A Life Of Love, Laughter, Faith And Hope, As I Learn To Live Again With A Rare Disease
“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
(In loving memory of my precious Dad, who passed away peacefully on Easter Monday) One of my earliest childhood memories is being on the passenger ship "Aurelia". I was 3 years of age and embarking on a journey that would change the entire course of my life. I was migrating from the United Kingdom to Australia … Continue reading A Carousel Of Memories And Moments
I love celebrating special occasions. I’m a real “Hallmarks moment” kind of girl. Always have been and I suspect I always will be. Cakes, balloons, lots of presents and good food. I love making the person who is celebrating their special day, feel like they are the most important and loved person in the world. … Continue reading A “Hallmark Moment”….In Chronic Illness Style
(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 Where’s The “Off The Charts” Rule Book?
Many people with Chronic Illness require full time Carers. Often that role is filled by loved ones. Our husbands, wives, life partners, siblings, parents, children, even grandparents. Watching a loved one suffer is just so confronting. No one wants to see someone writhing in pain, or watch the person they're caring for lose their ability … Continue reading Caring For The Carer
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
There is something good in every day. Is there? Is that even a possible concept for those of us who have chronic diseases? The initial response from the chronic illness community is likely to be a resounding "No". Pain, procedures, lack of sleep, lack of understanding, countless medical appointments and tests, chronic fatigue, lack of … Continue reading There Is Something Good In Every Day…..Even With Chronic Disease
My Medical Musings 