Soula Mantalvanos (me!) as a guest contributor on MoreGoodDays. If you're living with fibromyalgia, you'll know first-hand how the experience forces you into constant symptom tracking. What’s this niggle? Is this [...]
Near impossible! Slowing yourself down when you’re feeling great is a pathetic concept for a person living with chronic illness. It’s not like you ever go very [...]
A brief note on pacing Sometimes pacing means trading a walk to manage baking a cake. I wanted to post this as too many of us managing chronic illness are made [...]
Preparing for my recent trip to Venice, I felt the urge to look a little more stylish. So I thought it was time to update my seating aid cover. I was specifically looking for another cover for my trusty custom-cut foam pieces.
While 'researching' places to eat as I sat by the canals drawing, Theo accumulated excellent bearings for Venice's delightful geographical maze. This helped us find the shortest way around the place when we needed it as we're both always concerned about how my up-time is managed. Theo gathered an impressive list of food recommendations, as mentioned in the full report of our Italian trip, Venetian Refuelling (part 1).
Who would have thought it? But these wobbly, jelly-like babies (officially known as Happy Ears) are helping me get a great night's sleep. At first, I thought the sound caused by putting [...]
I was going to title this blog Fatigue, but after reviewing it repeatedly, I decided to title it Stamina instead. It took me years to get to 'managing'. Now I have transitioned to pacing. As stated in my previous post, I'm living now. I'm not in a passive state watching and being attacked by an unpleasant experience. It wasn't easy getting to the state of 'management'. There are so many 'have to' activities – we can't avoid these. When I explain my 'have to' activities such as showering, making a coffee, sitting/standing all day, dressing, etc., people look at me bewildered, but you'll get me. Until this fight is experienced, one can't understand that day-to-day activities can strip your energy and count as 'activity'. It feels insane when faced with this realisation. But I have found a way...
That would be like me saying ‘goodbye flares’ in my undiagnosed years. You just don’t get to make those decisions when you don’t have explicit knowledge about the beast you are dealing [...]
A most essential chat – person (living with pain)-to-person (living with pain). As well as having a lived experience of pain in common, Deb and I also share a love for [...]
My endless efforts to find a way to get back into regular yoga practice keep falling on their head. Pardon my pun... but I am hopeful FeetUp may help with that problem. Prior to living in the land of pelvic pain, I lived in the land of bliss practising yoga regularly – four times per week! For 45 minutes I was part dog, part warrior, a cat, a cow, even a pelican at times. I became a tree, saluted the sun and enjoyed many various poses. To end my routine, I'd slide up into shoulder stand (8 minutes), then send my toes passed my head in plough pose (for another 8 minutes) before unravelling to a corpse in Savasana pose. That was before I went for a walk!
