Spreading Awareness & Helping Others with EDS & POTS
Firstly, I hope everyone had a great Christmas and Santa got them everything they asked for…and if he didn’t you managed to pick it up in the sales! I had a lovely Christmas at my Nan & Granddad’s playing games, opening gifts and eating way too much. It’s crazy trying to fit everything in over christmas: we spent christmas eve night with my Boyfriend’s Dad, Stepmum, Niece and Nephew and popped in the Christmas Day morning too; on Boxing day we had christmas brunch with my Dad and Stepmum before I had work at 12; after finishing at 6 I came home to another Christmas dinner with my Stepdad’s family; then it was back to my Nan and Granddad’s for Nanna’s Birthday on the 27th and then I was back at work yesterday! Phew! I got through it…just about. I’m not sure why but boxing day morning I woke up with my knees burning with pain and barely able to walk, but with regular paracetamol, Biofreeze and my walking stick I made it to my various commitments. It was very lucky I was on Box office at work, else I wouldn’t have managed. It’s the first time I’ve had to take my stick to work. I’ve also picked up a silly little cold too which isn’t bothering me too much thank goodness and I’d much rather have it now than just before my next procedure which I’d then have to push back. I’m currently typing with blisters on my thumbs because I braved the sales alone in my wheelchair today because I’d told myself yesterday I was going to go. So despite my wobbly legs this morning I set off. I picked up some little bits with vouchers I got for my birthday and christmas getting some makeup in boots and an amazing Zebra stamp set in Paperchase (which, unless you have EDS, you won’t fully appreciate it’s awesomeness) and I may or may not have treated myself to some Stich socks and a Cockapoo calendar 😛
Right then, what to say about 2016?! Well it’s been pretty rubbish for everyone right? I mean just look at the last two days! (Rest In Peace Carrie Fisher & Debbie Reynolds) But from the early days of heaven claiming Bowie, Rickman and Wogan, we should’ve taken it as a warning sign that this year wasn’t going to be a good one. The passing of so many other wonderful, talented people, followed by the rise of Trump, the shambles we like to call Brexit and, the most heart wrenching of all, The last series of the Great British Bake Off as we know it means 2016 will definitely go down in history as one of the crappiest years ever! Please can nothing more go wrong in the next 2 days, I don’t think I can take it!
For me, although 2016 has been the source of many answers and finding new things I enjoy, it has also been a year of so much pain , sadness and loneliness and really a time to mourn my former life which I will never totally regain. I’ve had to work extremely hard to fight for the answers I’ve got about my health. This year I’ve had nearly 40 specialist appointments under 9 different people and it’s been difficult for myself and my family to go through diagnosis and finding out about my conditions to working on different treatments and day-to-day management. Despite all this I’ve had a great deal to be thankful for . I’m so thankful for my family and friends who have helped me, especially my mum and boyfriend who have lived with and put up with me. I am also grateful for all the little people who’ve come into the world this year; my precious little cousin Samara, who I am longing to meet; My boyfriend’s Nephew Logan, who’s always got a cheeky smile on his face; and our bestfriends’ little man, Max. I got to see my only female cousin (well she was until Samara was born), Wendy, get married to Joe this year and being a beautiful bride. I’ve also had the joy of befriending a lovely little puppy, who’s not quite so little anymore, Molly, who I don’t know what I’d do without. She gives me lots of love, cheers me up, gives me a reason to get out of bed in the morning and makes sure I’m keeping active. Obviously I’ve not done a great deal in terms of adventure this year, my journey of discovery has been my health, but I did go on a wonderful cruise with my grandparents, their first proper holiday in a long time, which was a great trip and so nice to spend some quality time with them, my mum and brother. However, I did help my boyfriend with a big adventure: buying and moving into his new flat. We spent a full 3 days painting and many more hours cleaning and putting together flat packed furniture.
So looking ahead to 2017 is very uncertain for many. How long will it take Trump to start World War Three? Will Article 50 actually get triggered? Who on earth is going to host Bake Off on Channel 4?! Although there are a lot of things I’m uncertain about in 2017 as I gear up for my first Blood Patch Procedure in the new year there are some things I’m going to make certain about next year. I will go back to UEA in September, whatever happens. Unfortunately, at this point, I’m not sure how easy that will be or whether I’ll be up to it but I may as well go back and give it my best shot. I’m also going on holiday with my Boyfriend something we won’t have done in 3 years, I don’t know where and I don’t know quite when, but it’s happening, after he and my mum gave me money to put towards it for my Birthday, my Christmas money is being put by too. It’s something I’m really looking forward to. My final goal for 2017 is to have my health as under control as possible, I know getting my health sorted was my aim last year but obviously I have much further to go than I’d originally expected. Although I can’t fix my conditions, by this time next year I would like my CSF leak fixed and hopefully be rid of my daily headache, got my generalised pain managed and sorted out my other issues with my tummy troubles and random rashes. I aim to continue this blog and hopefully help, inspire and educate people with and about chronic, invisible illness.
Finally, a massive thank you to everyone who’s read this blog and followed my journey since I started it and I would like to wish everyone a very happy new year and hope 2017 is filled with love, hope and happiness. Surely, after the year we’ve had, the only way is up…Right?
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