#Chronicillness #invisibleillness #mecfs #cfs #NeuroME

Fractures within the community

This post has been years in the making. And even after sitting on it for so long and coming back to it to triple check I’m expressing myself as carefully and as clearly as I can, it still feels controversial to click Publish. There is so much more to say about this. But I amContinue reading “Fractures within the community”

Let the baking begin!

There are less than four weeks until the tea party. One of the silver linings of this year’s event being ‘online only’ is that I can risk using some of my energy on baking in the run up to Sunday 17th May. For the first few years I couldn’t manage any baking at all forContinue reading “Let the baking begin!”

Blue Sunday: The Origin Story

How ‘Blue Sunday’ began. November 2012. I have only one memory of my 22nd birthday. It was only three days after my diagnosis and I was so unwell after the appointment with the Neurologist who diagnosed me. My 23rd birthday? I’m not sure about either. Try as I might I can’t form a memory ofContinue reading “Blue Sunday: The Origin Story”

Join in online

S U N D A Y • 17th • M A Y • 2 0 2 0 I’m sure it comes as no surprise that I’m sharing this message with you all. With the tea party scheduled for 7 weeks time, and with placing myself in a minimum of 12 weeks of physical distancing/isolation, theContinue reading “Join in online”

Welcome to Our ‘Normal’

Swinging between sympathy for those who are so alien to this kind of isolation, and bitterness that so many initiatives on how to help people feel less isolated are suddenly coming into practice. The rallying of support is heartwarming. Yet at the same time it’s heartbreaking for someone like me to see, because I’ve spentContinue reading “Welcome to Our ‘Normal’”

Social/Physical Isolation Survival Tips

I joked recently to my family and friends via text message that if anyone started getting ‘cabin fever’ or going ‘stir crazy’ with having to stay at home and remain isolated, that they should come to me for advice on how to cope. Nine and half years of (mostly) living within what are now theContinue reading “Social/Physical Isolation Survival Tips”

We are Less (at least to Them)

I have always known that society views me as Less. I have always known that those of us with unconventional, chronic health issues are ignored and shoved out-of-sight and out-of-mind. I have always known that society views me as a burden their tax deductions must pay for. I have always known that in making aContinue reading “We are Less (at least to Them)”