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!

“Where There’s A Will There’s A Way”….Is It Really That Easy?

I was loading my dishwasher this morning and fighting with a plate refusing to fit in. It wasn't really the plates fault. I was in severe lower back pain and trying to get the task over as quickly as possible. I was also trying to fit way too much into this particular load.....as you do!! … Continue reading “Where There’s A Will There’s A Way”….Is It Really That Easy?

Where’s The “Off The Charts” Rule Book?

(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?