A Life Of Love, Laughter, Faith And Hope, As I Learn To Live Again With A Rare Disease
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
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
"Hello, you're back again, so nice to see you, how are you?" You'd be forgiven for thinking this warm greeting was being given by a friend, a colleague, or a local shop owner who I'd known for years. This was the greeting I received by the Radiologist at my hospital, when I arrived for my … Continue reading MRI Marathon
For 8 days in November 2017 I lay in a hospital bed basically writhing in pain. Rewind to the beginning of that 8 day period and I was being rushed to hospital in an ambulance as my left leg, the one with the non union femur fracture, was like a wooden block and it would … Continue reading A Hospital Stay To Remember…..Or Perhaps Forget!!
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?
(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?
A cheerful look brings joy to the heart, and good news health to the bones. Proverbs 15:30 It's a gorgeous morning. The sun is shining, the birds are singing. I can hear neighbours chatting as they enjoy a morning walk and a cool gentle breeze is blowing through my bedroom window. I'm resting on my … Continue reading A Cheerful Approach To A Chronic Situation
My Medical Musings 