Of Course I Struggle; I Just Don’t Quit
I have always been a very creative person and when I was diagnosed I felt like that too was going to be taken away from me. I couldn’t work as well with my fingers and hands so crochet, knitting and cross-stitch were very difficult for me and the love I had for painting and drawing diminished because I just felt like I couldn’t give it the same energy any more. I have realised over the years though, that writing and photography are where my creativity now sits best and they also appeal to the sentimental side of my personality.
2020 was definitely not the year anyone thought it would be. We all had the “2020 experience” in a variety of different strengths in all parts of our lives.
Like many of you reading this may be, I am someone who is in the “high risk” category and it’s most definitely been a very difficult year. The fear of something ending your life and taking you away from your family in your early 30s is not something that you can easily digest every day.
I have at times, like many I’m sure, been very frustrated with other people’s attitudes towards our relentless global state, seeing how people were reacting to restrictions, not realising that they were now living life like the chronically ill have had to for many years. I’ve come to realise that in order to keep my sanity, I can’t change their attitudes or thoughts but I can choose how I react to them. I decided, then, that it was time to focus on myself and my family, follow all the safety measures put in place for our current “predicament” and do what is right in our view.
When I started 2020, I was the most positive I had been mentally going into a new year in quite a number of years and I had a strong focus of what I wanted to achieve, and then 2020 gave the finger to us all.
I didn’t want it to be a “wasted” year; chronic illness has already taken so much from me in the past eight years and as much as I felt I had grown mentally and within myself, I still wanted to do something from my list.
I had been sitting with an idea for a children’s book for about two years and back in March 2020, when the world went to hell in a handbasket, I started to put my idea to paper, so to speak. I wrote a quick synopsis so I could make sure I had a fully realised story and I picked names and characters. I decided then to actually start writing the story. Between May and August 2020, I went through a bit of a personal slump; I felt depleted by life and how relentless everything was seeming. In that time, I would open up my document for my book, I would re-read it but mostly I just stared at it on the screen and ultimately would just hit the “x” button at the top of the screen. I didn’t have the energy in me to care about something for myself; I was back to a place in my head where I felt like there was no point in trying because in my past experience, dreams are crushed by life. I could hear all the haters who have told me that “you’re not really ill if you can do x,y,z” or that the reception of it would be overlooked by the fact that I was chronically ill. I knew at this point I needed to focus on getting back on track with my mental health and that was the most important thing.
I have weekly counselling sessions; I have done for the last sixteen months as I am a huge advocate for mental health and wellbeing. My counsellor is a very wise lady and said to me “What do you mean by ‘What’s the point?’? What does that statement mean to you? Then ask yourself this: Is it an explanation or is it an excuse?” I then broke it all down, realising that when I said this to myself it was fuelled mostly by frustration and fear. The saboteur in my head was taking me back to past places in those moments and I kept forgetting that this is me now: not school years me who was bullied, not 15-year-old me who never felt good enough, not 21-year-old me who was stripped of everything positive within myself in an emotionally abusive relationship. This was 33-year-old me who had come through it all, built an amazing relationship with an outstanding human being, who had created and was raising two children she never thought she would have, let alone be able to raise so well, this was surviving chronic illness me, this was Warrior Me, Not Worrier Me. After some deliberating within myself, I decided to take a leap of faith. I finished the story of my book and with the help of my very talented partner-in-crime, I self-published my very first children’s book.
The book means a lot to me in so many ways. It is proof that no matter what life has thrown my way, I can keep moving forward. It is proof that when I was told “You’ll never amount to anything, you’ll always be a nothing”, those words were not mine to take on board but for the insecure human being who said them. It is a part of the journey I have taken in the last two years in finding my way back from losing one of the biggest loves of my life, my dog Vader. It is, pardon the pun, the start of a brand-new chapter for me and my family.
Since the end of 2020, it has been a very exciting and yet nerve-wracking time for me. I’ve faced a lot of negativity in my life and harsh criticism and it’s very daunting to think that I could be doing something that will invite more of that in to my life. However, I believe in what I’m writing and all it means and if it helps even one child or adult feel better, to smile when they felt they couldn’t, then it will all be worth it.
My debut book is called “How to Rest on A Rainbow” and it is now available on my website Made You Loch. You can also find it on Amazon in e-book and paperback form as well as on Google Play Books. It is in loving memory of Vader Hanslow, my doggy soulmate who absolutely changed my life and my heart. You can read more about my connection with him in my M.E. Support article Pets and Chronic Illness.
I created the book so that everyone can enjoy it; I don’t want anyone to be excluded from this journey. I have made sure that it is dyslexia friendly for both child and adult, it is spectrum friendly and has large point print so that anyone who is classed as visually impaired can enjoy it also. In the e-book and digital formats, the book is “text to speech” enabled as I am aiming to make sure this book and my upcoming book have audio versions by Autumn 2021.
I have had amazing feedback so far, I have been offered three different publishing contracts, which is absolutely mind blowing; however, upon further reading I decided that they weren’t the right contracts for me and I had come too far to just accept the first things offered to me. The positivity I’ve received has made me write the follow-up book and the story part is now complete. The next part is sitting with my very talented husband, Dan, who allows me to bring the visions in my head on to paper – or screen, really, in the first instance. I couldn’t have this process with anyone else and I’m very lucky that Dan has the skills and ability to help me as he knows me better than anyone and I don’t have to worry about fatigue, brain fog, off days etc. in this process either.
The second book is “How to Fix a Rainbow” and I’m really proud of what I’ve achieved with it. It will be released on 26th March 2021 and more information about the book and pre order details can be found on my website Made You Loch.
Eight years ago, when I was told at 25 that I was going to have life-long illnesses that nobody really understands, I felt like life was pointless, that all my dreams and desires were taken away from me. I hit a very dark place, in between not wanting to live the way I was living but not wanting to die either. I felt completely stuck and I felt like all I was ever going to be was an illness, a failure and burden. I couldn’t see how I would ever amount to anything at the time. After a long time, I realised that I was much more than an illness; yes, I struggle, more than most people even know or understand, but I won’t allow it to take away any more than it already has. The life I thought I was going to have is gone and has been gone for a while; I can’t allow myself to dwell on it. I needed to take things into my own hands and live within my means; I was no longer going to be the veterinary nurse I used to be, but that didn’t mean I was nothing. I can build my own life, on my terms.
Creativity really can be an amazing outlet for those with chronic illness: it can allow you to release stress, tensions and worries, it can take you on adventures without leaving your own home, and it can make connections with people all over the world. M.E. Support has always encouraged creative outlets and its founder, Louise Sargent, recently merged the site with her Photography Portfolio. The M.E. Support Articles Index has a dedicated section for creativity and innovation, which welcomes anyone to write about their story in a form of their choosing.