Lucy's Light

Poem: Longing For Life (2021)

I’m living on the edge; how can I do this? Life slipping from my grasp like sand through fingers I don’t want to die; I don’t want to miss Yet at this moment, so fragile, my life only lingers I look at others and feel pangs of jealousy […]

Sod’s law and more IV antibiotics – Friday 27th February

I start off with a * — I am posting this Saturday 27th February as I was really poorly Friday evening, night and most of today. Nearing 40˚ fevers, feeling absolutely horrid, in and out of sleep, sweating, rigors, headache, muscle pains and more. Not pretty. I’ve barely […]

12th-19th February – a week of conversations

This week has been an interesting one. It’s been a week of tough conversations and trying to come up with a plan. Symptoms wise: the fevers continue on and off, and with that comes chills, sweats, episodes of rigors, bone and muscle pain, neck pain, nausea and more. […]

Difficult Conversation with my Sister

Today Victoria, my sister, was here. We had been unsure how to get her to come over to talk about things, without making her worry unnecessarily. Fortunately she offered to come today, and so we had a conversation. Mum asked her to come into me to talk and […]

How did we get here? [2020-2021]

I write this at the end of January and early February 2021, following a few months of stark realisations and a new normal to cope with. I want to reflect on the last 5 months of life, to share a journey not many realise I have been on. […]

Why This Blog? Why Now?

You may be wondering why I’m starting a new blog. If you already know me, you may know some of the journey I’ve been on and you will know to find me on my “normal” (now business) website. I felt a new site was necessary as my old […]

Poem: I cannot be, but I am enough (2018)

You can be anything you want to be in your dreams but can you be anything you want to be in real life? You can succeed how you want to succeed if you work hard, put your mind to it, and you try. If you do not try […]

“One Sentence That Transformed My Life” – TEDxNHS 2019 [Video]

I wanted to post my TEDx talk from TEDxNHS 2019 which is so relevant to the subject matter of this blog – living life, talking about dying, accepting our own mortality, making preparations for life and end of life, and good experience of health and care, including good […]

My Old Blog Posts – where to find them?

I am aware that this blog only begins in late January 2021. I have blogged since 2012 and all my previous blogs (and possibly some new business related ones) are still all available on my other (now business centred) website. Migrating them over would be such a difficult […]

What’s it like to live with a life-limiting condition? What’s it like to face your own mortality?

Lucy Watts MBE invites you to come with her on her journey through life – and end of life. Inspired by the late, great Kate Granger, she wants to give an honest look on life with a life-limiting illness and facing your own mortality, as well as experiencing end of life. So few people share an honest narrative and do not share the difficult side of experiences of illness in a way that is relatable and educational; Lucy wants to give people an experience of travelling this journey with her: through life and – when it comes – end of life. This isn’t a morbid blog. It’s about finding the silver linings, celebrating what is, cherishing those who are dear, finding and sharing the humour and laughing through life, and being brutally honest about life – including the highlights and the s*** bits. It’s life, in all its glory.

It’s a candid blog full of life, laughter, love and loss. Lucy wants to inspire people to live their life to the fullest, make the most of every day and to focus on all they do have, and motivate them to think about and plan for the only guarantee in life — death (as, in case anyone hasn’t noticed, life has a terminal prognosis) and to ensure their wishes are documented and all necessary paperwork is completed as soon as possible (aka, get your s*** in order!).

This is not a death blog – it’s a narrative of life, death and everything in between. A story of a life well lived.

Lucy Watts MBE is a prominent patient leader, disability activist, palliative care advocate, consultant, trainer, speaker and entrepreneur. She has a progressive life-limiting condition and extremely complex medical needs and has been living with the knowledge that she will have a short life since her mid teens; she has far exceeded her original prognosis.

Lucy wants to share her journey through life in a more candid and relaxed way. Lucy has truly lived an incredible life, and has far exceeded all expectations – both in terms of survival, and in terms of what she can achieve. However, Lucy’s illness is changing and at some point, she will reach the end of her life. When that’ll be, no one knows. A comment on a group about Lucy being able to voice something so many others cannot, inspired her to start this new blog. She hopes people can learn from, be inspired by and gain through her sharing her experience.