What if we viewed lived experience as an asset? As an asset of professional, economic,…
Merry Christmas to my wonderful followers and friends
You not only support and care for me, but you have helped to bring my message and my experiences to a greater and greater audience. We’re up to 67,000 views already, in under two years. Thank you is so inadequate, but I hope you feel my gratitude.
I hope that 2015 is a better year for us all. I include myself in that – this year has been a huge success but also full of disasters, complications and infections. I hope my charity work, writing and speaking, and my audience, grows as much as it has over the course of this year, and that we will get on top of my health so I can enjoy a year with some quality of life. I’m so excited about all the opportunities and plans I’ve got – I don’t have time to be poorly!
My grandparents will be coming over for the day tomorrow so it will be just the five of us (I mean six, sorry Molly!) enjoying the day together.
Today is a mad dash getting IV antibiotics from the hospital for my kidney infection once the doctor can prescribe some, finishing off presents and writing cards, and mum cleaning the house ready for tomorrow. I am poorly but want to enjoy it as much as I can. I will try to sit up in my wheelchair for a little while tomorrow to open presents and take photos and just to enjoy being a family without being crammed into my bedroom. I do wonder whether sitting up will be possible though – just getting washed and changed in bed today was a mammoth task and wore me out a lot, making me breathless and bringing my tremors out in full force. However I am determined, and will sit up if/for as long as possible.
I won’t be able to join in with the food and drink of Christmas, of course, but I’m used to it now and Christmas is still special. I will be having my own “Christmas dinner” in the form of intravenous nutrients via my Hickman line, as I have every day over 17 hours. So many celebrations revolve around food or drink, which is hard for those of us who cannot eat. If you’ve got any spare change and want to help people like me to possibly be able to eat again, please see below.
Also a huge thank you to all the charities who have supported and worked with me over the course of this year, too many to list, but a special thank you to Together for Short Lives for giving me so many opportunities; Pseudo Obstruction Research Trust (PORT) – for whom I am now a trustee – for your support and for allowing me to become a part of the charity; Dreams Come True for granting my wish and making me an ambassador; and The J’s Hospice for providing care with your wonderful carers, nursing help from Bev with my ever-increasing and complex health needs, for giving me speaking opportunities and for your friendship and support.
I hope you have a wonderful Christmas. Thanks again.
Lucy and family (mum Kate, sister Vicky and assistance-dog-in-training Molly)