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.

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.