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Return.26/5/2024
There we were, in Dover Port, waiting to board, and I was thinking.
What a fabulous time we have had during our trip to the UK, from day one. It was a journey full of reminiscence and nostalgia, whilst creating beautiful memories to look back on later, and the launch of something new. We met up with wonderful people, old friends and new. We had fun and meaningful connections with random passers by. There was joyous celebration, but also the sharing of pain and suffering. I was deeply touched by the trust vested in me by people who have been close to my heart as well as some who were strangers to me minutes before. My body behaved amazingly well. I am thankful for it. We must have gotten the balance right. We spaced out everything related to the launch of Recognise ME well. That allowed for socialising and sight-seeing according to the rules my physical being sets out. It is something we have learnt and practiced in the past few years, a bit late considering I am now 52. With the right support I could have reached this level of functioning a lot earlier, regardless of diagnosis. The difference lay in the attitude of doctors, therapists, nurses and the like. I now have a team who believes me, believes in me and treats me with respect and dignity. The results are tangible. That is my wish for every patient. That is where my passion in writing the book and getting it read lies. It seems to have become infectious. During the launch as well as the talks that followed to Quaker Friends and to staff and students at the University of Leeds, I could see people listening with intent, gaining insight and jumping on board. For me, the plea in the title of my memoir Recognise ME has taken root. I am trying to navigate the path to being humbly confident and confidently humble. I have certainly received recognition, and I feel fellow-patients have too. I have heard from them in question and answer sessions, and privately, and their stories have touched me deeply. They give me the drive to carry on, to speak for them as requested, until they find their own voice. My vision that the community of patients with chronic, rare, barely visible and/or fluctuating conditions gets a better deal is gaining momentum. I have joined the chorus that has been working towards this for decades. Their chants have too often fallen in deaf ears. The more we sing together, the more we are likely to be heard. There is something miraculous in being part of that, which is hard to describe. Still, the effort involved takes its toll. It has been important for me as well as my husband, who also functions as my main carer, to ensure we looked after ourselves. We have been well-supported in doing so. Another reason to be intensely grateful! We leave with memories of warm connections and beautiful places. Some of them I can share with you via pictures and videos.
The launch can be watched in its entirety on my YouTube channel. That does mean you might want to skip through the parts that should have been edited out. If anyone is up for some volunteering with things like that, I would love to know.
Part of me feels a need to apologise for skipping a blog piece last week, for keeping facebook posts and responses to those of others to a minimum, for putting some answers to mails and messages on hold. Another tells me it is ok. I can feel you all understand and support the way I have set my priorities to be able to meet the highest demands.
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Anne Stone
29/5/2024 16:24:16
This is a lovely post, dear Anneke! And I am so very glad that all went so smoothly on your special book launch journey in the UK. I SO enjoyed watching your book launch, even the ‘behind the scenes during the break’ bits. It was all just perfect!
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3/6/2024 15:02:26
Dear Anne
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