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Overcoming Obstacles

It is hard to overcome an illness when it imposes so many limitations and treatments/problems demand such a lot of time throughout the day (and night). Some days it seems impossible. I’ve been ill for six years and eight months now; that’s about a third of my life. I have had to continually accept each new symptom and complication and the restrictions they impose on my life. It’s one long grieving process. Just as I come to terms with one thing, another comes along. My illness has taken so much from me, and I have had to search for strength from deep inside myself; strength I didn’t know I had. Somehow I’ve got through each low of my illness, but I lost a lot of who I was along the way. 
It’s taken me a long time to see past my illness. For a long time my illness was all that I had, I didn’t have a life and couldn’t separate who I was as a person from my illness. My illness was my identity. For the first few years I was ill I managed to continue my education at home with tutoring so completed my GCSEs with great grades, and started going to college studying science A levels with a career in medicine in mind, but then that was taken away from me. I went from looking at universities and studying hard to nothing. My illness took yet another thing away from me. I had fought for so long to continue my education, but my illness soon deteriorated and made that an impossibility. I felt useless, hopeless. Once again, I felt I had nothing. That was 2011. I was put on TPN at this point, weighing only 7 stone (at 6ft 1” this is dangerously underweight). I then had a bad 2012, with regular bowel obstructions and hospital admissions, I had my Ileostomy formed (which was a good thing), and then it came time for “the chat”: there was nothing else they could do to help. We had exhausted all options. My lifespan will be reduced, but by how much nobody knows. I think this was really the turning point. I realised that I was not living, I was just existing. Something had to change, and it wasn’t going to be my illness. I had to overcome all these obstacles somehow. 

Then my old dog Ben died, and we ended up getting a puppy who is now our Molly in March 2013. She gave me something to live for, she made me push myself harder than I thought was possible and we enjoyed going out for walks and to dog training classes. I was the happiest I’d ever been with Molly, she really brought me out of myself. For fun, I started a Facebook page for her, and started writing updates about her life and her training, written in Molly’s voice. This proved very popular. With now over 2,400 followers from all walks of life, all around the world, you can see it has been a success. Getting Molly was a huge turning point. She got me out, made me a part of society – people didn’t used to talk to me because I’m in a wheelchair, but now people will come over and talk to me about Molly – and she gave me the confidence to go out alone for the first time. I barely went out before this (except for when I went to college), let alone going out without mum or a carer, and it was a liberating experience. Then Molly was accepted onto the Dog A.I.D. assistance dog training scheme which meant I would be trained to teach Molly how to be an assistance dog, and once we completed the training and passed the assessment levels Molly would become a fully qualified assistance dog, meaning she will help me to be more independent and will be able to come out with me and into buildings not accessible to companion dogs. This will be a huge turning point. 
Through the confidence Molly has given me, I started doing more. I once said to my hospice nurse that I wanted to make a difference, but I didn’t know how. What could I do to make a difference when I am restricted to my bed most of the time? My hospice nurse put me in touch with a charity called Together for Short Lives to be a part of their “Young Avengers” Transition Taskforce. I started writing pieces for them and another charity they put me in touch with, the National Council for Palliative Care. I did little bits of writing and filming for The J’s Hospice too, and the blog I had started in December 2012 took off. Through these, I discovered my talent for writing. Suddenly I had a focus and a purpose. I wasn’t just a “useless fat lump” stuck in bed (I had now put on too much weight as a result of TPN and steroids). I had an outlet for my creativity and thoughts on my blog, and my emotions, which I pour into a journal every day, and I also had something I was good at. I was feeling great. 
I was being asked to write pieces for Together for Short Lives and then was asked to speak at an event in Parliament. Bearing in mind that prior to becoming ill I wouldn’t put my hand up in class to answer a question, wouldn’t read aloud or stand up in front of people, and I hated being the centre of attention, to say yes would be a huge turning point and a major accomplishment. I, of course, said yes, and what a success it was. I haven’t looked back since. My Parliamentary speech has been in many high places and is helping to improve transition services in the UK, including at the main hospital I am treated at. I have given another speech at the Children’s and Young People’s Health Outcomes summit and written for a number of different charities, and I am involved with lots of different projects: I will be doing some filming for CDC, meeting Dr Dan Poulter MP to discuss the transition period and other key issues in healthcare, I have recently designed the new brochures for the Pseudo Obstruction Research Trust (PORT) and will be speaking at an event on their behalf, and I am attending the next Children and Young People’s Health Outcomes summit in September. I am now ambassador for both Together for Short Lives and a wish-granting charity called Dreams Come True. I am also opening the W.H.A.M. dog show and judging a class at Hylands Park in September, this blog is about to hit 38,000 views and I have lots more things in the pipeline. Also, Molly and I winning Friends for Life at Crufts in March was a huge boost and Dog A.I.D. received £1,500 and 1 million website hits after we won. 
I’ve had a bad few months and am very poorly, no longer getting out with Molly or going out much at all, but what has kept me going is my writing and speaking. It gives me a focus and a purpose and I feel like I am achieving. It helps me greatly to know I am making a difference, which is my ultimate goal in life. I want to make my mark on the world and to make it a better place for others; and I’m on my way to fulfilling that dream. Along this journey of acceptance, I’ve found myself. For such a long time, my illness was all that I was. I couldn’t live like that though, I couldn’t be “just” a condition. I searched deep inside myself and it’s taken me a few years to truly figure out who I am. I have confidence in my ability rather than focusing on my disability. I now have a strong sense of who I am. It’s often that through the greatest hardships, we find strength we didn’t know we had and we find ourselves along the way.
Why am I writing this? This is not to boast, this is to inspire. No matter how poorly you are, you need to focus on any- and every-thing that gives you pleasure. Think of all the things you can do, rather than those you can’t. Make a list if you like. Everyone can contribute in some way, no matter how small that contribution may seem. We all have a talent, you just need to find out, and it may take lots of experimenting to find it. Your illness is hard and cruel and I am not denying that, and some days you just can’t focus on the positives, but try. Set yourself small goals if you can, pace yourself, and take your time. Even if it’s writing something for a PostPal, making a scrapbook or making cards, writing a blog, or getting involved with and/or volunteering for a charity, anything that makes you feel good and gives you a purpose. We are all here for a reason, and we have to find that reason. Don’t give up. <3
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  1. Lucy you have so very much and what made you have that is YOU. You are such an amazing and beautiful lady who has done so much for so many. We all matter and yes, life is not fair and in fact sometimes it sucks but we have to overcome and you for sure do that. When I am not doing good I go into your page because u lift me up by your words and your attitude. Give Molly a big hug and kiss and love you both from MN-USA

  2. Lucy i also have EDS and am stuck in a wheelchair with over 100 dislocations a day and gastrointestinal problems among other things. I would love to be as confident ad you and would also love to talk and get to know you xxxx

  3. Dear Lucy,
    WOW! What an inspiration you are. Reading your beautiful writing has unlocked something deep inside me which needed releasing. I'm going to break out my new scooter which has been collecting dust in the house and go and buy some saucepans. More power to your elbow girl…..and any other joint that will stay in place. Sending love and belly laughs.

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