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).
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.
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.
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.
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
This volunteers’ week we’ve been sharing the stories of some of our team over on our social media, they’re a varied and talented bunch and we simply could not function without them. They do everything, our busy social media team are all volunteers. Our group leaders are all volunteers. Our shop, helpline, fundraisers, finance team and so on? All manned by volunteers.
Our Information Standard process is a labour of love, but guarantees the health and social care information we provide to patients and the professionals who treat them is up to date, relevant and evidence based. The volunteer in charge of this work is Cathy Board. She tells us all about her time working with us.
“It’s 3am and once again I’m sat here wide awake! I know that by 7am I will be barely able to keep my eyes open but need to get my daughter to school, so will say goodbye to sleep for another 18 hours! However, I can now put my early morning (I’m bright as a button but it’ll only last a couple of hours) window of energy to good use and take a look to see what’s happening with the HMSA.
I’ve been a volunteer now for a couple of years and started as Deputy Group Leader for the Hampshire area support group. I quickly grew in confidence and took over the role as Information Standard Coordinator and I have to say I am now passionate about the HMSA charity, what it stands for and constantly amazed by what we achieve – we’re all volunteers with a Hereditary Disorder of Connective Tissue (HDCT) and we really make a difference.
My former life (before EDS became a real problem) was in the corporate world in Human Resources. I really loved my job and got involved in all sorts of projects like Investors in People and ISO9000, so when I found out that the HMSA had the Information Standard accreditation I really wanted to get involved. I then took on the role of IS Coordinator which I really enjoy. I’ve learnt loads and also had the opportunity to put my skills and experience to good use.
I had to give up working when I was in my early 30s after trying to hold down a part time job for a few years, but failing miserably. The thing I found most difficult about not working was that it felt like I’d lost my identity. The first thing someone asks you when you first meet them is – “what do you do?”. I used to dread that question as I didn’t know how to answer. The short reply of ‘nothing’ gives entirely the wrong impression, yet the actual story is somewhat long-winded and I find it difficult enough to explain to family and friends, so talking to a complete stranger who wasn’t expecting your medical history is not just distinctly odd, it’s inappropriate and leaves everyone feeling slightly awkward.
However, now my reply is “I volunteer for a charity called the HMSA who provide advice and support for people with Hereditary Disorders of Connective Tissue. “ and the conversation begins…..
There are so many great things about volunteering for the HMSA, to explain them would produce a script of mammoth proportions. So, instead I’ve listed some below.
* Its a great feeling when you feel you have helped someone who is struggling. I personally can’t go on the helpline as I have a phone phobia, but I love doing events in our local area. We have a stand and spend the day talking to both the public and professionals.
* There is no pressure at all. It is made very clear that health and family etc come first. We all have a HDCT and completely understand the difficulties each of us face. The charity promotes self-management of our conditions and they practice what they preach. We look after one another.
* I’ve learnt so much about all of the HDCT conditions which has been interesting and valuable in learning to manage my (and my daughter’s) EDS.
* I love being part of a team again. Although we all work remotely, we are amazingly effective at working together, using things like facebook, skype, email etc. Also we have such good fun, you feel a real sense of belonging to something.
* The thing that I have found to be a huge benefit, is the support that I get from everyone. We have a specific facebook group which we all post to if we need some support – with absolutely anything, not just HDCT or Charity related things. We have people who know as much, and often more, than some medical professionals. We are also highly respected within the HDCT medical fraternity and seen as experts in our conditions. There is always someone around (and a high proportion of insomniacs!) who you can talk things over with.
I would recommend volunteering for the HMSA to anybody who has the capacity in their lives to do something, no matter how small. There are opportunities from doing things just as and when you are able to – could be an hour a month – right up to team leader roles where you can be involved in the decision making and future direction of the charity.”
If you think you could be a part of our team, contact Brenda on email@example.com
As the International Ehlers-Danlos Symposium convened in New York at the beginning of EDS Awareness month, we asked you to speak up about the invisible effects of Ehlers-Danlos that aren’t shown in your happy snaps and holiday shots, after all if a picture can paint a thousand words it can easily hide as many more.
By the time the Symposium drew to a close on Wishbone Day we had more than enough for the whole month, so as May comes to an end we’ll put the published ones into an album and will continue to add to them over the summer. After all, EDS doesn’t disappear in June and those invisible symptoms will stick around too.
Since we have to wait a while for the Symposium’s working groups to reach conclusions we’re also seeking your thoughts on the beautiful “Accounts of HMS” launched this week by Amy-Fern Nuttall. If you haven’t got your copy yet, you can order it here.
A percentage from each sale comes to the HMSA (over a hundred of our members participated in the project, showing the human side of hypermobility syndromes) so it’s a worthwhile read, with a bunch of classy photos and all in a good cause!
While you wait for it to arrive we’ll leave you with a few of those #MayWeSay images.
#EDSAwareness #EhlersDanlos #MayWeSay
“Accounts of HMS” is the exciting conclusion to a delicate and involved project developed with HMSA members over an extended period by photographer, Amy Fern Nuttall. You can get your copy here.
The HMSA are delighted to have supported this work and very much hope that it will be read by those people who need to better understand the impact these conditions can have on the people who have them, their families and friends.
A percentage of proceeds from each sale will be donated to The HMSA.
“Accounts of HMSA” includes interviews and portraits of participants, in addition to:
Understandable explanations of each condition, their causes and their symptoms.
A note from HMSA.
A breakdown of the Brighton Criteria and how it compares to the Beighton Scale (including handy illustrations).
Explorations of all the findings discovered by conducting this research
And much more content designed to clarify your understanding of Hypermobility Syndromes, and their effects.
More from the author below…
“Accounts of HMS was produced with the support of HMSA and the contributions of over 100 participants. A sample of volunteers were photographed and interviewed across the UK, with the aim of showing the human face of HMS, which is so often consigned to text about genetics and diagnostic techniques. Instead, Accounts of HMS invites the reader to consider what it is like to live with a condition, which is commonly invisible to the naked eye. Many participants recounted discrimination due to the inconspicuous nature of their syndrome, describing incidents in which their hidden condition had led to disputes on public transportation, disbelief in the workplace, and even kepticism with doctors unfamiliar with the syndromes. “Because you can’t see it, people don’t know it’s there,” explained one participant. “Because you can’t see it, people don’t understand it, so you don’t get the support,” explained another.
A reoccurring topic throughout these discussions was the difficulty of adapting their jobs to accommodate flare-ups, chronic pain, injuries and fatigue. Various participants had to undergo a complete career change due to the effects of HMS on their work life, with many opting to work part-time; using what spare time they had to recover from a working day, or even using holiday pay and overdrafts to pay for sick days off from work.
By communicating with so many people diagnosed with Hypermobility Syndromes, and through personal research, Accounts of HMS covers a broad range of findings, from the impact on social lives, to the reluctance of male participants to discuss their condition. What became most apparent through the development of this book was how environmental and psychological factors affect living with the syndromes just as much as the biological and physical aspects.
Personally, I found the process of hearing from others and sharing experiences of living with HMS essential to my understanding of the condition, and thus provide relief that others feel the same way and share the same stories. In this context, I hope that this book will provide others with the same knowledge and support, which is fundamental to the management of Hypermobility Syndromes, as well as covering the day-to-day aspects and effects on lifestyle, which is sorely lacking in HMS literature.”
Dr Alan Hakim and Professor Rodney Grahame who many of you will know, and who have both given huge support to the HMSA and those with Ehlers-Danlos syndrome over the years, were both key speakers at the EDS Symposium in New York.