A Chronic Christmas Celebration….(A Few Tips to Create Your Own Unique Festive Holiday Traditions)

Looks like my husband and I made it on Santa's "good list". Santa even did an early drop off with personalised Santa sacks on the 23rd December!We are however not allowed to peek inside until Christmas morning. It even says so on Santa's sack! 😇😏🥰🎅 (yes, I am connecting with my inner child for a … Continue reading A Chronic Christmas Celebration….(A Few Tips to Create Your Own Unique Festive Holiday Traditions)

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!

Have Yourself A Merry Little “Chronic Illness” 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 Illness” Christmas!

Dancing To The Beat of My Own Drum..Chronic Illness Style!

I don’t generally suffer from anxiety. It doesn’t mean I don’t get stressed. Of course I do. We all do. My overall health situation can cause significant stress, on occasions, but I accept it is what it is, and I’m continually finding ways to adjust my life to accomodate it. Pain, when it’s at unrelenting … Continue reading Dancing To The Beat of My Own Drum..Chronic Illness Style!

Right Now I’m Thinking…What If?

If you constantly question your reality and worry about the future, you are not alone. Last year I was honoured to be invited to team with The Mighty to write an email newsletter, focusing on dealing with the “What If’s” of Life. I agreed in the hope my experience of living with a rare progressive disease, along … Continue reading Right Now I’m Thinking…What If?

My Interview as a Guest on, “I Am Not My Pain Podcast” …..With Host Melissa Adams

I'm so excited to share with you my interview as a Guest on "I Am Not My Pain Podcast. This is part one, of a two part interview. I was so honoured to be invited by Melissa to talk about my health story, my blog, my book, my forum and even more importantly, how I … Continue reading My Interview as a Guest on, “I Am Not My Pain Podcast” …..With Host Melissa Adams

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?

My Chronic Illness Rule Book ….(My Four Day Rule)

(As published on The Mighty) What are the rules for living with a chronic illness or rare disease? Where can I find the rule book to help me manage, especially when all my symptoms are flaring and are "Off The Charts"? This is the question my husband and I have been contemplating over recent weeks. How do … Continue reading My Chronic Illness Rule Book ….(My Four Day Rule)