I find it so hard to write a summary post about a year as I’m not where I want to be and unfortunately getting there is completely out of my control due to my health issues. I should be in my third year at university and home for the Christmas break, I should be out and about catching up with people whilst I’m home yet I’m no closer to being back in Cambridge, my body has meant more of the past few weeks have been spent in bed than out of it and I’m sick to death of illness dictating my life.
However hard I find it, I’ve got to cling to the positives or I wouldn’t have a reason to get up in the mornings. Firstly, despite having to spend more time than I’d like at home, I’ve had the company of Jeffrey. As most of you know, Jeffrey is my hugely loved (very spoilt) Maltipoo who keeps me sane through the difficult days. Jeffrey also gave me a reason to leave the house when I had very little purpose, getting me out to puppy training (no matter how embarrassing he made it) where I was fortunate to make some really good friends. 2017 also saw me having to say goodbye to my much loved Fiat 500 but saw a good replacement with ‘Mervin’ my Mercedes A Class. I’d saved for my dream car, my Fiat, since I had a Saturday job at 16, but as my deteriorating health meant I have to rely increasingly more on a wheelchair, I had to look for something more practical. I use the term ‘more practical’ loosely as I know there were many more larger cars out there that would have suited my needs greater, but after losing so much to illness I needed something positive in my life.
I was also fortunate enough to have a visit from a teacher from Townley, my secondary school, this year as the senior leadership team had heard I was poorly. Mrs Pandya came around bearing flowers and cards, and with the kind offer that I could go and volunteer my time back at Townley to give me a purpose to leave the house when I felt like I had nothing left. This was most definitely one of the highlights of 2017 as, school had been part of my life for seven years, extending beyond academia as I was fortunate enough to be a deputy head girl for my final year. I was lucky whilst at school to have ultimately got where I’d dreamed of, to Cambridge, and since having to intermit felt a failure but the endearing words of both Mrs Pandya and Mr Deehan eliminated this worry and simply instilled their faith in me that I would get back there.
The other highlight of my year has been meeting Thea; those of you who follow me on social media will know that Thea also has EDS and it was seeing her on the news after being able to walk down the aisle on her wedding day due to state of the art knee braces that I got into contact with her and it’s like we’ve been friends for years.
Thea is the most beautiful person I know, on both the inside and out, and despite facing her own health problems, continues to give me strength throughout the most difficult times. Due to us both using wheelchairs the logistics of getting out together are not always straight forward, but somehow we make it work and I couldn’t imagine my life without you in it Thea.
I’m also so grateful for my parents and Laura for being there despite the difficulties, and for Jack not leaving my side. Things are far from easy, and I’d give anything to be able to do ‘normal’ things, but to be surrounded by people who love me none the less is extremely reassuring. I also went on a lovely break to Pevensey with Jack and his family for a week where we made such lovely memories and the break from ‘normality’ was so needed.
September saw Laura run the Great North Run for Crohns and Colitis UK and we had a lovely mini break in Newcastle to support her. I can’t express my pride for Laura and to see her do something such as she did for a charity so close to my heart was touching. My Mum and I also spent a weekend at the start of October in Warwick at the first EDS/HMSA conference. We learnt a fair bit about the multi-systemic manifestations of EDS that I live with on a daily basis and felt better informed about the condition and up and coming treatments.
With the overwhelming theme of illness in my life, it’s so easy to forget the good times and the people who have been there in the good and bad, and so I also need to say a huge thank you to Deborah. My 2017 was a much better place for you volunteering your one day off a week to get me out of the house and to an Aquafit class which I wouldn’t have had the confidence to do without you, and I’ve now made a lifelong friend in you. Also thank you to Sophie for putting up with me since secondary school and despite not seeing each other so often now, when we do see each other it feels like nothing has changed no matter how long it’s been.
I’m also extremely grateful for Sara for being there and being the greatest support I could ever wish for. Also to Kate for the puppy play dates, arty afternoons and for keeping me sane despite all has been going on with the hospitals. My Mum’s friends have also been amazing, visiting me in hospital but much more importantly than anything in supporting my Mum who’s been forced through this difficult path with me, and I’m eternally grateful to you all for keeping my Mum, my greatest support, sane.
November saw my 21st birthday where I was spoilt by so many people and made memories that I’ll treasure for a lifetime. My family took me to Harry Potter World, to The Delaunay for Brunch and we had a box to see Aladdin. They also organised a surprise afternoon tea where so many family and friends had come to celebrate with us. Thea treated me to Afternoon Tea at The Ritz as well as gorgeous presents; I was just so grateful to have got through my celebrations without any major health hiccups.
Of course this wouldn’t be my blog if my health problems weren’t mentioned, and whilst I’ve chosen to highlight the positive parts of the year, it hasn’t gone without health difficulties. I had two admissions; one in March where I was admitted to DVH for a week due to my bowel not working, and a second in May in Medway Hospital for Glandular Fever which caused my airway to collapse.
I’ve also had two port-a-cath revisions and finally, with my third port of the year, although temperamental, seem to finally have one that works sufficiently to get the necessary bloods from it. 2017 also saw the rise of a Potassium deficiency which dropped so low I was at risk of a cardiac arrest and had to go straight to A&E. I was also put on various lists for ileostomy surgery, for which I finally have the date of 30th Jan after which I’ll be admitted for 3/4 weeks to try and stabilise things.
Unfortunately, dealing with my ill health doesn’t get any easier, but as difficult as it is I have to draw the positives from it. The strength I’ve found as a result of it, the friendships I’ve made and the resilience I’ve built are skills I wouldn’t otherwise have. I appreciate the little things in life so much more, I’ve learnt to make the most of the good days and always look on the bright side; no matter how hard it can be to find at times there always is one.
I will get back to Cambridge for Michaelmas 2018, I’ll continue to take my health in my stride and face each day with an open mind; getting back to uni with the use of wheelchairs and need for carers is better than not getting back at all. I say it time and time again, but I truly am grateful for the support, messages, visits, shoulders to cry on and constant open ears for my rants;I wouldn’t cope without you all and I’m eternally grateful for you all in my life.
Thank you all for your support, and I wish you all a happy, healthy 2018.❤️