What is a Spoonie?

I’ve thrown around the term ‘spoonie’ a lot (like in the category ‘Make Money as a Spoonie‘ and in my ‘About Me‘ page), but I realised that I never actually explained what one is, so I thought I would write a post about the spoon theory. What is a spoonie? …

Waiting, Parting and Persevering

It’s already time for A Chronic Voice’s October linkup party – it feels like only yesterday I was writing my first post for May’s linkup party! In this linkup, I’m writing about waiting, parting and persevering in my latest hospital admission. You can see A Chronic Voice’s post for this …

Living with Dystonia: Tom’s Story

Guest post: What It’s like Living with Dystonia by Tom Seaman I have lived with chronic pain from dystonia for almost 20 years. Since it is often very difficult for others to understand what it feels like, I want to provide some information about what it is, how it feels, …

Researching, Reusing and Recounting

In this month’s linkup party hosted by A Chronic Voice, I’m talking about researching, reusing and recounting when you have a chronic illness. This means being your own investigator, attempting (and failing) to count meds and the oh-so-controversial plastic straws. You can read A Chronic Voice’s post for this linkup …

Living with Trigeminal Neuralgia: Liz’s Story

Guest post: What It’s like Living with Trigeminal Neuralgia by Liz I live with a facial pain condition called trigeminal neuralgia. I have other pain issues too including a back problem which resulted in me having to take early retirement when I was twenty-eight. My back pain is extremely debilitating, …

Living with Hereditary Lymphedema: Jordyn’s Story

Guest post: What It’s like Living with Hereditary Lymphedema by Jordyn. You can find Jordyn’s previous guest post on Erythromelalgia here. Hello again! My name is Jordyn and I’m chronically ill. I actually have many different chronic illnesses, but I thought that today we would talk about one of the …

Living with Mitochondrial Disease: Kelcie’s Story

Guest post: What It’s like Living with Mitochondrial Disease by Kelcie Miller-Anderson My name is Kelcie Miller-Anderson, a twenty-something social entrepreneur and scientist from Canada. I also have several rare diseases. 3 to be exact, but the one that is most significant and impacts my life daily is called Mitochondrial …