One thing chronic illness guarantees is uncertainty. One thing a global pandemic, in the form of COVID-19, guarantees is uncertainty. No matter how much we might like to think we have things under control, our bodies, diseases, unexpected life events, loss of loved ones, always find a way of creating times of chaos, confusion, fear … Continue reading Facing An Uncertain New Year
I have a “Now or Never” philopsophy to life that sometimes gets me into trouble. Well, let’s face it….always gets me into trouble! Living with a physical progressive disability involves a lot of pain, lack of mobility and extreme fatigue every day. This kind of disease is constant. It doesn’t ebb and flow with flares. … Continue reading My Latest Podcast….A Pushing And Pacing Approach With Chronic Disability
I don’t generally suffer from anxiety. It doesn’t mean I don’t get stressed. Of course I do. We all do. My overall health situation rarely stresses me. I accept it is what it is, and I’m continually adjusting my life to accomodate it. Pain however, when it's at unrelenting levels day after day, does cause … Continue reading Dancing To The Beat Of My “Chronic Illness” Drum
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
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?
It's official! My spine is full of shenanigans and my Specialists can't quite find a way to fix it, not without creating even more shenanigans. My spine is completely unstable at l4/l5. L3/l4 isn't far behind it but the pain I experience from the severity of the instability at l4/l5, smothers pain I would be … Continue reading Spinal Shenanigans….It’s A Little Complicated
(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?
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 that" mindset. Don't get me wrong, there is lots we can't do when living with … Continue reading How Can I Do That ?
We all know the saying; "When life gives you lemons, use them to make lemonade" It conjures up the notion of strength, determination, optimism, resourcefulness, resilience. All characteristics I've drawn on to deal with the "chronic illness lemons" continuously thrown at me. My lemons often feel like tennis balls in one of those practice machines. … Continue reading This One Is All About Handling Lemons