Anyone living with chronic illness has a complex relationship with Hope. Over the last couple of weeks mine has been so tumultuous that we could be beyond speaking terms soon. Continue reading
Listening to inspirational, creative dreams whilst reducing activity
What metaphors or images would you use to describe your experience of ME? Continue reading
I’m particularly curious about how far the ripples from chronic illness affect seemingly unrelated aspects of our lives. Continue reading
This post describes my recent ‘minor ailments’ and raises ideas about highlighting sick on Sick Continue reading
I will try to frame this in the sense of exploring how we process fear of death Continue reading
imagine that the next election results in a government whose top priority is people with ME/Spoonies Continue reading
On Twitter there have been some interesting discussions this week about disability identity and ME. I think this is worth everyone with ME thinking about. For most of us ME is enduring, substantial & has a significant effect on our life. These are the very requirements of defining a disability. Continue reading
An argument has erupted this week between UK psychologists and funders that has relevance for the problems we face with ME research. Could a common purpose create a very unexpected alliance to improve appropriate allocation of research funding? Continue reading
Is it not so much what you do as what doesn’t happen that determines recovery from ME? Musings in light of the finding of little difference between treatment groups at the PACE follow up. Is relapse more important than improvement? Tips for preventing relapse. Continue reading
An exploration of the crisis of not knowing which sources of information to trust. Continue reading
We read about someone who’s found an instant cure from (insert Spoonie condition of your affliction) after a relatively short amount of time. This post unpacks some of our initial thoughts including:
They were never ill in the first place; They were ill but it’s not true that they are now well; They can’t have had what I have; It’s true that they recovered but for a different reason; It’s great that they found a way to get well; If I try that will it work for me? I’ve been ill much longer, I’d know if that works; Why have I been ill so long? It’s not fair; The newspaper has got it wrong. Continue reading
Topics touched on in this post: POTS vs ME symptoms; heart rate monitoring and exercise; exercise for POTS; post-exertional malaise; adrenal fatigue and POTS; diet and nutrition. This is a post which is more about asking for tips from you than offering tips. Please add POTS/ME based comments. Continue reading
Is CFS “Real”?
Tongue-in-Cheek contemplation of the un/reality of CFS. Continue reading
A discussion about the ME community’s response to the Biopsychosocial Model and SEID.
A reflection on the common spoonie experience of boredom.
“I was at the point where symptoms are no longer so loud as to drown out other concerns and the sensation of boredom was reaching a crescendo.”
Attempts to disentangle #PoTS and #MEcfs: Some observations from my experience of the diagnostic process.