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Monday, 13 February 2017

For The 49,000 - House of Commons Reception for Together for Short Lives

On Tuesday 7th February 2017, I attended my third event at the House of Commons for Together for Short Lives, with the theme of #forthe49000. The event was hosted by Stuart Andrew MP. A fantastic day was had by us all. I attended along with my Assistance Dog Molly, my mum, my nurse and my Uncle Ray who drove us. We had a very enjoyable day, got plenty of photos, and I got to see lots of friends and people I know through my work and the charities I am involved with, as well as to meet two other Young Avengers (young ambassadors) who I know through working with them on projects, but had not met in-person until Tuesday. 

This year's theme was the launch of the All Party Parliamentary Group for Children who need Palliative Care, as well as to propose seven key areas for the Government to invest in children's palliative care. The event was well attended, with parents of children with life-limiting conditions, young adults with life-limiting conditions and hospice and palliative care professionals being joined by over 50 MPs and Peers.

Barbara Gelb OBE, CEO of Together for Short Lives, proposed the following calls that she asked of the Budget to invest in children's palliative care:
  • Adequately fund children's palliative care to meet demand.
  • Giving young people dignity and respect - bridging the cliff edge in care between children's and adult services.
  • Supporting Managed Clinical Networks (MCNs).
  • Ensuring nursing care today and tomorrow. 
  • Preventing family breakdown.
  • Lifting the baby benefit bar.
  • Care and compassion in bereavement.
(c) Together for Short Lives
At the event, there was a display showing the amount of equipment needed by many under threes with life-limiting conditions, including supportive car seat, specialist buggy, oxygen, ventilator, gastrostomy supplies and feed, medication, suction, spare supplies and more. These children desperately need an adapted vehicle in order that they can leave the house, but the baby mobility benefit bar means they cannot claim the mobility component of Disability Living Allowance until the child is three. This leaves families trapped at home as they cannot claim the DLA mobility component that would allow them to fund a specially adapted vehicle to accommodate the child's needs and equipment. Some of these children will not even live long enough to claim the benefit. It needs to be lifted that young children with complex, intensive, specialist needs can receive Mobility DLA and fund a specially adapted vehicle to allow them to leave the house, enabling them to attend appointments and meetings, but also have quality of life for the whole family, enabling them to leave the house for outings and days out. It's vital the baby mobility benefit bar be lifted - please support the campaign. Other areas covered included improved funding for and access to short breaks, vital to give carers a break from caring, to allow them to rest and recharge their batteries, and to enable family time with other children or as a couple without the child's care needs to worry about or work around, as well as improving the ‘patchy’ care and the postcode lottery when it comes to the funding of children’s palliative care and related services. 

Parent Rachel Thompson shared her story, as her son, Frank, has Late Infantile Batten Disease, a rare, incurable, neurodegenerative condition, robbing Frank of his mobility, his speech, his sight and his ability to swallow and eat safely. He is immobile, suffers from dementia, is fed through a tube and needs assistance with breathing - his care is 24/7, 365 days of the year. He has a life expectancy of between 6 and 11 years old. Frank and his family are supported by a children's hospice, where care is for the whole family - support for Frank and his parents and his siblings. Frank's story epitomises what palliative care is; looking after Frank and the specialist, complex nursing needs Frank has, quality of life and quality of care, preventing unnecessary hospital admissions and the ability to step-down from hospital to the hospice, support in accessing equipment and services, support with fighting for care packages, care around the clock, someone they can call upon at any time for advice or support, the desperate need for - and benefit of - respite/short breaks for the parents, care for the whole family from diagnosis and which will extend to bereavement care when the time comes, quality end of life care when needed - a whole-family approach to care. Rachel's story was very emotional and shows the importance of the work of children's hospices and paediatric palliative care, and of the work of Together for Short Lives in representing the 49,000 children and young people with life-shortening conditions in the U.K. 

It is an honour to be a part of Together for Short Lives, who I have been working with for almost four years now. Parliament holds a very special place in my heart because it is there that my charity work all started, when I gave a speech for Together for Short Lives - my first speech (ever) and the first bit of charity work I did - on the transition period between children’s and adult services. I was one of the original Young Avengers and became part of their then-newly formed Transition Taskforce. It was wonderful that I got to meet two fellow Young Avengers (young ambassadors), Junior and Leah. Junior and I have crossed paths so many times with our work, both through Together for Short Lives and the Open University Sexuality Alliance (OU SA), but we had never met face-to-face before. 

Molly was a little star at the event - well, a big star. She was the Belle of the ball, getting lots of fuss, in fact she was more in-demand than I was! She gained many friends and admirers at Parliament. She did me so proud, and her tail did not stop wagging the whole way through the event. She certainly was a big attraction, and just lapped up being centre of attention. In true Molly style, she thought every round of applause was for her! She was such a good girl doing exactly as I asked, and was very taken with Junior and Leah, doing paws-up on their wheelchairs so they could say hello. 

All in all, it was a fantastic event, it was great to catch up with the people I have met along the journey with my work, highly influential people, and those who have had a big impact upon my work, and this time, for them to be able to meet Molly too. I am so fortunate to have been invited to Parliament for the third time and to have so many wonderful experiences. 

Also, Baroness Campbell of Surbiton (Jane Campbell), a crossbencher, popped into the event. I only briefly spoke to her, and she gave me some words of advice that will ring in my ears in future. She told me not to let professionals dictate campaigns, decisions and how things are run because they don't have experience; we, as disabled people, must be the ones steering campaigns and speaking up. I will always remember this - because she is right, it is us as disabled people who must speak up for ourselves and campaign for our needs and rights. If you don't know about Jane, I suggest you read her story on her website. She's an amazing woman who was instrumental in the campaigns that led to the creation of the Disability Discrimination Act 1995, and has campaigned, run and managed charities and organisations including being a Commissioner in the now-defunct Disability Rights Commission. She is currently a crossbencher in the House of Lords. She is an inspiration to me in many ways, not because she's disabled, but because she used everything she has to advocate, create change, campaign and make a difference. She is a role model to me, she shows me that anything is possible if you work hard, and shows how powerful our words and actions are if we use them to the fullest extent. So to be able to speak to her, albeit briefly, and to have her words forever in my mind, was a massive boost. I will go forwards with renewed determination. 

Friday, 20 January 2017

Lucy & Molly - BBC Essex Interview (Dave Monks Show) - 19-01-17

Here's the video from our interview on the Dave Monks Show on BBC Essex. 

Thursday, 19 January 2017

Molly Awarded the 'Animal OBE', the PDSA Order of Merit

In October 2016, on a sunny, day, we had a very important visitor. Jan McLoughlin, Director General at the People’s Dispensary for Sick Animals (PDSA) came round to present Molly with a very prestigious honour. In the same year as I received an MBE in the New Years Honours, Molly was awarded the animal equivalent, the PDSA Order of Merit. She became only the fourth dog to receive the award. It recognises her outstanding devotion to me, as my companion and as my Assistance Dog. Below is the video of the presentation, and click here to go to Molly's award story on the PDSA website. 

Molly has truly changed my life. She came to us as an eight week old puppy, and transformed my life, from one spent in bed except for when I attended hospital appointments, to getting out and about and having a life again. Once we got Molly, I was getting out to walk her every day. Not only that, people who were previously too scared to talk to me were striking up conversations with me about Molly. I was also gaining in confidence, too, and so would start conversations with fellow dog walkers. My life was completely changed, from one spent trapped in the four walls of my room nearly all of the time, to getting out every day, and having a life again. I was taking Molly to dog training classes every week too, meeting new people and having fun, for the first time in a long time.

The confidence Molly gave me led directly to me accepting to speak at a reception in Parliament for Together for Short Lives. Despite Molly not being there with me, where I had been getting out, meeting people and rapidly gaining in confidence as a result, it meant that I had enough confidence to give the first speech I’d ever given, in Parliament, to around 100 people comprising MPs, charity representatives and eminent hospice and palliative care professionals. It was a huge success, and I have not looked back since. I currently hold 7 positions within charities, have written blogs, articles and forewords, have given a number of speeches at events and meetings, appeared in and presented charity videos and appeared on TV and radio. My life has been taken a direction I could never have foreseen or ever imagined.  My charity work, which happened as a result of the confidence Molly gave me, led to me receiving an MBE in the 2016 New Years Honours for services to Young People with Disabilities. I would not be Lucy Watts MBE if it weren’t for her.

However, Molly had an even more extraordinary destiny than to just be my pet. When she was ten months old, Molly was assessed and then began training with Dog Assistance in Disability (Dog A.I.D.) to become my Assistance Dog. Dog A.I.D. help disabled people train their pet dog to become their Assistance Dog, by pairing them with a volunteer trainer who helps them to get their dog to the required standard and to pass the three levels of training. Molly and I thrived on the training, I loved the fact I was training her myself with help from our wonderful trainer Midge, and things were going so well. Molly and I won Friends for Life at Crufts 2014, being voted winners by the public, and Molly was awarded a Dogs Today Medal.

Despite lots of setbacks and time off with my health, Molly and I passed the Level Three assessment and gained Full Assistance Dog Status on the 6th September 2016, so Molly can now come everywhere with me and assist me, and we have our ID booklet and Molly has her posh working jacket. Molly makes such a difference to my life, giving me confidence and allowing me to be less dependent on those around me, and I love having her beside me as I go about my life. She can completely undress me, including my hat, scarf, gloves, coat, jacket, top, trousers, underwear and socks. She fetches the post, picks up dropped items, fetches named items, passes notes between me and my mum or nurses, fetches help, loads and unloads the washing machine, closes doors and will pull my blanket off my lap if I get hot, amongst other things. Molly also alerts me three to four hours before my temperature spikes, giving me a vital warning that I will become poorly, since I don’t get signs or symptoms of an infection until I have developed or am scarily close to developing sepsis so the warning gives me time to act. She wasn’t trained to do this, it is something she does naturally.

I love having her beside me every day, making me less dependent. She is a welcome guest at my charity events and meetings, people love having her there, and for me I feel less like a burden. If I get hot, Molly can take my coat or jacket off, or pull my blanket off my lap, without asking someone to help me. If I drop something she will automatically pick it up, saving me from asking my nurse to pick things up time and time again, leading me to constantly apologise for dropping it. For Molly, all of this is a wonderful, fun game, she loves doing it, so I don’t feel bad when I drop something for the twentieth time, or I suddenly get hot and want to take my jacket off. She makes me feel less of a burden.

Molly changed my life, and is the light of my life. She was the only reason I kept going when mum was diagnosed with a brain tumour and suffered a stroke after the operation, she is my focus to keep going when I am poorly or in hospital, and when I am feeling down, she is there bringing comfort, company and I can stroke her and she will even lick the tears off my face when I cry. Walking her every day gives my day structure, and I love it so much. She makes me smile and laugh, and she keeps me going. Now, she’s not just my dog, but my four legged carer. Molly also has her own blog, with over 3,700 followers. She brings light and laughter not only into my life, but theirs, too, through sharing her adventures and antics with her followers. You can follow Molly’s Facebook blog here - Molly, Dog With A Blog

Molly is my life, and she is a dog in a million. I am so pleased that the PDSA have recognised just how extraordinary she is, and that they think her worthy of an award such as the PDSA Order of Merit. To be only the fourth dog to have received the award, it just shows how special she really is. 


The PDSA runs a world-renowned animal honours programme, which included the animal version of the Victoria Cross, the Dickin Medal, for military animals, alongside awards recognising non-military animals for their outstanding devotion to duty and/or their owner. Molly has become one of an elite group of animals recognised by the system.


Press articles:

Daily Mail
Dogs Today Magazine
K9 Magazine

Friday, 30 December 2016

2016 - Reflecting On A Year Of Incredible Highs and Terrible Lows

Customary to me, this blog reflects on what has been a very mixed year. Incredible highs, the highest of highs, and yet deep, dark, terrible lows. How can a year be so bipolar? So good, yet so bad, all at the same time? One I will always remember, but remember for the best and worst of reasons. 2016 has not been the best year for society either, with Brexit, budget cuts, the steep drop in the value of the pound, Trump's election, all the terrorism and war, and the loss of so many great people. I'm not the only person who will, in some respects, be glad to see the back of this year; I am just fortunate I have wonderful, exciting reasons to look back on this year too. 

None more exciting, joyful and proudly and fondly looked back on as getting my MBE. I found out I was a recipient on the 30th November 2015, had to keep quiet until 22.30 on the 30th December, when the 2016 New Years Honours List was published in the London Gazette. Despite a rough start to the year, between February and May being a difficult, worrying and scary time, I recovered enough to enjoy my investiture at Buckingham Palace on the 9th June. What a day that was. My day at the Palace was magical from start to finish. I wasn't 100% so felt extremely poorly where I had to keep my legs down - normally they are elevated at 90* in front of me - but nothing was going to prevent me from enjoying my special day. Going into the ballroom and turning, bowing my head to His Royal Highness, The Prince of Wales, driving up to the dais, and seeing Prince Charles step off the dais to hook my medal on, and so he could talk to me from my own level. He asked me about my work, genuinely interested and appreciative of my work and my achievements. He told me to keep up the good work, complimented my wheelchair, then shook my hand, I reversed, bowed, turned and exited the ballroom. Those few minutes with Prince Charles I will never forget - nor the feeling of shaking his hand. It was such a special day, and how many 22 year olds could say they have been awarded an Honour from the Queen in the New Years or Birthday Honours? I'm incredibly lucky. 

That said, I have worked tirelessly, to the point of making myself ill, to achieve what I have; I wasn't awarded an MBE for nothing, or by putting in a few hours here and there. This has taken 3 years of dedication, determination, self-motivation, tireless effort - blood, sweat and tears as the saying goes - to get to where I am today. I devote at least 5 hours every day to my work; that's what it takes to get to the stage I am at. You can't do this work unless you are dedicated and committed and prepared to put in the hard work. It's so rewarding, but it takes a lot of hard work in the background to succeed.  So my advice to anyone looking to get into the work I do, is to work hard, get yourself out there, make people aware of you and how you want to help, and only do it if you're doing it out of love, driven by passion; if you're doing it for recognition, you'll never succeed. It's got to come from within, from a desire to make a difference, and from a fiery determination to keep going even when you are struggling or can't be bothered. There's a lot of hours of unseen, unheard, often unrecognised hard graft, and you will need the passion to drive you to get you through. However, when you succeed, and your work is recognised; it is wonderful. It makes it all worth it, and keeps you determined and passionate to continue to work and continue to make a difference. So my other bit of advice is there is always something you can do, so get out there and do it, use your strengths and talents and get started! 

The lows of this year, mum suffering a 15 minute seizure out of the blue, after doing so well in her recovery from her brain tumour removal surgery and the complications which were a brain bleed and stroke in May 2015, which was devastating and by far the worst thing I have experienced, as I witnessed the whole of February's seizure, from the twitch in her hand through until the paramedics took her out to the ambulance. She turned blue where she was choking on her saliva, her arms clamped against her chest, eyes rolled back in her head, and stiff as a board with some twitching. I thought I was losing her. She has since had three more seizures, sadly, despite medication to stop them. Then, only weeks after mum's seizure, I developed sepsis (septicaemia) from an infection and had three admissions to hospital, two of them in a very serious and critical condition, but I received substandard, even dangerous care from the hospital I was in. They were putting my life at risk, refusing to take advice from my London specialists, leaving me 48 and 79 hours (respectively, in the former and then latter admission) without so much as a drop of fluid, let alone IV medication or antibiotics or TPN, but then refused to transfer me to my specialist hospital, and I was discharged, readmitted, discharged, despite not being better, and then finally admitted under my specialist hospital after a bed became available. There, they removed my old, likely infected Hickman line and put in a new one and fought to get me better. I had been unable to bear light or noise, get out of bed or use my phone from February to May, when I finally turned the corner, just in time for my investiture in June.

My charity work had been on hold since January, and I had been unable to walk or train Molly. I reclaimed my place in the NICE Guideline Committee that I'd been chosen for after an interview, a position I had to give up before the first meeting due to the infection, sepsis and the horrible few months I had as a result. I had kept in touch and when they knew I had recovered, they asked me back onto the committee, which I was delighted about. I'm really enjoying my role on the committee. I was also interviewed for, and then chosen to become a member of the National Council for Palliative Care People in Partnership board, a role I am also thoroughly enjoying. Through the NCPC role, I was asked to present a patient empowerment video (see below), commissioned by NHS England to be made by NCPC and the Media Trust, and I delightfully accepted. I am really proud of the final video, it was semi-scripted and I'm not very good at memorising scripts, but I kept going until it was perfect - in my own eyes, the team would say they were happy with a take and I'd say I could do it better! So we would do another take so that I felt happy with my own performance. The feedback from the film has been very positive, and I am very proud.

My other roles, I now hold seven positions including the NICE and NCPC roles, have continued as before. I participated in a TweetChat for ICPCN, and joined in others like the NHS 'PHBs for wheelchairs' TweetChat, another palliative care TweetChat and others. I've participated in the OU Sexuality Alliance meetings via Lync/Skype, I enjoy contributing and helping guide the work and focus ofthe Alliance, writing blogs with Junior and helping disseminate the "Talking about sex, sexuality and relationships" Guidance and Standards. I have continued to informally support others, offering advice, doing research for them, supplying useful resources and being a listening ear. I just wish I could do more, especially for some people who are being let down horrifically by the healthcare, social care and welfare systems. I wish I could help everyone.

My public speaking has vastly improved this year, I worked out a technique which worked well for me, and it's improved my speaking enormously. I gave a speech in September to the Rayleigh Trefoil Guild, which was a success, as well as giving a speech at my Grandmother's church, St Aidan's. Both meetings involved a speech, Q&A and the watching of my Path of Honour DVD of my investiture with footage of me receiving my MBE. I was also booked for my first 'official' keynote speech at the National Advocacy Conference, titled "Be Your Client's Hero", which was an enormous success. I am so proud of that speech. You can watch it above.

In July, I started walking and training Molly again, resuming training sessions with our Dog A.I.D. (Assistance in Disability) trainer Midge, progressing rapidly. We already had our Level One achieved in June 2015, and in August 2016 we achieved our Level Two. Then on the 6th September we passed our Level Three, gaining full Assistance Dog status under Assistance Dogs UK/International (ADUK/ADI). It means Molly is now able to come everywhere with me to assist me, and we gained our yellow ID book and Molly her posh working jacket. She's very proud wearing it! She's a different dog in her jacket. She thoroughly enjoys coming everywhere with me, and as well as physical assistance, she gives me confidence. She loves her job and I love having her beside me. 

This year, I found out that I have some form of degenerative neuromuscular disorder. We don't know which one, but I will have a lot of testing in 2017 to try and find out which one. This is a very scary revelation, as we know my condition is only going to continue progressing and deteriorating. The NMD explains why, when Ehlers-Danlos Syndrome is not a progressive or degenerative condition, why I was born with problems and have deteriorated continuously throughout my lifetime, always getting worse, getting weaker, losing abilities, developing more and more complications, and why I have always become more poorly, more complex and my condition continuously become more difficult to manage. EDS never explained it, and everything was just described as an unusual or atypical presentation of EDS and classed as life-limiting when Hypermobility EDS isn't life-limiting. The NMD explains this, and when the doctor combed through my life and medics history, she concluded that she thinks I might not have EDS at all, but hypermobility as a part of this neuromuscular disorder. I could have both an NMD and EDS, but I could not have EDS at all. So what has become part of my identity, having Ehlers-Danlos, has suddenly and inexplicably changed. It's deeply upsetting knowing that my condition will continue to deteriorate until I succumb to one of the complications of my neuromuscular disorder. It's a scary and upsetting prospect. Much as it is progressively taking abilities away from me, I will not let it stop or defeat me. I have so much good in my life, so many things to do, so many opportunities open to me, and aside from and in spite of my health, I have a pretty darn wonderful life! I have so much yet to do, projects on the go, plans for the future and a life to live; and much as this NMD keeps stealing from me, I will just adapt, adjust, find a new way to do things and carry on with my life and my purpose. 

There have been other highs, some of which I cannot reveal to you all at this time. 2016, as you can tell, has been a mixed bunch, incredible highs and terrible lows. I have high hopes for 2017, and I'd like to share with you some of my aims.

  • I would like to write my autobiography, it's been a goal for a while but 2017 is the year I must get it done. I've also promised my Grandma I will.
  • I would like to do a photography course, to learn how to fully use my camera and to take better shots, learning about lighting, composure, white balance, aperture, ISO, shutter speed and so on. I want to learn how to be a 'proper' photographer and take my photography to the next level.
  • I would love to learn how to code, and how to design websites.
  • I would love to go on a filmmaking course, as I love making videos and have ideas of films and things I would like to make. I'd like to improve my skills and learn the tricks of the trade.
  • To do more media work, especially presenting and commentating. Maybe one day. 
  • To see a project of mine come to fruition
  • To complete the documentary a friend and I are making about my life
  • To achieve Molly's Trick Dog Champion title from Do More With Your Dog
  • To get back into agility
  • To possibly find out what neuromuscular disorder I have
  • And finally, I would like to start speaking professionally, as a keynote, motivational and schools speaker. 

If you feel able to help me achieve any of my goals for 2017, please do get in touch.

I am excited to see what 2017 has in store for us; I hope it is better than 2016. From the view of things so far, it's looking to be a good one - at least it is at the moment, but things change.

Friday, 9 December 2016

Six Months Ago - Looking Back On This Year

Six months ago today I went to Buckingham Palace to receive my MBE from His Royal Highness, The Prince of Wales. Six months since I became a Member of the Most Excellent Order of the British Empire at the age of 22. So much has gone on in that time. 

Six months ago I was just getting over two battles with sepsis (septicaemia) due to infections in my Hickman Line. I had lost most of the build up between finding out I was receiving an MBE, and my day at the Palace, being poorly, asleep or in hospital. However, I was so relieved when I picked up just in time to receive my MBE and have a wonderful day. It is a day mum, Grandma, my nurse Faggie and I will never forget. 

Travelling up to London is a regular occurrence for us. Going up to London to go to Buckingham Palace is a new one! We waited outside the gates in the car, mum did my makeup and then the gates opened and we went in, through the gates and then through into the quadrangle where we parked. We got out and gathered, in the baking sun, in the quadrangle before we went in. It all seemed to go so quickly after that. Suddenly we went in, and in the blink of an eye we’d gone upstairs, I was separated from my guests and mixing with the other Honours recipients whilst mum, Grandma and Faggie were taken to their seats in the ballroom. We all mixed and chatted, I met a lot of highly influential people - albeit most of them were too afraid to talk to me, likely due to my wheelchair, so I had to kind of force myself into a group conversation (oh a joy of being disabled). I know people are uncomfortable around disability and people automatically assume we can’t do anything - I got asked numerous times where my carer was because I can’t possibly be in a room on my own - despite the fact that I was a fellow Honours recipient so you’d have thought they’d have worked out I was perfectly capable to have been appointed an MBE at the age of 22. I didn’t let it deter me and joined in conversations with fellow recipients. After the briefing we were taken in groups through to receive our honours, I was in one of the last groups to go through. It all went so fast, one minute we were making our way from the briefing room to the ballroom and then into a room beside it, the next I was in the doorway about to be sent in to receive my Honour. I drove in and waited where I was supposed to, when my name and honour was called I proceeded forward, turned, bowed at Prince Charles, drove up to the dias and Prince Charles stepped off the dias and hooked my medal on the hook on my jacket, and talked to me about my work, what I’ve achieved, he complimented my wheelchair and told me to keep up the good work, and then we shook hands, I reversed, bowed, turned and exited the room. I will never forget those few minutes talking to him, a very special memory. My MBE was then taken off me, put in its box and I sat with my family in the Ballroom whilst the final recipients received their awards. Once the final recipient had received their award, the national anthem was played by the live band. Prince Charles then exited, and the investiture was over. I have a DVD of the day to cherish. Just a truly magical day. And I got to meet Sir Jack Petchey, who was knighted that day. I received a Jack Petchey Award when I was 16, so it was lovely to thank him for his hard work. You can read more about my day at Buckingham Palace here

So much has happened since that day. In July I finally got back to my charity work that I’d been unable to do since the January, I pushed on with Molly’s training in earnest and started updating this blog again. My work has truly taken off in recent months, I have been extremely busy and had a wonderful time. 

I was selected for a Lay Member role on a NICE Guideline Committee in February, but had to relinquish this role when I became poorly late February, being admitted to hospital with sepsis the day before the first meeting. So I relinquished the role and thought that was it. I did keep in contact with them and, once I was well enough, I was invited to take up my role on the committee as they had not filled my place. I was delighted, and went to my first meeting in September, and my second on the 23rd November. It’s such an interesting role and I have learnt a lot from the two meetings. It is wonderful to be able to contribute. 

I gained a position on the National Council for Palliative Care’s People in Partnership Steering Group. I have enjoyed this role, too, being able to contribute and I know other projects will result from this role; well, some already have. It’s lovely to get stuck into this role and be able to help guide the charity and its work, and it’s a pleasure working alongside the other members, each bringing a different experience to the role. Through NCPC, I was asked to present a video they were contracted to do by NHS England, this was filmed in October and was first shown at a conference in November. I am really pleased with the finished piece, it was tough remembering the script but I did it! And apparently feedback from people has been positive. You can watch the video here - it's the video quite far down on the page, under the heading of Planning Ahead, titled Getting The Most From Palliative Care.

I delivered the first keynote speech at the National Advocacy Conference 2016, which was a huge success and by far my best speech. It was such an enjoyable event and I was so proud to have been able to take up the opportunity and make it a success. I hope to do more of it in the future, now I have worked out my own way of delivering the best speeches. Early speeches of mine consisted of me reading a speech, whilst trying to connect with the audience - which usually I lacked the confidence to do. Now, I write a speech, then make prompts and take key words and phrases and write sheets of prompts, from which I can use to guide my speech, whilst delivering the speech directly to the audience, connecting with them and don’t hide behind paper. It works really well for me and I have gained in confidence since working out this method, which works out best for me. I have given three other speeches recently, one at the Rayleigh Trefoil Guild, one at my Grandmother’s church about my work and my MBE - and Molly showed off a few tricks too - and one at the hospice young adult group Inspire. I have enjoyed these speeches - usually I am so nervous I forget to enjoy them - which shows how much better I am getting. It’s nice to see progress and to feel confident and able to enjoy giving speeches. 

I have done other things in this time but won’t bore you all silly wittering on and on. I also have a very exciting prospect in the wings, and speeches booked for next year, and other projects that may be possible for me - so things are really looking up. 

Also, on the 6th September, Molly finally qualified as my assistance dog with Dog A.I.D. (Assistance in Disability), gaining our access rights, ADI ID booklet and Molly her working jacket. She started training when she was 10 months old in November 2013, so it took nearly 3 years, with 18 months off with me poorly in that time, to achieve this. Molly’s qualification has opened up a whole new world to us both and I have thoroughly enjoyed having her beside me, helping me and giving me confidence. She has become somewhat of a mascot at two of my committee groups, even the organisers have had wonderful feedback regarding Molly being there. Breaks are spent talking to people about what Molly can do and people admiring how well trained she is; it’s wonderful. She breaks the ice. Everyone loves having her there and she enjoys it. I always worried how Molly would cope with the long settles, as she’s a “doing” dog, she has always struggled with the ‘boring’ aspect of being an assistance dog, where she needs to do long down stays/settles, and yet she qualified and suddenly everything fell into place. She has been to many places, hospital appointments, meetings, general outings and she has just absorbed every new experience, gained confidence and is thoroughly enjoying her job. Our last meeting was 6 hours long; we were up at 5.30am, left for London at 7am, arrived at the venue in London at 10.15, meeting ran from 10.30-16.30, then we walked in Regent’s Park in the dark before coming home, arriving at 19.45. It was a long old day, but Molly was absolutely amazing. She just takes everything in her stride. She loves coming with me, and we love having her there - and she brings cheer to everyone wherever we go. I love talking about what she can do, and seeing the magic on people’s faces as they see her help me. She’s an amazing dog, and I am so grateful to Dog A.I.D. as now she can assist me and be beside me throughout my life. An amazing charity, please consider supporting their stamp appeal - Dog A.I.D. Stamp Appeal.

It’s amazing what can change in six months. Also, I received the news that I definitely have a neuromuscular disorder, and next year the testing will start in earnest to see which one - or whether I have a Syndrome Without A Name, in which case, I won’t have a name but we might be able to find the underlying cause. I wrote a blog about it on the 10th November, which came across overwhelmingly positive (read it here) - however, it is not a positive thing. To know I definitely have a progressive, degenerative neuromuscular disorder which is only going to get worse is not a positive thing - it just came across positive because I was relieved and overjoyed that I was being listened to and my concerns that something else was going on were being listened to. Reality hit the next day, and it is terrifying. However, at least I know I have an NMD, and they are trying to find out which one - but the fear and upset is ever present and I know I have to do everything I can whilst I am still able to, because I am deteriorating rapidly and we know things are only going to go downhill; I’ve just got to make the most of the here and now. Do all I can, whilst I still can. Make the most of every day and do things now, not wait, because there will be a time I can’t do them. I am deteriorating rapidly and losing abilities, how weak I am getting is scary, and my poor body is frail and struggling, but I will keep persevering and living my life; I will just have to live it “in the fast lane”. 

I am so lucky to have all these amazing opportunities, to have Molly beside me, and to have a wonderful family and support network. There’s a lot for me to be thankful for, and I live each day with a grateful heart. So, it’s time to get back on with living. I have a great life, and I intend to make the most of today, every day I get. To appreciate the wonder of life, the beauty of nature, the fantastic opportunities I am honoured to be asked to take on and amazing people I have in my life. 

Sunday, 20 November 2016

Be Your Own Kind Of Beautiful

I am disabled. I am covered in tubes, bags and scars. I am perfectly imperfect, not what society defines as beautiful. I don’t feel beautiful. However, I am comfortable with myself and my body. I do not resent the way my body looks, nor am I ashamed. I am not disgusted or repulsed if I were to look in a mirror, nor do I feel the need to hide myself away. I am who I am. Love me or hate me, beautiful or ugly. I am just me. My tubes, bags and scars tell the story of my daily battle for life. Why should I be ashamed of that? They show I have survived, and continue to survive. So no, I am not beautiful by society’s standards, nor would I describe myself or see myself as beautiful; but I am who I am, and I refuse to feel ashamed of the body I have. I’m not bothered about people seeing my body, my tubes and bags and scars, I am not bothered that you can see my Hickman line coming out of my chest or if my stoma bags hang out from underneath my top. I don’t feel the need for society to consider me beautiful, nor do I need to consider myself beautiful, I just accept my body for what it is, celebrate my survival and refuse to hide or feel ashamed of what I have, and who I am. We’re all different, unique in different ways - it’s time we started accepting and celebrating diversity, in society, and especially in the mainstream media.

It’s hard to feel beautiful in today’s society when “beautiful” is shoved in your face all the time, thousands upon thousands of images we see every day in the media and in our lives generally and we are told and shown what beautiful is. If we don’t conform to that definition, style or ‘look’ of beauty, then we are not beautiful and thus we are made to feel insecure about our looks, our bodies, what we wear, what we do - every part of our lives get judged against what the media portrays as perfect. Disability is considered a burden, an inherently unattractive feature of a person, we are considered broken. And the media causes much damage by branding us benefit cheats and scroungers. We will only be beautiful if our disability can be fixed. Why should beauty only represent skinny framed or hourglass figures, nice skin, nice hair, tanned complexion, nice eyes - you have to win the genetic lottery to be considered beautiful in today’s day and age. And it’s no wonder why so many people turn to cosmetic surgery to change their features to society today’s definition of beauty. The problem is, our definition of beauty changes year on year, decade on decade. What was considered beautiful in the late 1990s and early 2000s is completely different to today’s definition of beauty. So how can we strive to be beautiful, when the definition of beauty constantly changes? Beauty is like the season’s trends of fashion, different looks are the “in thing” at different times and then they fizzle out and a new look becomes the new "in thing". It's so difficult and we are constantly told what's pretty and that if we don't look, dress, act, live like that then we're basically ugly people. The goal posts are continuously moving and we are constantly bombarded with images making us feel ugly and inadequate. You're either society's definition of beauty or you're ugly - no middle ground. We're under pressure all the time to look good; it's so difficult to have self confidence when we base our opinions of ourselves on photoshopped images, stick-thin women and the media’s bombardment of us about what’s pretty - and what isn't. You literally need to be a chameleon to be society's definition of beauty, to be able to change your body to continually morph from look to look, features to features, body to body depending on what the media and society dictates is beautiful at that given moment. It's scary. 

Disability is automatically a non-starter in the beauty department (except for devotees, but I'm not going anywhere near that subject). There is the perception that disabled people are - by default - ugly people. How many times I've heard disabled people say they've been told they're too pretty to be disabled or too pretty to be in a wheelchair. Where's the logic in that!? Disability and beauty aren't mutually exclusive, but are seen as so. Disability seems to automatically make you ugly, different, broken, flawed and to many in society, wholly undesirable. We're seen as asexual, helpless, inconvenient and unsuitable and people see us as burdens simply due to our label of disabled - even without finding out why we may be disabled. So many disabled people using online dating sites are too scared to reveal their disability in fear of putting people off. And heaven forbid we have a partner or get married, they're seen as being kind and doing a good deed and public service by being involved with a disabled person, looked on as a heroic act, and they can't possibly be truly in love and have a physical, intimate and sexual relationship. That just doesn't happen to disabled people! How do people think that makes us feel? Many disabled people's partners were people who saw the person, not the disability, and the disability may impact upon their relationship but it isn't a factor in the relationship. They can't possibly be truly in love and together, having intimacy and and a physical relationship, let alone have children (major taboo alert). Disabled people can't be pretty and gain romantic partners in the normal way, the partner simply feels sorry for them and is doing a great deed for the disabled person, and they get congratulated for being kind for being with the disabled person. Err, hello, we can have romantic relationships, meet people, have sex and some of us have families! We're still sexual beings, you know! Once again, we are ugly, broken, undesirable. We can't be beautiful, let alone sexy. Why? Because we are disabled. You can't be beautiful, attractive or sexy when you have a disability. End of. 

However there is a quiet revolution going on. Disabled people are redefining beauty, showing that disabled people can be beautiful and, (shock, horror) sexy. I don't know why this is such a hard thing for people to wrap their minds around. Disabled people aren't the same, we are as unique as every able bodied person. Our disability doesn't stop us being people, people who need to be loved, accepted, complimented and wanted like the next person. It doesn't stop us wanting intimacy, relationships, marriage, children and spending the rest of your life with that special someone. We still have wants, needs, feelings and desires, we're not an asexual subhuman species - we're just normal people! Slowly but surely, disability is feeding into the media - with much debate about "good" exposure and "bad" exposure, but exposure and inclusion nonetheless - though it is seriously lacking and disabled people severely underrepresented in the mainstream media. Also, with able bodied actors being hired to play disabled people, this just makes the situation worse. We need more positive disabled role models, disabled news and TV presenters, more disabled characters played by genuinely disabled actors - we need disabled people more visible and represented and included in the media, including as mainstream TV and film, and doing so by sending out positive messages, working towards full inclusion and communities who see that the disabled person isn't at fault, that society and our attitudes towards disability are what disable us. There are more and more disabled people, one at a time, breaking into modelling and the fashion world, more inclusive advertising but when it comes generally from high street to high end fashion and mainstream shows, disabled people are overlooked and barely represented, if at all. It needs to change, in order that the incorrect perception and judgement be corrected and the biased view of beauty and disability be removed. Diversity should be celebrated; but we shouldn't only use disability under the heading of diversity. It should be wholly mainstream, and nowhere used to meet a target or fill a quota. Disability is not ugly, our imperfections are perfect, our beauty is not defined by our disability. We are beautiful people - beautiful people who happen to have a disability.

I love the quote “Why fit in when you were born to stand out?”. I love the fact that I am different, I love the fact that we’re all different. I love getting to know people, hearing their stories, learning about them. I don’t judge people based on looks, yes sure we may make micro-judgements but I don’t base my perceptions of a person on their looks, I judge people on their personality, their humour, their goals and hobbies, their outlook on life and the lives they lead. We need to not see our disabilities as defining us as broken people, that disability cannot be beautiful or sexy. We are beautiful both in spite of and thanks to our disabilities. We need to not place so much emphasis in our looks or on others' opinions; beauty needs to come from within, people need to accept and feel beautiful in themselves, and to have self confidence to wear whatever you like, to feel beautiful, to feel sexy, and to accept yourself. 

We need a world full of people who smile, not because a camera is focusing on them, but because they are happy and want to share this happiness with others; smiles are infectious, and a smile is the most beautiful thing anyone can wear (and it's free!). 

So, be confident in yourself and your appearance. Accept yourself, not other people's perceptions of you. Feel confident that disability does not mean you cannot be beautiful or sexy, and wear your confidence with pride. I don't consider myself beautiful, but I'm comfortable in my own skin, I don't feel the need to change for others and I want people to know who I am as a person, not just judge me on my looks from a distance. Stop comparing yourself to society's bombardment of what beauty is; define your own beauty. Take pride in your natural appearance, and never feel ashamed or ugly. I'm covered in tubes, I am fed through a line directly into my heart, a tube drains my stomach, I have most people's worst nightmares, two stoma bags, meaning I poop and pee into two bags on my abdomen, I'm covered in scars, hooked up to intravenous drips almost 24 hours a day and I'm in a wheelchair and can't do anything independently bar speak and use my laptop, but I'm comfortable with who I am and refuse to hide myself away. I don't place my self worth in the hands of other people. I accept who I am, scars, bags, tubes and all; there's no way I am going to let someone tell me I am ugly. Much as I don't see myself as beautiful, I refuse to be defined as ugly. Have confidence in yourself and your appearance, and celebrate diversity. We're all different and unique in our own ways; let's celebrate our differences, not try and conform to the unattainable beauty that the media tells us is we should look like in order to be beautiful. 

Thursday, 10 November 2016

More Questions, More Tests But Hopeful For Answers - Health Update 10-11-16

Today I had a very successful hospital appointment at the National Hospital for Neurology and Neurosurgery with the neuromuscular team, seeing Dr Ros Quinlivan. The outcomes of the appointment could be crucial for myself and my family, and turn everything we think we know about my conditions on their head. It was a much-needed appointment, and I couldn’t have asked for more. We spent almost two hours in the appointment with Dr Quinlivan and she was extremely thorough, going right back to my birth and all through my life to understand every problem at every stage of my life. She was amazing. I know this isn’t a typical blog but I felt the easiest thing was to put it on here because I know my followers will find it interesting as it sheds a whole new light on my conditions. It could explain why I don’t fit the “EDS Hypermobility” box very well and why I have deteriorated so rapidly throughout my life, especially so over the last 9 years, and incredibly so in the last 5 years, and why I have so many complications that don’t all add up, too. It is a game-changer in terms of my conditions, not because it will be able to lead to a cure or change the management of my conditions much if at all, but because it could explain a lot of why’s as to how I got to this point, this complex, why I’m life-limited and why I am as severely affected as I am. So here is the outcome of today’s appointment and what it means for me. 

As I said, Dr Quinlivan went right back to the start and back to basics. We combed through my life up to this point and she thoroughly examined me. She even did some research whilst I was in the appointment and this led to her asking a few more questions and doing other investigations too. She was intrigued by the way my condition has progressed and to be honest totally understood why my consultants are at a loss as to what to do, because they don’t understand why things are the way they are. Like why I have progressed so much over my life, why my condition is degenerative when EDS isn’t, why I have so many unexplained and odd things going on, why so many bodily systems are affected and in the way they are affected, why my body is unable to maintain homeostasis (such as needing 5 litres IV fluid every day and yet I can still be dehydrated), why my TPN can’t be off longer than 3 hours, why some of my muscles are completely undeveloped and others are being eaten away, why sensation is going, why I am losing function despite doing more now than I ever have since becoming ill, why I am deteriorating and why we never seem to be able to get on top of my conditions - so many if’s, why’s and how’s that aren’t explained by my current diagnoses. 

Dr Quinlivan was truly wonderful. She gave me 2 hours of her time today and is dedicated to finding out why - if we can, because we might never find out exactly why, or I might have a SWAN (syndrome without a name), but at least she is dedicated to trying and to getting me all the tests and care I need to understand and manage my condition. First off she went through the bloods they took last time, and found my carnitine level is very low. This is a sign of a metabolic or mitochondrial disorder, and I may need supplementation to raise the levels as low levels of carnitine must be corrected. Partly linked to this is the fact that my skin complexion is darker than my families - which can be linked to deficiencies in carnitine. In the New Year I will be admitted to the Neuromuscular Complex Care Centre for a 3 day (2 night) stay to have a whole host of tests to try and find the cause of my problems. I will be having tests including hourly cortisol monitoring, 24 hour blood pressure monitoring, a sleep study, lung function tests, a single fibre EMG, an echocardiogram, bloods, catecholamine levels monitored and other things I have probably forgotten. Also whilst I am in, they will get the neurogastroenterologist Dr Emmanuel to pop in and see what he thinks - I already see Professor Aziz but they would like Dr Emmanuel’s thoughts - as well as seeing Dr Robin Lachmann whilst I am in there who is a world expert in dysautonomia and metabolic/neuromuscular disorders so his input will be very much welcomed. I will literally have every test they need to be done whilst inpatient, but once we have the results of the tests from my NMCCC admission, then they will decide whether to proceed with the muscle biopsy and skin biopsy - just in case they get a definitive diagnosis whilst I am admitted, they will wait for those results before proceeding with the biopsies. They are also going to refer me to the 100,000 Genomes Project (click here to read more) which is a project to sequence the genomes of people and two close relatives to try and find the cause of rare diseases, some cancers and undiagnosed disorders, trying to find the underlying basis by sequencing their whole genome - basically like looking for one spelling mistake in a library full of books. The results could take 5 or more years to come through, or nothing be found, but it’s important that cases like mine be referred to try and find out why as there might be other patients like me who have the same disorder/mutation and they would then know more about what to look for. So it could not only benefit me by giving me a definitive cause of my condition(s), but also help others.

My condition will be metabolic/mitochondrial, myasthenic or could be a rare form of dysautonomia (not POTS). They will cover all bases and check for disorders of all three, and will do everything they can to find out what and why. There were lots of things flagged up today, a lot of issues poured over, and it was very positive. I feel very happy that things are being looked into and we could potentially come away with a reason for why I am like I am. In fact, Dr Quinlivan wonders whether I even have Ehlers-Danlos Syndrome at all. Hypermobility and other symptoms of EDS can be very common in certain neuromuscular disorders, hence it is easy for the latter to be diagnosed as EDS when it isn’t. Or I could have EDS as well as a neuromuscular/metabolic/mitochondrial/myasthenic condition. We won’t really know, but Dr Quinlivan will do everything she can to find out what’s going on and why. All we know is that my condition is not explained by EDS, my complications don’t fit, I have a degenerative conditions which EDS isn’t, and I am life-limited, which also EDS is not (outside vascular EDS). It may explain why I have autonomic issues outside the definition of POTS (which tends to be labelled Autonomic Neuropathy on my notes alongside POTS), Chronic Intestinal Pseudo Obstruction (as well as dysphagia and silent reflux) which has lead to complete, irreversible intestinal failure, bladder failure, metabolic issues, restrictive lung disease, progressive muscle atrophy, eye muscles problems, some completely undeveloped muscles, deformities, Kyphoscoliosis, Osteoporosis, neurological problems and so on, why I was affected right from birth with signs of this neuromuscular issue and why I am like I am. 

Finding out about these conditions won’t change my treatment much, if at all. There is no cure. It will just give us a reason as to what’s going on and why - possibly, if we can find the cause - but there may be different ways of managing it, we won’t know until we find out what’s going on (if we do). I just feel so positive about finding out what’s going on, and I hope, through the 100,000 Genomes Project, it might help others, too. So it was a really positive appointment and you can understand what a game-changer it could be. I likely have EDS as well as a neuromuscular disorder, but so much of my problems and symptoms have been misdiagnosed. I don’t blame my doctors - as Dr Ros said, it can so easily be diagnosed as Ehlers-Danlos as it can mimic it to someone who isn’t looking for a neuromuscular disorder, and my doctors weren’t looking for an NMD because so much of my symptoms back then did point to EDS, if only we’d gone through my life like we did with Dr Ros in the same way, maybe it could’ve changed my diagnosis in the early days? I do feel like I have EDS, but so easily the hypermobility and signs of EDS could be symptoms of the neuromuscular disorder, rather than a EDS in its own right? I don’t know, and we won’t know unless a conclusive diagnosis is made, and we may never know for sure, but Dr Ros is doing all she can to find out, getting me seen by the experts in their fields and to have all the tests necessary to find out what’s going on and why. So I feel extremely positive after today, if a little overwhelmed as to what was said and all the possibilities and all the investigations I will need, but it’s a positive step and I am really excited at the possibility of finding out why I am like I am, if we can come to a definitive diagnosis, that is. 

However after what I’ve said, you may be thinking, if it’s not going to change your outcome, you’ll still be TPN dependent, wheelchair bound, seriously ill and life-limited, there will still be no cure and it won’t change your management much, what is the point in finding out what and why? Well, knowing why you have something is important, especially to someone like me who needs to know the reason behind everything. However, one big driving force behind finding out why, is so that we can work out whether my sister’s future children could end up like me. I am terrified that I could have a hereditary condition, and whilst no-one in my family has what I have, potentially with a recessively inherited condition, Vicky could carry it and potentially she could give birth to children with the condition, whatever it may be. This absolutely terrifies me. I do not want my sister’s children to suffer like I do, I do not want Vicky to go through everything mum has gone through with her own children, I do not want this condition to afflict anyone other than me. Sure, even if we know the mutation/condition and its mode of inheritance, there might be no prenatal tests to see if Vicky’s children were to have the condition; but at least they could have genetic counselling and know their risks. So whilst I want to know why and find out what condition I have, I also need to do this for Vicky and her future children. I don’t want any niece(s) or nephew(s) to end up like me. That would break my heart. I just need to know.  

So this is my update from today’s appointment and I know some of you may find this very interesting. I’m still processing it but feel very positive about the possibility of knowing what I have wrong and why. I think I still have EDS, but there’s definitely something more going on - and we’re on the right path to finding out why.

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