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Update on Jenny’s operation and week in hospital – October 2015

Jenny arrived back home from hospital at 9pm yesterday. She is a lot worse. Her heart was too unstable and her condition too fragile in the first place for her to be moved from her bed onto a stretcher, let alone survive a 6 hour ambulance journey to a hospital in London, being in the […]

Jenny’s virtual book club


In early September I had a mini-stroke (thankfully there were no lasting effects or damage from this; I was lucky), followed by the worst 3 weeks of my life, in which I had 10 severe uterine haemorrhages and heavy bleeding in-between the haemorrhages. I am almost passing out all the time from hypovolemia and […]

What role have books played in my life?

Books were read to me before I can even remember, before my first memories of life. I wonder what impact they had on me and on my growing brain. Were the stories being woven into my subconscious? It’s bizarre that even though my memories from that age are gone, when I see the front […]

Big news

I got my genetic test results back. They show that I have mutation of the gene COL3A1. This means that Dr. Saggar (Senior Consultant in Clinical Genetics at St. George’s NHS Trust and Senior Lecturer in Medicine) has officially diagnosed me with Vascular Ehlers-Danlos Syndrome Type IV (vEDS is the abbreviation), a rare genetic disease. […]

My greatest wishes on my 29th birthday


Today I am 29 on the 29th! The only time in my life when the age I turn on my birthday is the same number as the date of the month on which my birthday falls. Numerically satisfying, if a tad arbitrary. Anyway, these are my ten greatest wishes on this birthday. I hope a […]

Ten years

On 1st December it will be ten years exactly since Jenny suddenly became severely ill. Ever since that day ten years ago, she has been unrelentingly acutely ill. She comes very close to death every day. It is a horrific life for her.

She tries to do something different each year to mark the anniversary […]



I close my eyes. My translucent form drifts into the past from the bed where I’m lying in the present and I’m back in that garden with you. My ghost self glides into your body, occupying the same exact place in time and space as you. Kneeling here, we reside within each other. My […]

My Favourite Things

On 1st December it will be nine years since Jenny suddenly became ill. Last year, she put everything she had into this important blog post about her illness.

This year, however, Jenny has decided to do something completely different. When you’re as ill as she is and just desperately trying to survive the day and […]

My Dream ~ by Ann Rowbory

[Written by Ann Rowbory, carer and mother of Jenny.]

I have a dream that there will be a UK hospital for severely affected ME patients.

These patients’ needs are many and different from other patients. For example, they cannot have visitors because many of them are unable to talk and just having someone present in […]

When it hasn’t been your day, your week, your month or even your 8 years

Eight years ago today, I suddenly became ill and my life changed forever. (My story and details of my illness are here but this post is not about that).

To mark today, a special video has been made for me. It’s important to me that people know a bit about what I was like before […]