30 Things About My Invisible Illness You May Not Know

I am planning to add my own answers to these questions, but this blog illustrates the feeling of living with a complex and chronic condition.

Life Through the Eyes of a "Cat"

Invisible Illness Awareness Week

Even when we have known a person for decades there are still things we can discover about their daily life with chronic illness. And when we learn a bit more about what something is they love to hear, or what their morning may be like, it can help us be more compassionate to all of those around us who are suffering in ways we may not have noticed.

You never know what you may have in common with others around you.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Ehlers-Danlos Syndrome, Chiari Malformation, Syringomyelia

2. I was diagnosed with it in the year: 2009

3. But I had symptoms since: I was a small child

4. The biggest adjustment I’ve had to make is: Realizing that I am always going to have to struggle with everyday tasks…

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Just as I’d given up on my dream…

As you all know, I applied for a PhD about a month ago. I thought I’d missed out on it, as I was sure the interview week was last week. I was starting to feel really down, knowing that somehow I’d messed up my application so much that they thought I wasn’t even worthy of an interview. 
I got a text from my big sister asking how it went, and she was the first member of my family that I told I’d completely blown it. I was devastated.

Then I checked my email, and there’s an invite to interview.

I absolutely cannot believe it. I’m focussing my every effort onto getting this presentation right, because I will not lose this studentship if it’s within my control and capacity to do so. I care so strongly about the topic of the study, and am so excited by the way this project could potentially change the face of education. I really hope it will all work out.

Wish me luck!

Your hopeful little hobbit.


I’m sorry I haven’t posted much of late. I have partially been knocked sideways by pain and medication, but I have mostly been enjoying the new flat and the joys of TiVo.
Being able to pause the tv when it is time for painkillers and stuff makes it less inconvenient to have a chronic condition. Everything is recorded for another time!

Going to try to sleep now even though there is a daddy long legs flitting around the bedroom.
I hope it finds anice corner to hide in, and doesn’t pester me much.

Just about in one piece.

My partner moved a lot of stuff by foot on Friday before signing the housing contract, with some help from our utterly great landlady. Then he had some help from an awesome friend and moved the vast bulk of our stuff on Saturday between 10 and 1pm. He made a few more trips by foot on Saturday too. Meanwhile I did some library volunteering 10-12 to stay out of the way, and then unpacked and provided tea for the afternoon.
Today we left the house at 11, and I cleaned (thoroughly) while my partner ferried the last bits to our new place. He got some funny looks carrying an office chair along the street. I helped him with the last few runs, on crutches with a rucksack and even stuff tied to the outside.
We made it and left our old flat for the last time at 7pm. I think I may have overdone it a bit, because I suddenly feel very cold, but we will get the verdict tomorrow when I try to move!