A Life Of Love, Laughter, Faith And Hope, As I Learn To Live Again With A Rare Disease
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
One of my Facebook Forum members, Gina Baker, shared her story recently of living with Mitochondrial Disease. I was so glad she did as I knew very little about it and having a rare disease of my own, I am very keen to raise awareness of other rare diseases. I asked Gina if she would … Continue reading Shining The Light On Mitochondrial Disease
My beautiful Dad passed away 5 months ago. The initial weeks after his passing saw me encompassed in raw grief. The kind of grief constantly creeping up on you, and opening the flood gate of tears, when you least expect it. The kind of grief where you grapple to make sense of it all. When you … Continue reading It’s Father’s Day…..”Good Grief!”
Life isn't always fun. It will always have highs and lows. Times when we are ecstatic. Times when we are happy. Times when we are content. Times when we are melancholy. Times when we are bored. Times when we just have to deal with drudgery. I'm sitting in the "dealing with drudgery" category at the … Continue reading Dealing With Daily Drudgery
In 2020, I launched a new venture....my Podcast Medical Musings With Sam. Firstly I want to thank you all so much for your support. This has been one of the most rewarding, emotionally challenging adventures, I’ve ever tackled. Why? I think because it’s caused me to really go down memory lane in a way I wasn’t … Continue reading Listen To Your Own Story
Snap, pop and crackle…and just like that I can't move my back. I've been doing reasonably well so it's disappointing when my broken body decides to break a little more, but this is life with a crazy bone disease. I can't thank my beautiful husband enough for his love and support. When you can't do … Continue reading Love Conquers All….Even Acute and Chronic Pain
When we think of Chronic Disease, we wouldn't usually have happy thoughts or find ourselves looking forward to a bright future. Fear, horror, uncertainty and grief are generally the normal response. However, the reality of living a chronic illness life can be quite liberating, as I've surprisingly found over the past 7 years. One of … Continue reading You’ve Created A “Chronic Illness Career”….Don’t Forget To Have A Weekend!
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
We all make decisions every day. Big decisions, small decisions. Some we are aware of and some are just automatic. When I had reasonable health, I would spend my days making business and personal decisions without much effort. Some might have kept me awake at night but not many. I never had to think about … Continue reading Along Came Chronic Illness And Life Turned Upside Down
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
