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 website has become business focussed, whereas this is very personal, and although I could migrate all my old blogs to this website, I don’t have the time and energy (and it failed when I did try) so head over to http://www.lucy-watts.co.uk/my-blog/ for my old blog posts.

I’ve decided to start this blog to share my personal journey and experiences at a difficult time in our lives. The reason for this blog is a recent change in my health. My life has changed a lot since September 2020, with a huge decline in my condition and a rapid escalation of the complications. A complete rethink of my life has been necessary and I’ve been struggling to function. I am possibly facing the end of the road with my conditions and complications as we are struggling to find ways to manage or treat them. It’s this change in circumstance that inspired me to start a new blog with a very different purpose. This will be a candid, open, frank and emotive blog that will contain life, love, loss, laughter, brutal honesty, joy, fun and contentment, as well as sadness, frustration, anger, grief and everything in between. It will be real. It will be many things depending on how life pans out. It won’t be polished or perfect – which the perfectionist in me finds hard – but with my health declining, my energy failing, my productivity down to almost nil and my symptoms being overwhelming (near constant fevers is not conducive to cognitive function), I don’t have the cognitive capacity to care about it being perfect right now. It’s real, it may be messy, it may go off on tangents and not make sense, but I want to write, I need some outlet, and by god if something good can come of that then it’s worth sharing. It will be what it’ll be. I just hope it’ll be useful, that each reader takes something from this blog – and possibly vlogs if I ever feel up to that.

This will be my life in my words and give you front row seats into life with a life-shortening condition and extremely complex medical needs and at some point, a window to the world of someone approaching and experiencing end of life.  We’re facing difficult conversations about my future and what is and isn’t possible, what type and level of intervention is in my best interests, what we need to put in place to ensure my wishes will be followed and to ensure I am not written off too soon nor given things that go against what’s best for me and against my wishes, and so on and so forth.

It’s almost hard to believe this is happening now. We’re hoping on a miracle – which is that something else will be wrong to cause these infections so we have something we can treat – but we have to prepare for the worst, which is that we can’t treat the infections, there’s nothing we can do and actually keep on giving me IV antibiotics isn’t in my best interests and letting nature take its course. We’re not there yet, but we’re not far off if nothing is found, and nothing changes. If you pray – please pray. If you are a believer in energy and healing – please send good energy and thoughts. If you don’t – then I just hope you will listen and read, empathise and keep us in your thoughts.