ME/CFS

Getting down to the root of my fibromyalgia

~ Helen White ~ Leave a comment

If recovery from chronic illness is like a long-running detective story, with us as its protagonist, this year has felt like one of those chapters that make sense of quite a few things in a series of "a-ha" moments. And though what I have learned in quick succession may very-well have overwhelmed me, it has also enlightened me as in TO LIGHT ME UP with a new degree of self-appreciation and awareness, also clarity as to how certain root circumstances click together to make chronic illness what it is.

Syndromes

~ Helen White ~ Leave a comment

Suddenly, people like me, on the long-haul to solo self-recovery from "mystery" illnesses find we are not all alone in here. Amidst the sea of people embarking on the bewildering covid long-haul recovery path, I'm hearing such a lot of talk about syndromes that are painfully familiar turf. So, what would I share with anyone at the start of such a journey and what does (or will) the coincidence potentially tell us about chronic fatigue, fibromyalgia, PoTs, MCAS and a whole load of other overlapping syndromes? Here begins the mass learning curve!

Moving more, not less

~ Helen White ~ Leave a comment

My physical foibles (labelled such things as EDS and chronic pain) don't render me unentitled to a gloriously reimagined health future but even more prone to be open minded and eager enough to embark on the journey because there are no rules where I dwell, it is all a giant leap in the dark so why not make it a leap towards what I prefer to envision and thus create. The first step is to make friends with movement...

There will be times when you just can’t (as well as times when you certainly can)

~ Helen White ~ 1 Comment

How do we know the difference between when our intuition is speaking to us or when our self-sabotaging fears are stopping us in our tracks? This is an essential lifeskill for self-care and guidance when we venture back into life's busy fray...

Rigor mortis

~ Helen White ~ 1 Comment

Why does the kind of stiffness that can be likened to rigor mortis occur in the body of someone with fibromyalgia; are there any clues why that could happen in a living-breathing person? Rigor "stiffness" mortis "of death" says it all really....it is a condition of death so what makes it appear within life for just so many people, resulting in a kind of half-life. I had been here before but this time I wanted to get to the bottom of the mystery...

OK, so I overdid it…but I learned a lot

~ Helen White ~ 5 Comments

There's nothing to be lost by being wrong (as I am prepared to admit), just as long as you learn from it. Better still, regard it as an opportunity to mix the timely reminder together with new things that you have only just become aware of...which is when you realise there really are no mistakes, only evolutions!

So, last time I shared about getting back on my bike and here's how it went afterwards...

Are you a high sensation seeker after all?

~ Helen White ~ Leave a comment

Being a High Sensation Seeking HSP is a package of being both highly sensitive yet kind of addicted to the buzz of a thrilling experience and novelty; a craving for being in a regularly high state of mental or physical arousal. If you've spent years being almost painfully sensitive or even unwell, perhaps with chronic fatigue, you may quickly brush this off as nonsense in your own case. Yet, as I discovered, it pays not to be so quick to dismiss this possible trait because finding out you have it (if in some less obvious or conventional ways than other people) could shed an enormous amount of light on your long-running health or other issues.

Who knows your pain

~ Helen White ~ 5 Comments

When we are in chronic pain, or even an episode of acute pain that seems to go on and on, who do we share that with, can we even expect to share and does it make it better or worse to convey to loved ones what we are going through? Yet, do we need that outlet of saying it like it is and not feeling so isolated in our experience and, if so, where do we get that from, without stirring up the pot to make ourselves feel all the more defeated from over-talking it. This conundrum is familiar territory to anyone who lives with pain, chronic illness, even the disillusionment of daily chronic fatigue. Sharing some home truths, perhaps some helpful perspectives, from my own experience of this highly emotive topic.