A Life Of Love, Laughter, Faith And Hope, As I Learn To Live Again With A Rare Disease
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
A week ago I had yet another spinal MRI, my second in three months. Something new happened on the left side of my lumbar spine a few weeks ago, which caused a massive increase in my disability. I can no longer stand for more than 5 or 10 mins at a time, even using aides, … Continue reading An Honest Chat With My Specialist….It Just Can’t Be Fixed!
I thought I was pacing at a level which couldn't possibly get any slower. My last blog post gave you a Peek Through My Window Of Pain. It details how slowly I need to move, how limited my physical functionality is. Despite my limitations, I have been comfortable with my daily routine, with my ability … Continue reading My Burst Bubble Of Contentment
Pain can’t just be ignored. Disease can’t just be ignored. People with disease and pain can’t just be forgotten. I’m not alone in suffering horrific daily pain. So many in society struggle every day. Some manage to work or interact with the wider community in some way. Others like me, live a permanently reclusive life … Continue reading A Peek Through My Window Of Pain
I can cope with most things about my disability. I'm not saying it's easy, it's far from easy. I have though, over the years, developed a toolkit of chronic disease management strategies which I've written about previously. These help me greatly on a daily basis: My Chronic Disease Management PlanBody Behaving Badly) My pain is … Continue reading Sleepless Night Strategies
I love life's little challenges. I love problem solving and turning obstacles into opportunities. I love putting a positive spin on what would otherwise be a very negative situation. I've always done this, both in my personal and my working life. So, chronic disease really wasn't going to change my approach to finding a way … Continue reading The Non Negotiable Chronic Illness Rule
This week on my forum Medical Musings with Friends , I posted a segment called "Any Questions?" I wanted to invite my forum members to ask me anything about my life, my disease, my writing etc. It was an open book kind of segment. The recurring question, or theme to the questions, was; "how do … Continue reading Any Questions?
When we have chronic illness, our minds are quickly programmed to think about all the things we can no longer do. Doctors, allied health professionals, family and friends, can easily feed us messages which concur with our “I can’t do it” mindset. Don’t get me wrong, there is lots we can’t do when living with … Continue reading “You Sound And Look So Well!!”
No matter what is going on in my life there is always a constant certainty.... A cup of tea fixes everything! There is something strangely calming about putting on the kettle, taking out a pretty china cup or mug, and anticipating sitting in a comfy chair, slowly sipping this hot delight. It may be coffee, … Continue reading A Cup Of Tea Fixes Everything
