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?
(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)
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
How many times have you said, “No worries, that’s as easy as…….”I know I’ve said it countless times during my life. In fact its how I used to live my life. Everything was seemingly easy and if it wasn’t, I could quickly convince myself it was.I had a positive can do, absolutely, yes to everything, … Continue reading It’s Never As Easy As…
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
For two years, before medically retiring, I was still holding out hope of being able to return to work eventually, despite being on Income Protection and battling one health hurdle after the other. The realist in me knew I was facing a very different life, as I began to lose my ability to walk any … Continue reading Driving “Miss Sam”
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 to … Continue reading Caring For The Carer
It’ll do”“It’s good enough”“You’re doing so well”” Good job”“Time to rest”“Not going to happen today”“Maybe tomorrow”In my previous life, by which I mean life before chronic illness, I always had a whole range of “self talk” language helping me achieve my goals.They were all positive, affirmative statements like;“you can do it, you’ve got this, keep … Continue reading Self Talk….”It’ll Do” And Other Chronic Illness Chat Lines
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!
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