Back to Blog
Itinerary.5/5/2024
The countdown to our trip to the UK to launch Recognise ME has started. We are leaving on Friday.
It is exciting! As usual we have had to organise this expedition carefully, bearing in mind limited energy and financial restraints, as well as necessary adjustments around both our health needs. That means we are spreading our journey to Leeds from Brakel (in Flandres, Belgium) over three days, making use of the cheapest ferry and suitable airbnb accommodations. Once there, we can recover for a few days before the big event. Emotionally it certainly feels big! What an achievement to celebrate, and how… The evening will be supported musically by my friends Robin Fishwick and Kwame D who is currently reading my memoir to inspire tailored songs. My publisher, Becky from Raven Crest Books will share her experience of working with a chronically ill writer with rare disease and fluctuating levels of functioning, and how she ended up advocating for the cause. The responses of the first few readers will be read, as well as some excerpts from the book. There will be a chance to ask questions, and to top it all off, we will end with a quiz. Obviously there will be refreshments. We are bringing Belgian chocolates, and quintessentially Belgian biscuits to tempt you, and as there may well be people with dietary restrictions, we will provide healthier options too. Of course we will bring paper copies of Recognise ME available to buy should anyone wish to. If any of you are crazy enough to want my signature, I will be all too happy to oblige. Against all rules of PR and marketing, I have decided to share my worries about it with you. Having booked a room, I have a number to work towards. If few people turn up I fear it will go down like a lead balloon. But what do we do if there are too many? I want everyone to feel welcome! That is why I have been sending out the invitations in stages, widening the group gradually. Though there has been plenty of interest expressed, and intent to come along, it has been hard to get firm commitments. I keep asking people to spread the word in any way they can think of, as I keep doing myself, asking for confirmation. They have responded positively in doing so, but still, I am left wondering if anyone will turn up. So, please, if there is anything any of you can do to reassure me, it would help me save some energy which I am currently wasting on fretting about it. There are still spaces available. Anyone with any interest in the plight of patients with chronic, rare, barely visible and/or fluctuating conditions is welcome, as is anyone who simply fancies being part of this celebration. Please, spread the word, share the invitation and let me know how many are coming, so I can send entry tickets. For those who would prefer to watch what is going on from a distance, there will be a live stream. The details of that will be posted later. If you are interested, please let me know, so I can ensure you receive them. Spread out over the rest of our stay, with plenty of recovery time in between, I have several talks booked in. I am looking forward to each of these, and am fascinated by how they reflect the different angles the core of my message can be approached from. As an alumna it is a great honour to be asked to speak at the University of Leeds about my lived experience writing a memoir about medical gaslighting. All faculties are invited to an online, and an in-person presentation. We preferred this to a hybrid meeting, to avoid some of the well-known technical issues that tend to interfere. To Quaker Friends I will be raising awareness about this injustice that is rarely mentioned and of which little is known. Annette Leonard, writer, speaker, and wellness coach, who knows about living with pain and illness as a constant companion, is interviewing me for her Chronic Wellness podcast. Meanwhile the eBook is already available in pre-order from Amazon for 99p, 99c, or 0.99 euro (depending on where you are buying it from). Those sales help me gain visibility, by pushing me up the rankings. Imagine if this would become a bestseller! So, please, consider buying one in support of my efforts. Considering the responses I have received so far, I am reasonably confident in saying you will get something out of reading it, if you do. It is a good book!
0 Comments
Read More
Your comment will be posted after it is approved.
Leave a Reply. |