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New Year; 2019

I hope you all had a lovely Christmas and New Years. I had a pretty busy time with lots of festive fun and lots of hospital appointments to help me get as healthy as I possible can be. We then had all the family come to us on Christmas Day so there was a lot of prep to get done for that. We had so many people we had to put two dining tables in our living room to fit everyone in! It was lovely.

Then between Christmas and New Years, we did a lot of sorting. My husband and the guys in the family build a kayak storage in the garage and my mum and myself finally got my office sorted. We have only been in the house six months and some how my office was the last room to get any attention! It was a mess and I did not really enjoy being in there. It has mean that not a lot of writing has happened at all sadly.

I am so happy how the space has turned out. It is now a place I want to be. At first I was rather overwhelmed at having such a luxurious space, a space all for me and what I enjoy doing. Not only do I enjoy writing and illustrating, I also love to knit and sew.  My parents and husband reminded me that I can’t always leave the house due to my health so I might as well have a room I can enjoy and be productive in.

I’m not really a big fan of celebrating the New Year so sorting my work space out was a great way for me to welcome 2019. I am so glad that I feel confident in celebrating things the way I want to not how you think they should be. I am really not a fan of all the new year new you hype. I feel it set us up for failure. I prefer setting goals. I have goals for my writing, my physio, my hobbies and even the house. I find them a lot easier to manage and easier to achieve.

However you celebrate for the new year, I hope you enjoy it and 2019 is filled with love, laughter and joy.

My other full time job

Things have been a bit quiet on here. I apologise. I have been working at what I consider my other full time job; my health. I have a rare genetic condition called Ehlers-Danlos Syndromes (EDS) which affects my connective tissues. This is the ‘glue’ that holds the body together. Secondary to this condition I have Postural Orthostatic Tachycardia Syndrome (PoTS) believed to be caused by the EDS.

 

 

PoTS comes under the umbrella term of Dysautonomia. This describes several different medical conditions that cause a malfunction of the Autonomic Nervous System. October is Dysautonmia awareness mouth. (I believe there are several conditions that October is awareness month to)

 

The Autonomic Nervous System and what it controls

 

As you can see it can pretty much affects any part of your body. For me, my type of PoTS means as I move, particularly when I go from laying down to standing, my body can’t keep the blood from draining to my feet and staying there. So that is the ‘Postural orthostatic’ part of PoTS. The tachycardia comes from my heart trying extra hard to pump the blood back to my brain where it is needed. Syndrome just means collection of symptoms grouped together. This includes trouble with your stomach and getting headaches etc.

 

Stick man with PoTS

 

There currently isn’t a cure, you have to learn to manage your symptoms. As they can be numerous, I see lots of different specialists to work out the best way to manage my health. It means I have to coordinate my own care as there is no single specialist or department that does. As I have now moved to a new part of the county, this is means lots of meeting new specialists who often have never meet anyone with EDS or PoTS. I like to teach others about it where ever I go because it took me a long time to get the right diagnosis. Having the right diagnosis meant being able to treat and manage your own health. Not having that ‘label’ can and unfortunately often does end up with you feeling alone, dismissed and can make you a lot worse. It is what inspired ‘The Fairy Tree’ story that Daisy’s mother shares with her on their walk. The journey of feeling lost and scared to finding your way home.

 

Illustration from The Fairy Tree by Hannah May Hocking. All rights reserved

 

So why share this? Well it is part of me and does influence and inspire my writing. I also want to help spread awareness so others in the future can get diagnosed quicker and looked after by medical staff who feel confident in caring for them. Maybe one day there may even be a cure. To those who suffer, you are stronger than you ever imagine you are and are not a burden. Do not let others or yourself tell you otherwise.

Love and gentle hugs to all my fellow chronic illness warriors and those who love them.

Celebrating achievements can be hard sometimes

My book, The Fairy Tree, has been officially out now for just over a week. I am in complete shock that not only do I have a book that is now for sale, but people actually like it! I know that sounds a bit ‘tortured artist’ but I think when you have been working on something for just a little over a year, you can sometimes only see the flaws. This has at least been the case for me. So it is nice to take a step back and see that you have created something to be proud of.

I have had a lot going on since saying ‘yes’ to Ayn and joining her publishing company. I have completely relocated to a different area which could not be more opposite to where we were living (in a good way though.) My husband has dramatically changed the way he works and I am now getting to grips working as an author and illustrator. (In fact just typing that seems really su rreal!) We only now just feel like we can catch our breath.

 

 

Anyway, I’m telling you all this so you understand when I say I was severely lacking in motivation to celebrate the fact I was launching my very first book. I was exhausted. In fact both my husband and I were. It all seemed way too much effort to mark the occasion. Thankfully I have a wonderful family who will not let me shy away from celebrating any achievement in life. Big or small, and for that I am eternally grateful. Sometimes we need someone else to push us along and point out the accomplishments in life and celebrate them with us.

 

 

It was not the smoothest of launch celebrations, first just getting everyone in one place is a challenge. Especially when the main lady who helped make this book a reality lives all the way in California, USA. Unfortunately although she was in the country, she was caught up last minute with meetings for her own book and couldn’t make it. Then my brother and his family were struck down in the early hours of the Saturday morning with the dreaded sickness bug along with most of their friends and neighbours! So in the end it was a small afternoon tea party with my parents, parents in laws and granddad. I have to say when you are feeling overwhelmed, this is definitely a lovely relaxing way to mark an occasion. I am very much more a tea and cake kind of person than cocktails and evening gowns.

 

 

After the launch I started to get messages and feedback about the book from people who have had nothing to do with the making. So far it has been so sweet and lovely. I am collecting a few together for a future blog post. If you want to send me something, please do.

And finally I want to say thank you. Really, I can not thank the people who have already bought my book and recommended it to others for their support. I truly could not do this without you.

 

 

How I came to write ‘The Fairy Tree’

Tomorrow my very first book is launched. It is a day I never dreamt would happen. A week ago when a lady on instagram asked me “please tell my why you wrote this book?” which is something that I hadn’t given much thought to.

 

 

I sat and thought about it for a while. It struck me as an interesting question. It wasn’t ‘what influenced me’ or ‘what inspired me’ it was a straight forward to the point ‘why?’. Why make this book?

The answer is fairly straightforward in the end; I wrote this story as a way of coping with my diagnosis with the genetic disorder of Ehlers-Danlos Syndrome (or EDS).

After years of being unwell and getting more and more sick no matter what I did, it was great to have a name for my illness but I had always held on to the idea that I was going to make a full or nearly full recovery and one day get back to ‘normal’ life. I had already left a career in mental health nursing and let my dream of teaching fall by the wayside as my health had worsened. Now as it sunk in that there is no cure for it I couldn’t see how I was ever going to have the life I wanted. It was a pretty dark place.

My mum reminded me of my love for making up stories when I felt upset and this was what I did. As I lay in my garden which had a tree at the end with a hole you could see all the way through, this story took shape.

I then thought, ‘you know what the other thing I liked to do as a child especially when I didn’t feel so great? Paint.’ So next I got out my water colours and started painting.

The reason this is now a book is thanks to a dear friend, Ayn Cates Sullivan, CEO of Infinite Light Publishing. When visiting the UK (she is from California, USA) she saw my work and fell in love with it.  She said it needed to be a book. I wasn’t so sure at first. With my health being so fragile and me being some what of a shy person, but she can be very persuasive!

 

Ayn Cates Sullivan and me in my garden

 

So that is it really. This book was born out of finding away to deal with something I could not control. Much like in this book, I felt so very lost and hopeless but I found a tiny dot of light that helped me find my way back to my old self in some way.

 

First pages of The Fairy Tree

 

I do hope you enjoy reading it.