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)

There is Something Good in Every Day…Even With Chronic Disease

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

Caring For The Carer

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

Self Talk….”It’ll Do” And Other Chronic Illness Chat Lines

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

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!