The complicated conditions that cause our chronic pain do not mean there is exclusively the physical pain in the body to cope with, as so many healthy people presume, it’s your entire life.
No single aspect of living goes untouched, no thought untainted by the constant presence of pain and the many symptoms of chronic illness. Yet our society seems in denial of all that’s unwell. We’re meant to recover as if it weren’t a complicated pain condition at all but a broken bone or painful tooth.
When we don’t recover, our symptoms are questioned. People who have no concept of what day-to-day living with chronic illness and pain offer their advice relentlessly, as if we haven’t already tried everything to help heal ourselves.
Others drop away, people fear and avoid that which is misunderstood and there’s nothing more misunderstood than invisible illness and pain.
As if it wasn’t already a struggle to keep going at all, I’m yet to meet a pain patient who hasn’t lost loved ones. Though equally, they all have found amazing new friends through shared pain and wonderful communities of pain warriors and princesses.
Like our symptoms we too are hidden. We hide our fears and our pain, our list hopes and dreams, the daily, incessant challenges of erratic energy levels and fluctuations in the symptoms.
Having a complicated pain condition like CRPS or invisible illness like fibromyalgia, and so many others that cause their patients to be so frequently misunderstood by our wellness-honouring society means we need also bear the burden of repeatedly explaining our pain and limitations.
This website is my offering to you. Knowing firsthand how horrific it is to live with pain from CRPS and fibromyalgia, I want to help, to relieve a little of the pressure and lunacy of what it means to live and cope with chronic illness and pain.
Delighted to welcome you to the new site. It has been a long time in the making, caused umpteen flares (despite my ever-present pacing advice… Ooops) but is now here in all her shining glory. I hope you enjoy and find comfort and useful info too. Read more about The Princess in the Tower here.
I am adding as many tips and techniques as princessly possible, to help your life with pain be a whole lot easier and you a lot happier ta boot.
I encourage you to connect with other pain patients worldwide (on the Guest Book & Facebook page), building a plethora of positive methods for our growing community of princesses [and princes] to live – and cope – with the chronic pain and symptoms of complicated pain conditions including CRPS/RSD and fibromyalgia.
Wishing you more strength, far better days and hope, for there is hope, no matter how far off it currently feels. Thank you for your continued support.
[avatar user=”jomalby” size=”thumbnail”]Gentle hugs x[/avatar]
grace says
I am heading towards my PPD evaluation and am soo spooked by the way this condition waxes and wanes like the cycle of a werewolf- cept without a moon, or the better hair, a rhyme or reason!!!
Grace
Jack Lowrey says
I’m sure you have heard of this, but in case you haven’t:
https://www.thesperoclinic.com/media/finding-hope-documentary/