facing a future filled with so many “unknown” elements.At that moment, “Life isn’t straight forward”, is what came to … Continue reading Living In Limbo