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Lucy Watts MBE on how she manages her charity work with EDS.

Posted By HMSA Editorial Team, June 13, 2016

After a busy and exciting volunteers’ week, Lucy spilled all to our eager editorial team over the weekend. As we slide into Small Charities Week, we’re delighted to bring you some words from Lucy on managing her volunteering and a hypermobility syndrome (in Lucy’s case, Ehlers-Danlos syndrome, or EDS).

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Picture credit: British Ceremonial Arts Ltd

In the New Years Honours 2016, I was appointed Member of the Most Excellent Order of the British Empire for my services to Young People with Disabilities. Then on Thursday 9th June 2016, I received my MBE in my Investiture at Buckingham Palace, presented to me by His Royal Highness The Prince of Wales. It is a huge honour to be appointed an MBE, especially so given my young age, I’m only 22, and the fact that my period of work hasn’t spanned decades like many others. However, it’s highly unlikely that my life, and my work, will span decades, which makes it even more special to receive the Honour whilst I am at the peak of my work and able to enjoy being a Member of the Order. It is a huge honour to be recognised for my work. My charity, health and disability work gives me a positive focus away from the pain, suffering and struggles I have as a result of my conditions, and the restrictions the conditions and their complications impose upon my life. To have something to focus on, a purpose in life and an ability to use my experiences – good and bad – constructively to benefit others, is very important and a key component of my coping mechanism. Being able to distract myself with my work, and at the same time, advocate for, represent and support others with chronic and complex conditions and disabilities is a great way to use my energy in a productive and worthwhile manner – however limited my energy may be on some days.

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Despite EDS and the severity of the complications it has caused, my life is devoted to making a difference, to make the UK a better place for those with chronic and complex conditions and disabilities. My work involves writing such as blogs, speeches and forewords to booklets; speaking at events; attending meetings and forums; and appearing in videos and on TV and radio. My work has taken me to Parliament where I gave a speech in November 2013, to numerous events at the Department of Health, including co-chairing an event there in December 2015 alongside Jon Rouse, and attending and speaking at many other meetings and events. It has lead me to writing the foreword to four separate booklets, and running a successful blog of my own, with over 200,000 views in 3 years, as well as writing blogs and articles for other sites, including a blog on the Social Care Gov blog, an article for Scope and others. I’ve appeared on TV and radio, including the recent BBC Three documentary Rest in Pixels, and videos I’ve appeared in have been played at conferences all over the UK, and all over the world. I hold permanent positions within four core charities: as an Ambassador and Young Avenger for Together for Short Lives, the first Global Youth Ambassador for the International Children’s Palliative Care Network, Trustee of the Pseudo Obstruction Research Trust and Ambassador for Dreams Come True. I have also worked with many charities and organisations, such as the Council for Disabled Children, the National Council for Palliative Care, Transition Information Network, Scope, National Voices, Think Local Act Personal, and attended meetings of the Children and Young People’s Health Outcomes Forum and the Young People’s Health Partnership. I’m also a member of the Open University Sexuality Alliance. My work spans many topics within health and social care and the areas of illness and disability.

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The Ehlers-Danlos Syndromes and other Hypermobility Syndromes are variable conditions and can be very debilitating. However we must never give up on striving for better management of our conditions, striving for improved functioning and striving for a maximised quality of life. Never give up trying to achieve your goals and dreams, we all have them and it can be easy to give up on them as a result of our conditions, but please don’t. Even if it takes you years to accomplish a goal, as long as they are possible, attainable goals, you must keep striving to achieve them. Never lose hope. I never give up looking for ways to better manage my EDS, to maximise my physical and mental functioning, and I don’t let EDS stop me. Yes I spend almost all my time in bed, but that time is spent working. I cannot relax and do nothing all day, so I’m always working in some form. Obviously I must pace myself, both physically and mentally, but no matter how bad the pain, or the fatigue, or the brain fog, I always make sure I have a goal for each day. It may get broken down into very small bits and take a long time to do, but I never give up and make sure I achieve something every day. When working to a deadline this can be more difficult, but even if it took me hours or days of doing 20 mins work and an hour break on and off throughout the day, I will meet that deadline. I have to work within my limitations. I’d say that’s a key part of EDS/Hypermobility Syndromes; you need to know and understand your limits and work within them, and use your strengths, but always strive for more.

My work takes on many forms and it can be highly variable, and I always have to be conscious of managing things whether it’s a good or bad day. Writing and work at home is more flexible than events, but it’s never stopped me. I have ITU nurses that care for me at home, doing all of my intravenous drugs and TPN (I’m hooked up at least 21 hours out of every 24), to empty and change both of my stoma bags and my PEG drainage bag, to hoist me into my wheelchair when I am able to sit up and do the rest of my care, and we always work my routine so that it works out best for me. I always sleep in the car on the way to or from an event, as it means I have more energy when I get to the event if I sleep on the way there, and then on the way back it allows my body to wind down from the excitement and stress from the event. It’s all the little things that add up. Having a nap in the middle of the day may enable you to function best and get work done; I actually find I’m better off having a longer night’s sleep, and then staying awake for the remainder of the day; that works best for me. I tend to not get to sleep until 12-1am, my body struggles to switch off, and on days where I can I sleep in until 12pm (though I am awake at 7am for my first IV medication to be given before going back to sleep) and then stay awake the rest of the day. It seems to work best for my body, when I am able to do that and don’t have an event, appointment or visit/meeting. It’s all about finding out what works best for your body and working out the best routine for yourself.

If you would like to get into the same kind of work I do, as I get many messages asking me how I managed to get where I am today, it’s to attach yourself to a charity doing work you’re passionate about, finding one who would welcome your assistance, or start volunteering at places if you’re well enough to do physical volunteering. The more of a voluntary CV you build up for yourself, and the more positive exposure you get, the further your voluntary ‘career’ will progress. Make sure it’s something you are truly passionate about, something you will be willing to work on even when you can’t be bothered, or willing to research and absorb information even when you feel you’ve learnt all you can. Without fiery passion, you will struggle. It takes an awful lot of self-motivation, self-discipline and determination and you will have to put in an awful lot of time and hard work, but the benefits are wonderful and the great satisfaction it brings is a huge reward in itself.

Having a blog can also be a great way to gain exposure, support and may lead to opportunities; my blog certainly has. On my blog I talk about my own experiences a lot, but in the context of a very current topic in healthcare, social care, illness or disability. To learn more, and to get inspiration for new blog topics, I am always researching different things in health and social care and disability, keep in touch with the news, looking at government, charity and other relevant websites, following relevant people/groups on Twitter, signing up to newsletters and adding to my library of documents etc. I keep my finger on the pulse in the field my work takes place and use it for ideas for my blog. It’s about making the most of every moment and always being on the lookout for your next idea, article or topic. It still takes a lot of hard work and dedication though, you need to post fairly regularly to keep interest, and to put it in perspective, on average for every complete blog post I write and upload, there’s at least four blogs that never make it to completion or aren’t posted. You can even blog about something totally unrelated to illness or disability; fashion, food, animals, photography, and even make vlogs (video blogs) – it’s completely up to you.

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I hope my MBE and my work will show others that you can overcome your conditions, you can achieve, you can have goals and live a fulfilling life – if only you are prepared to put in the hard work. I am constantly working in one way or the other, from writing blogs or articles, reading and doing research, staying in touch with charities and doing whatever project comes along through them, organising to attend events such as having a driver and sorting my nurses, networking with others on social media and so on. It’s a full time job, but it gives me a positive focus. I do hope this blog is both inspiring and useful in equal measure. EDSs and HMSs are debilitating conditions but we must never give up on our goals and always keep striving for better and for more. Having one of these conditions does not mean you cannot achieve – even those who are bed bound, as I am 99% of my time, we can still achieve and do things. Never give up trying, and never lose hope. If you work hard, you never know what, and just how much, you are able to achieve.

Lucy Watts – MBE

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