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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.

Monday, 31 October 2016

#ANurse4TheJs - Help Me Raise £40,000 To Fund A Nurse For The J's Hospice

The #ANurse4TheJs fundraising page is located here: 

Here is our campaign video:

The J’s Hospice have been supporting me since April 2011, and within the first fortnight my hospice nurse saved my life. Since then they have supported us in a variety of ways, with specialist nurse support for things like liaising between professionals, coordinating care, getting medication prescribed for better symptom control and support for arranging or increasing care packages and getting equipment; support from carers who used to come in twice a week to support mum in caring for me; as well as complementary therapy, counselling and volunteer drivers to get me to appointments. I would not be here without The J’s, let alone have achieved all I have achieved. All my charity work came about because when doing my care plan, my J’s nurse listened to me saying I was scared I’d die and my life wouldn’t have meant anything, that nothing would be different or better because of me and I’d simply be forgotten. Two years later she put me forward to speak in Parliament for Together for Short Lives; and I haven’t looked back since! None of my charity work would’ve happened without The J’s, let alone to be appointed MBE at the age of only 22. However I owe my life to The J’s; without my J’s nurse, I’d have died in May 2011. This is why I want to give back to The J’s Hospice and to help keep them running, as I myself know how vital these services are, and how desperately The J’s need support. Please consider supporting the campaign in any way you can; not only will you help keep The J’s Hospice running, and help them continue to support life-limited young adults and their families, but you will help me to fulfil an item on my bucket list, which is to raise money for charity. I want to make a difference, but I need your help to do so. 

I have set up a campaign called #ANurse4TheJs to raise £40,000 to fund a specialist nurse for one year for The J’s Hospice, a young adult hospice who provide a hospice-at-home service to 16-40 year olds with life-limiting conditions across Essex. We need to raise this £40,000 in 3 months as The J’s are struggling to sustain their services and if we do not raise this sum, and The J’s do not receive sustainable funding, they will have to cut back their services by at least 25%. This will leave young adults without vital support, support that cannot be met by other services. So please consider supporting the campaign, which runs from the 1st November 2016 to the 1st February 2017. Together we can make a difference. 

The J’s Hospice was founded by Denise Whiffin in memory of her son Jonathan who had to travel out of county for suitable support as he had outgrown children’s services and the children’s hospice that supported him, and there was no dedicated hospice for young adults in Essex. She set about changing this, and so The J’s Hospice was formed.

The J’s currently provide a hospice-at-home service, as they do not have the funding to build, run or staff a dedicated hospice building; they are struggling just to sustain the hospice-at-home service as it is. Currently, The J’s support 96 patients, with the specialist nurses caring for 25 patients each. Around 450 young adults could benefit from The J’s support, with 40 new referrals coming in each year. However, despite The J’s providing a vital service, only 30% of The J’s Hospice funding comes from Clinical Commissioning Groups, meaning they are dependent upon donations, fundraising and charitable grants. The success of this campaign is vital, and is where you and I come in. With your support we can raise £40,000 to fund a specialist nurse for one year, and by doing so we will be helping The J’s to continue to provide specialist nursing support to young adults with complex and life-limiting conditions. If I can bring people together to raise this total, we can all know that we have directly had a hand in supporting poorly young adults across Essex. You can make a real difference by supporting this campaign. I cannot raise this total without your help. 

So please consider making a donation, sharing the fundraising link on social media along with the hashtag #ANurse4TheJs and even fundraising for the campaign - please support us in any way you can. 

Here are some ideas of ways you can support #ANurse4TheJs:

  • Would you hold a cake sale or coffee morning, a dress down day at work or school, or organise an event, get together or organise a raffle or auction?
  • Would you be willing to take on a sponsored event? Would you do a marathon, triathlon, tough mudder, open water swim or even a skydive? Or give up alcohol for a month?
  • Will you participate in #Jumpers4Js? You don a Christmas jumper, take a photo of you in the Christmas jumper and share it on social media with the both hashtags - #Jumpers4Js and #ANurse4TheJs - and tag 5 friends who you think will join in too, and make your £3 (or more) donation via the fundraising page. We want this to go viral, so please share this far and wide. 
  • Could your website, blog, social media page, newspaper, magazine or TV or radio programme cover this story to help us raise awareness?
  • Do you know a celebrity who could endorse the campaign and share it on their social media? Or who could become involved in the campaign in some way? We greatly need people to endorse and support the campaign, so if you or someone you know can, please do put them in contact with me or ask them to join in with #Jumpers4Js. 
  • Would your company be willing to make a donation to the campaign? Or to support The J’s Hospice long term?

What I can offer in return:

In return for your support, I am willing to come to your school, college, organisation or workplace and deliver a speech on my life, my support from The J’s and my charity work. Having given many speeches now, so long as I could get to the location I would happily do this in return for a donation to or fundraising for the campaign. I recently delivered a keynote speech at an advocacy conference, and have given 13 speeches over the last three years, at a variety of events and meetings. I can offer you a speech that will be inspirational, motivational and that is targeted towards your needs or wishes and your desired outcomes. You can view my recent speeches on youtube - Advocacy Conference Speech (click here) and Trefoil Guild Speech (click here). 

I do hope you will support the campaign, to help us reach the £40,000 target, and to help keep The J’s Hospice running. 96 patients currently depend on the service, but without us reaching the target, the J’s will have to start cutting back the services by as much as 25% or more. This will leave young adults like myself and our families without the support we need. Vital support which cannot be provided by other services. YOU have the power to keep these services running, and YOU will be directly supporting young adults with life-limiting conditions and their families by supporting this campaign.  

Together we can raise the total. 
Together we can make a difference. 
Together we can keep The J’s Hospice running. 

Thank you.

Lucy Watts MBE

To contact me regarding the campaign please use my email:

To learn more about The J's Hospice, go to their website here

Sunday, 16 October 2016

Be Your Client's Hero - National Advocacy Conference 2016

On Thursday 13th October I attended the Be A Force For Change - National Advocacy Conference 2016 run by Kate Mercer Training. I delivered the first keynote speech on my experiences with advocacy, titled “Be Your Client’s Hero”. It was a brilliant event, very successful and we had a lovely day there. The speeches and workshops were very interesting and it was lovely to meet so many inspiring people there today. 

Being the first keynote speaker was exciting, and I feel it is the best speech I have given. I really enjoyed it - usually I'm so nervous and anxious to get it right, that I forget to enjoy doing it - and those with me, said it showed on my face and in the way I spoke. I had a fantastic time, I delivered my speech clearly, I got across the points that I wanted to, and I managed to round it up at the end and clearly deliver my message that I wanted people to take away from my speech. Sadly the slides for my presentation wouldn't work, but it didn't detract from my speech at all. I also answered a few questions afterwards. My speech flowed nicely into Steve Broach’s presentation on Human Rights which followed, with a lot of issues faced by myself and which were touched on in my story exemplifying the different acts and laws and how they can be used to meet the needs of the disabled person. It was a fascinating talk and I left with a much greater understanding of the laws, from the Human Rights Act, to the European Convention on Human Rights, to the UN Convention on the Rights of Person's with Disabilities and the Equality Act. I also better under stood key articles within these laws and how they are used to benefit the disabled person.

Here is the video of my speech:

Following my speech, I attended a workshop run by NYAS (the National Youth Advocacy Service) where we talked about social media and then the work of NYAS, advocacy and watched two of their new films. It was very interesting. 

I met so many lovely people at the conference, learnt a lot from the talks, Q&As, workshops and from other people, and I received lots of fantastic feedback about my speech (and also some tweets about it). 

We just had a great day, I do feel it was my best speech and I had a great time. I am so grateful to Kate Mercer for inviting me and asking me to speak, I am so grateful to everyone who has given me an opportunity over the last three and a half years. I was filming all day Tuesday for an NCPC video too, so it's been a busy week! 

Saturday, 8 October 2016

World Hospice & Palliative Care Day 2016 - Living & Dying in Pain: It Doesn't Have To Happen

Today is World Hospice and Palliative Care Day, celebrating supportive/palliative and hospice care around the world. This year's theme is Living And Dying In Pain: It Doesn't Have To Happen. 

Palliative care has been a part of my life since April 2011 when The J's Hospice came on board and my hospice nurse soon had me admitted to hospital and started on Total Parenteral Nutrition, TPN, which saved my life; if I hadn't started TPN when I did, I'd have died within a week. Bev and the hospice saved my life, one I so nearly lost to type 3 intestinal failure caused by Chronic Intestinal Pseudo Obstruction. 

Since then, palliative and hospice care has enriched and enhanced my life. It's brought symptom control, better condition management, a change in care perspective and as a result, improved quality of life. I went from being completely bed bound with no quality, to now getting out with Molly, my assistance dog, every day, going to charity events, giving speeches, achieving and spending quality time with family and friends, including going out for dinner with my family for the first time in nine years. It's all these precious things I owe to palliative care. 

I have been supported by two young adult hospices: The J's Hospice, a hospice at home service in my home county of Essex, and Jacksplace in Winchester, where I had two inpatient respite stays a few years ago; stays which were wonderful and, though I no longer have funding to go since I have a home ITU nurse package, I wouldn't hesitate if I needed to stay there in the future. The J's continue to support me, and I have a palliative care consultant locally as well. 

I live with severe pain, it is something that is a permanent fixture in my life. I'm on high doses of opioid medication (Fentanyl) to control my pain. I also rely on medication to prevent vomiting and alleviate nausea, and have 5 litres of intravenous fluid every day - 4 litres in my TPN feeds, and an extra litre of hartmann's solution - to manage my fluid requirements so that I am not left dehydrated. All of these are administered at home by my ITU nurses who care for me every day from 7am until 11pm, and a carer takes over from 11pm to 7am when the next nurse starts. I have the support of a dedicated young adult hospice, I have all the equipment I need, technology, support and expertise and much as my conditions cause great suffering, I am not left suffering without support or the right medication; my pain is never completely gone, but it is managed to the best of our ability. I have no gastrointestinal absorption, therefore my drugs must be buccal, patch or intravenous, or at a push, subcutaneous or intramuscular but I often get infections and sores from injections. I live in a country where I have access to adequate pain relief and other medications in forms I can absorb the drugs; if oral morphine was all I could have, I'd never get any pain relief. 

I'm very fortunate; I live in a country where pain relief is readily available, in different formulations, routes of administration and is readily available to people of all ages. I live in a country where we have access to a whole range of symptom management drugs. We have dedicated hospices and specialist palliative care consultants and nursing teams, they may not be perfect but we have these services for children, young people, adults and the elderly. We are very fortunate. Many countries have no dedicated hospices, and in many countries pain relief like morphine is not available in paediatric formulations, leaving children suffering unnecessarily, or in forms other than oral for those who may not be able to take medication orally. I wouldn't survive if I lived in a developing country, they don't have the specialist care, treatments, TPN (let alone home TPN) or vital drugs in forms I can absorb. Millions of people around the world are suffering needlessly, with no access to pain relief, palliative care or hospices or support for family members to share the care burden. 

Palliative care is not just about end of life care, it’s about living, too. Living well, symptom control and quality of life as well as end of life care and support to have a good death. In today’s day and age everyone, regardless of age, race, location, religion or language should have access to vital pain relief and symptom relieving medications, to specialist palliative care, and hospices for both children and adults. However there just isn’t the funding, and even hospices in the UK are struggling. This means millions of people -  including children - are suffering needlessly and dying in pain. Living and dying in pain doesn’t have to happen, and that’s the message we want everyone to take away from this year’s World Hospice and Palliative Care Day. 

Here is my video for this year's World Hospice & Palliative Care Day:

Sunday, 2 October 2016

The Gift Of Life

Most of you reading this will know my story, my struggles and my successes. I'm not here to recount them to you. However, it's my 23rd birthday today. Big deal, right? I'm only 23. The thing is, it is a big deal, to us, anyway. 23, when you were given a rubbish prognosis, is a huge thing. It should be celebrated; but I don't just mean celebrate my birthday, I mean celebrate that medical science and the NHS can keep complex and very poorly patients like me alive. THAT is something to be celebrated. Me, well I am not big into birthdays, I measure my life in moments, not years, but I just feel so thankful to be seeing my 23rd birthday. To have achieved another year of life. To have survived, but not just survived, but to have lived, in every sense of the word. I have been through horrific things in my 23 years, things no one should go through, but I have survived and I have stayed focused, positive and not let go of living a life with a purpose. In my mind, I need to look back on my life and know it counted, that something or even a lot of things are better because of me, my life and my legacy and I can be proud of what my life has achieved. Also, to know I won't simply be forgotten, that is also very important to me. I'm not looking to be famous nor do I do anything for recognition, but for the impact of my life to live on in those my life has touched, that's important to me. I want my life, and the suffering within it, to have meant something.

When I was little, I just wanted to be normal, to blend in and be like everyone else so as to not draw attention - I was painfully shy, which might surprise some of you. I always knew I was different, but I didn't have the words to express my suffering, suffering I have lived with from day one, and suffering I did not realise was not normal for my first decade of life. I grew up wanting to be someone, anyone, else. I was not comfortable in myself, and the pain I suffered and the problems I had were something I hated, but stayed silent. I grew up wanting to be a doctor, to help people and make a difference. I wanted to fit in, but I always wanted a purpose in life. I needed my life to mean something. This has never left me. 

Now, I am not an extrovert, but I am comfortable in my own skin. Well, let's rephrase that, I'm not comfortable in my own skin as I'm in pain all the time, but I am comfortable with who I am. I am not ashamed, I do not wish I was someone else, and I don't just want to blend in and be "normal". I want to be extraordinary. To reach out and help. To spread my wings, and to help others do the same. I live a life of purpose, and I am proud of my achievements. I get comments of being an inspiration, and that makes me proud. Why? Because people are appreciating my genuine achievements. I'm not amazing just because I get up every day (though it can feel like an amazing feat some days!), people value all I have achieved, what I do, and the impact I make. This Dr Seuss quote pretty much sums up how I feel - 
"Why fit in when you were born to stand out?" 
Why do we strive to be normal? Why do we always want what someone else has? Why do we try to be like everyone else? I grew up wanting that, but now I enjoy standing out. I have the opportunity, the voice, and the tools to make a difference and impact people and help them. What more could you want than to help others and make things better for them? I go through so much on a daily basis, I suffer greatly, and I struggle and fight for my life every day, but I am content with my life. It's enough for me. I have a limited quality of life, but I make the most of what I have. I don't focus on others and want what they have, I focus on my own and how I can improve it, maximise it and grow as a person. Yes my life is tough, but I am not hard done by, the world owes me nothing, and I am contented. I am happy. And I am fortunate to feel this way. 

I have wonderful friends and family, a large support network, the most amazing consultants and wider medical team and a care package - which unfortunately only came about due to mum's brain tumour and post-op stroke - that allows me to live at home with my family. I am palliative - I have incurable, life-limiting and life-threatening complications of severe and complex conditions - but I still seek active treatment, and we have finally struck the right balance. I have a fantastic GP who prescribes IV antibiotics and other drugs to allow me to stay at home with my ITU nurses caring for me, preventing unnecessary, unwanted and risky hospital admissions. I have consultants who see me as a person first, who excitedly ask about my charity work and who work in tandem with me, listening, appreciating my input and involving me in every decision, outcome and solution. As well as nurses who have become friends. I have a fantastic team around me, medically, familial and friend-wise.

I wake up every day grateful I am still here, but birthdays are a reminder of how far I have come, what I have achieved and that I have lived another year on this beautiful planet. I thank life that I am still here, living, breathing, seeing, hearing and feeling. I may live on a knife-edge, but when you stop and look around, I have a pretty amazing life. I have an awful lot to be thankful for, and I just hope my life will always have a purpose, and that I will live on in the mind and hearts of those whose lives I have touched. 

I'm 23 today, and that's pretty darn amazing. Take the time to appreciate what you have, stop comparing yourselves to others and remember our struggles lead us to our greatest successes. You all have a purpose in life, you just need to find and fulfil it. Never take anything for granted and make sure your loved ones know they're loved, appreciated and cared about. None of us know how long we have left to live; I just have a reason to live for every day and appreciate how short life is. 

Thursday, 11 August 2016

Home Artificial Nutrition Week 2016

Most people have heard of feeding tubes, seeing kids with cancer and other illnesses with a NasoGastric Tube taped to their face. People know it’s possible to be fed through a tube in your nose down into your stomach. However, how many people know you can be fed into the small bowel? Even more so, how many people know you can be fed directly into the bloodstream? Not many. I certainly didn’t know you could be fed into the bloodstream until TPN was urgent and I would die imminently if I wasn’t started on it. It’s Home Artificial Nutrition Week, and so in this post I want to raise awareness of the different types of feeding, to show that a feeding tube is not the end of the world and that we can live full lives in spite of them, but also to raise awareness of the issues surrounding tube feeding. 

I was first put on tube feeds via a NasoGastric Tube in August 2009 at the age of 15. I was unable to swallow, digest or absorb food and so they started me on NG feeds after losing 6 stones in 6 months and only being able to eat one small handful of pieces of carrot cooked to the point of them being devoid of all nutrition each day. I was assured by a paediatrician this was a normal diet for a 15 year old, and his reluctance to accept that this was not a psychological issue delayed support; I only received my NG because I passed a psychiatric evaluation. However, only a week on NG feeds I was discharged home, on a bank holiday weekend, mum having only been shown once how to set up my feed and care for my NG and we were sent home with a pump but no stand or drip pole or rucksack to put it in, leading to us improvising with an umbrella stand, the handle of a broom and a coat hanger on the curtain pole, and no support or rapid access back to the ward in case of difficulty. We were thrown in at the deep end with no support.

Three months later, on the advice of a rheumatologist who photocopied text about Ehlers-Danlos Syndrome causing gut problems out of a medical textbook and put them in my notes, a PEG was placed on the 21st October 2009. I struggled on with PEG feeds from 2009-January 2011, continuously losing weight in that time where I couldn’t tolerate, digest or absorb my feeds, despite going through almost the full range of feeds, different calorie per ml ratios along with copious amounts of polycal and awful shots of calogen which my gut was not happy about at all. We kept pushing and pushing my gut to work, but it only got worse. I was admitted to hospital weighing eight and a half stone in January 2011, and put on PEG/J feeds, feeding directly into the small bowel via a tube that was passed through the PEG into my stomach and threaded down into the small bowel using an endoscope. However, I did not tolerate this method of feeding either. I continued to lose weight, until I dropped to the weight of 7 stone, which is dangerous for someone of 6’1. I had lost 11.5 stones in two years. Not only was I dangerously underweight, I had a heart attack-like episode caused by my body beginning to digest my heart muscle, I had no muscle or fat on my body, my bone marrow was starting to fail, I had blood transfusions and iron infusions and was extremely poorly. It took my hospice nurse, who came on board two weeks earlier, begging my London specialists to admit me before I finally received the nutrition I needed. 

I was placed on TPN on Friday 13th May 2011, and my consultants didn’t know if I’d survive, if my body would tolerate the nutrition and pulled my mum aside to tell her this. Fortunately for us, with careful management and replacement vitamins for imbalances caused by the refeeding process, I tolerated the feed and it keeps me alive to this day. I was in hospital for five weeks whilst they got my TPN prescription right - each patient has a tailor-made feed prescription made to their exact requirements based on blood tests, and their feed is made up to this prescription so they get exactly what they need. I also had to wait for the local CCG to agree funding, which took a while, as well as to organise with the homecare company for the delivery of the medical fridge, supplies and equipment necessary for me to come home on TPN, as well as nurses to come in and train mum on setting up and disconnecting my TPN feeds. Five weeks on a ward with no TV, no phone signal, no internet, and on a ward with 5 dementia patients; it was a long an arduous admission. I’d also only recently transitioned into adult services, and mum was not able to stay with me like she did in paediatrics so I was making life or death decisions on my own for the very first time. It was a difficult time. 

TPN is a mixture of sterile nutrients in fluid, made up of glucose, amino acids, electrolytes, vitamins, minerals and trace elements, and on some days lipids (fats), which is slowly pumped into the bloodstream through a central line which gives access directly into the bloodstream and sits just inside the heart, or in a large (central) vein leading to the heart. These central lines come in different forms, including: 
  • A Hickman Line, which exits the body on the chest, enters the bloodstream in a vein in the neck and is threaded down into the heart (there are other brands similar to the Hickman); 
  • A PICC line, which exits the body on the arm and is threaded through a large vein into the heart. PICCs tends to be used shorter term than a Hickman as the PICC lines don’t last as long;
  • A Port-a-Cath, which sits in a large vein, somewhere on the torso, and has a reservoir that sits under the skin. This reservoir is accessed with a needle, so an infusion can be run into the bloodstream, but has the benefit that when not connected to an infusion, you can de-access the reservoir (remove the needle) and have no external line to worry about. Active people seem to favour this option as they can be fit and active, go swimming, do sports etc. with no external line or attachment to consider. 
My first Hickman Line, single lumen
I have a permanent Hickman line in my chest through which my TPN is pumped in over 21 hours every day. Some people only need their TPN over 10-12 hours, and some only need it 3-5 times a week as they can tolerate days off their feed. Unfortunately I cannot cope with longer than 3 hours off my TPN as my blood sugar drops and my body doesn’t hold onto fluid so I become dehydrated very quickly. I don’t mind being hooked up most of the time, as I stick the TPN in its special rucksack, pop it on the back of my wheelchair and go out and walk Molly or go to charity events, to meetings, give speeches, and go out generally to run errands, meet friends or family and anything else I want or need to do. I also, every day, have an extra bag of fluid, called Hartmann’s Solution, to top-up the TPN to meet my fluid requirements. My TPN contains 4 litres of fluid, pumped in over 21 hours, and I have 1 litre of Hartmann’s every day which I fit around what I am doing. The optimum time for me to have the Hartmann’s is 1pm-6pm alongside my TPN, or 6pm-9pm during the break off my TPN, but in the interests of not having two pumps running and having to secure the second pump to the drip stand on my wheelchair, I sometimes trial running it overnight alongside my TPN, but find it makes me very dry and dehydrated in the evening as I don’t hold onto that fluid. In my five years and three months on TPN I have had 6 Hickman lines, as well as 2 PICC lines when I have had line infections and need central access to last me whilst I was without my Hickman line. I have what is called a double lumen Hickman, meaning the Hickman has two separate tubes joined together so I can have two separate infusions running at the same time and they don’t mix until they reach my bloodstream, as many medications and antibiotics are not compatible with TPN so cannot be put down the same line as TPN. I have one dedicated lumen for my TPN, and my other lumen is used for regular IV medication, my IV fluid (Hartmann’s) and IV antibiotics. 

TPN is what keeps people alive when their gut has failed or they have short bowel syndrome due to a variety of conditions that have necessitated the removal of much of the small bowel (where nutrients are absorbed) and often also the large bowel (where fluid is absorbed). In my case, I have type 3 irreversible intestinal failure due to a combination of Ehlers-Danlos Syndrome, Chronic Intestinal Pseudo Obstruction and Autonomic Neuropathy. They also affect my bladder which has failed too. TPN comes with many, potentially life-threatening risks such as infections in the lines the TPN is delivered through, which then spread into the bloodstream and can cause sepsis (often called septicaemia, which is the whole body reaction to a severe systemic infection). Other complications include blood clots, liver failure (the fats in TPN can cause liver damage) as well as bone and metabolic issues. TPN is by no means a cure, but it keeps people alive and frequently gives patients a better quality of life. TPN must be set up and disconnected, the the central line accessed and things administered under strict aseptic (sterile) conditions to prevent the line becoming contaminated with bacteria, potentially causing line infections which can become bloodstream infections and can be life-threatening. This requires a special technique, known as aseptic technique (though there is another technique called aseptic non-touch technique) which, when done properly, prevent the contamination of the line with bacteria. Frequently the parents of children on TPN are trained to administer these feeds, and adults, if they are capable, are trained to do it themselves or have a parent, partner or family member trained, or can have nurses come in to set up and disconnect their TPN feed. TPN is a big commitment to take on, you have to have a medical fridge for the feed which must be kept at between 2˚ and 8˚ until a few hours before connection as they only last 24 hours outside of the fridge. TPN is light-sensitive so is frequently covered up with a bag which blocks out the light. The light de-stabilises the solution. TPN means you have an awful lot of supplies, which take up a vast amount of room. You need to also make sure no air gets into the line as it can cause a fatal air embolism, so as well as preventing contamination with bacteria, you also need to make sure no air gets into the patient. 

However TPN doesn’t stop people living full and active lives. It’s not the end of the world, in fact it can be the start of a new life for many people, finally getting the vital nutrition they need. TPN allows me to get out of bed as I have all the fluid my body needs to maintain my blood pressure to allow me to sit up, and gives me the nutrition and energy I need. Yes I get tired and it’s a lot of work to be on TPN but it’s so worth it. I am cared for at home by a team of ITU nurses 7am-11pm and HCAs 10pm-7am. Prior to May 2015 mum did all my TPN and medical care single-handedly, since carers cannot be trained to do TPN, so even though I had carers mum didn’t get a break. Sadly in April 2015 mum was diagnosed with a benign, but big and badly situated brain tumour, and so she needed urgent surgery. A battle ensued for a package and we finally won and I received what I have now, and luckily I did, as mum suffered a stroke and a bleed on the brain after the surgery and now has seizures. So my nurses do all my medical care and TPN as I am unable to. TPN has not only allowed me to survive, it’s allowed me to thrive. I do a lot of charity, health and disability work now and have achieved a lot, including receiving my MBE in the New Years Honours 2016 at the age of 22 for my services to young people with disabilities. It’s a huge honour to be recognised for my work and I am still shocked that I am actually Lucy Watts MBE. If it weren;t for TPN, I never would have lived to do all the work I’ve done, made the difference I’ve made and achieved the things I have achieved. I owe my life to TPN, but I also owe my quality of life to TPN. 

TPN is not a life-sentence or something to be feared. It should only be a last resort but it can completely change lives for the better. Yes it comes with complications but we wouldn’t survive without it, so we must take the rough with the smooth. TPN is amazing and we owe our survival to the doctor, Dr Stanley Dudrick, for inventing TPN and to the dogs, including stinky, on whom he raised on TPN to prove that it could be done in the face of a medical profession full of doubters. He has saved thousands if not millions of lives. So thank you Dr Dudrick for never giving up despite the doubters. 

TPN has taken me from this:

To This:

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