Sunday, 24 December 2017

Day 24 - choir

I like singing. It'd been a long time since I'd sung regularly in a choir when I joined my local church choir a few months ago, and I'd forgotten how much I liked it. Specifically, I'm a nerd and I like singing church music in Anglican services. Being in a church/chapel/cathedral choir (I speak from experience of all of them) is way better than being in any other kind of choir. We sing new music every week, so you don't get bored of stuff and there's always a new challenge. We sing for a purpose that isn't making money. We get fancy clothes to wear. We get on with the job. Best of all, we get to sing from the music and rarely, if ever, from memory - and at Christmas time, we have the absolute bestest music!
Dream of Gerontius at Salisbury Cathedral, as part of Clare Choir (Cambridge), with the London Philharmonic Orchestra and Chorus, 2011

Saturday, 23 December 2017

Day 23 - rowers

Earlier this month, I took part in the Fairbairn Cup Races, which is an annual event organised by Jesus College, Cambridge. As a college rower/cox I'd raced Fairbairn's a few times, but one of the nicest things about it is that alumni crews are invited to come back and race too. This year, I opted to cox the boat that was full of the older, more distinguished rowers! Well, mostly because the younger crew with John in was racing in a division that clashed with gymnastics, and I wouldn't have been able to get to the river in time for them...

Friday, 22 December 2017

Day 22 - The RDA!

Well, the easiest way to let you know what the RDA has done for me would be to direct you to this page.

But, just to give a bit more detail, I want to talk about the people in my own RDA group and how they have helped me.

Day 21 - my mum!

My mummy is the greatest. She cares for me, drives me to training/competitions/hospitals, she makes me laugh, she makes hot water bottles, she brings me medication, she cooks my food, she fetches things for me when I can't move, she puts up with me and, most of all, she supports me in everything I do. Without her I wouldn't be doing any of all the other stuff that is on this blog. Without her I would have died long ago. Without her I wouldn't have the means to do anything. She is simply wonderful and I love her completely.
Riding the fairground horses in France!

Wednesday, 20 December 2017

Day 20 - school (the grown-ups!)

I've already written about how great the children are that I work with, and today I want to say thanks to the adults. Trying to do the best for children who all have different needs - but whose needs are perceived as broadly the same by any government - is challenging! All the staff, however, try their hardest for the children and genuinely have their best interests at heart. They're also good to work with - I know I can always get advice (and do so on a daily basis!) and they're good fun. I feel so lucky to be able to enjoy going into work and a big part of that is knowing that I am supported by the rest of the staff, just as I try to support them.
As with the children, I don't want to share a picture of them directly because it would be unprofessional. I chose the one above because this week we all got an exciting Christmas present of the school's first ever colour photocopier! 😄

Day 19 - Isabelle

I was so busy feeling grumpy and sorry for myself yesterday that I didn't get round to feeling grateful for people - well, not online here anyway. My person for Day 19 is Isabelle, daughter of the inimitable Julie. Isabelle is a super volunteer for the RDA and also an excellent vaulter. This year she competed internationally for the first time and I was super proud! Isabelle is only a youngster really - she's in her final year at school - but she has maturity, compassion and generosity well beyond her years. She's witty and hardworking and, like her mum, is always a calming presence as well as being good fun!

Monday, 18 December 2017

Day 18 - family

Today I'm grateful for my lovely brothers and their lovely wives and lovely children (and livestock...). My oldest brother, Tom, is married to Katie and they have two little girls - Ælfreda (who celebrated her second birthday yesterday) and Astrid, who is just two weeks old today! They have a mad working cocker spaniel called Maple, aka 'Yellow Dog' (Rosie is 'Brown Dog').
Maple and Rosie
My other brother, Edward, comes between me and Tom in age. In June this year he married Hannah - they had a lovely wedding in White Notley, where we grew up. It was one of the happiest days I've ever had! Hannah and Edward have two bunnies (Wiffles and Lola) and their plan is to get a puppy in the spring/summer - yay! - followed by children at some point... 😊

Sunday, 17 December 2017

Day 17 - Emily

Today I am grateful to my wonderful friend Emily. Emily rides at my RDA group and is a very good rider and vaulter. She also comes to disability gymnastics class with me and always helps me have a great time!
Guess which one is me!
Emily has autism and is amazing at describing how it affects her. She is an expert on her condition and reaches out to people online and in person to share good news and good ideas. She's always so positive and has the best attitude even when she's finding things difficult.

Day 16 - John

This is John, my (very) long-suffering boyfriend. So far he hasn't despaired of me entirely despite my supreme talent for doing foolish things. He manages to strike the right balance of simultaneously looking after me and taking the mickey and is only occasionally exceptionally annoying.

Saturday, 16 December 2017

Day 15 - puzzles!

Today I am grateful for puzzles! I love doing puzzles as a distraction from pain or feeling sick, or just to pass the time while I'm resting (I know, I know, it isn't proper rest if your brain is doing anything, but you know what I mean). It's something I've done to distract from illness since going into hospital when I was 17 (and I couldn't let my mind rest, so I had to do something). Mostly I just like cheap puzzle books with a good range of puzzles, but they aren't very interesting as photos, so here's something a little different: a classic riddle presented by a classic puzzle-meister...
...and here's a version made more appropriate for me!

Friday, 15 December 2017

Day 14 - medics

On Day 14 I'm grateful for our doctors, nurses, physios, occupational therapists and all other medical professionals.
It isn't easy having EDS or any other illness which is so poorly understood. A lot of the time, it feels as if we're fighting against the medical profession - fighting to be taken seriously, to be given answers, and to be given help. I've lost count of the number of doctors who haven't heard of Ehlers-Danlos Syndrome, of the ones who've told me things that I know to be incorrect, and of the ones who have tried to disguise their own ignorance by burying my case under a carpet. This shows that they respect me so little that they are more concerned with appearing omniscient than they are with helping me - or perhaps they simply don't believe my symptoms are real?

Wednesday, 13 December 2017

Day 13 - school (the children)

Today I don't have a proper picture to share with you, because it wouldn't be appropriate. That's because today I'm grateful for the children I work with, so instead I'm sharing these blob trees, which I sometimes use for a fun but sneakily productive session! I work in a primary school running interventions of varying kinds for varying kinds of children. Most of the children I work with are in Key Stage 2, which means they're aged 7-11. I really love my job because I never get bored (being bored is not an option when you work with children!) and the moments when you feel a bit of a breakthrough are just incredible. I really care about the children and being able to help them, even a tiny bit, is an enormous privilege.

Day 12 - Nett

Bit late on this one because yesterday was a tough day. For Day 12, I want to thank Nett Wight, who is a brilliant horsewoman who works, teaches and coaches at the College of West Anglia, where I do riding and vaulting. Nett hasn't had the easiest time of it but that hasn't stopped her being generally amazing.
She came all the way to Hartpury to lunge me at the RDA National Championships (it's a very long way and a very long journey for a few minutes of competition) and even brought her mum along too as extra support! Having her at the end of the lunge line always gives me confidence and she has been a big part of my six national titles. At the British Champs this year I had some great horse scores which are massively down to her!
Nett always has the horse's comfort in mind and is good at getting the best out of any horse she works with. She's also good at getting the best out of me, and is strict but encouraging - perfect really. She's just fab.

Sunday, 10 December 2017

Day 10 - Paul Janssen

Today it's the turn of Belgian physician, Paul Janssen (1926-2003). He discovered/created numerous medications throughout his long and productive career, including loperamide. Because of the way EDS affects my gastrointestinal system, I have to take loperamide regularly and at the moment I'm taking it like smarties. Basically, it's a drug which is used 'to decrease the frequency of diarrohea' - in other words, it helps you out if you've got the runs!
It's kind of interesting how it works. Loperamide is an opioid which affects the myenteric plexus in the large intestine.

Saturday, 9 December 2017

Day 9 - Percy Spencer

Quick one today because I'm in lots of pain and can barely type! Today I'm grateful for Percy Spencer. He invented the microwave, without which I would be in even more pain than I currently am (yay for microwaveable wheaties) and without which I'd probably have starved! There aren't many flattering photos of him but I found this one where he looks suitably benevolent.

Friday, 8 December 2017

Day 8 - Julie

Today I'm feeling grateful for a very special and lovely lady. She's often an unsung hero and she isn't someone who'd make much of a fuss, but she's so kind, generous and funny and a chat with her always makes me feel better. Her name is Julie Holgate and she is the mother of one of my RDA group's volunteers, who is also a fabulous vaulter at Cambridge Vaulting Club. The daughter is called Isabelle and I'm going to save her for another day because she is also amazing!

Thursday, 7 December 2017

Day 7 - Father Simon

Today I'm grateful for a man who touched many lives and, if his funeral today is anything to go by, will be remembered by hundreds (if not thousands) of people with great fondness and love. The Revd Canon Simon Pothen (aka Father Simon, or just 'Farv'!) came to Chelmsford Cathedral ten years ago when I was a girl chorister. His three daughters joined the choir and subsequently his youngest son became a boy chorister.

Wednesday, 6 December 2017

Day 6 - Emm's Positivity Blog

Today has been hard, so today I am grateful for talented people like Emm from Emm's Positivity Blog. I've shared some of them before (here and here), and you can see more of her work on her website here.

Tuesday, 5 December 2017

Day 5 - Rosie and Maple

Today I'm thankful for this silly pair. Rosie will feature again because she's my near-constant companion, so I'll tell you more about her some other time (or you can see some posts featuring Rosie by clicking here). Rosie is great because she looks after me and knows when I'm poorly, injured or generally in pain - but more on that another time! The dog on the right is Maple, my brother's working cocker. She is mad and this is one of the only photos I have of her being still! They're both lovely and lots of fun. Here they are having a nice little snooze in the car on the way home from the Game Fair earlier this year. Dogs are so good for humans and we should never take them for granted!

Monday, 4 December 2017

Day 4 - Gym Club

Today I'm sharing some stills from a video that was taken this morning at gymnastics. I have an awful lot of people to be grateful for when it comes to what I've achieved in gymnastics so far. I've gone way beyond what I thought I would manage and, although I'm still working on very basic skills and making gazillions of mistakes, I'm having so much fun and I'm proud of what I've achieved! In order to get today's photos I depended on the help, support and encouragement of Iwona (coach), Lorraine (pink top), Claudia (grey top) and Becky (behind the camera). Special mention also to Hannah and Gemma who aren't in the picture but who are brilliant coaches at the club and have helped me so much. What a fab bunch of people!
When I started disability gymnastics classes in January I couldn't really walk at all without my crutch, but now I usually feel confident in moving around the gym without it. I'm still nervous about going anywhere without it outside the gym (if only there were sprung floors and crash mats everywhere I went!) but it feels amazing to be moving about without constant support even if I can only manage it for short periods of time. When I started, I needed constant support for all the moves I did - holding onto the bars, for example, or sitting on the trampoline, or using my crutch to walk along a floor beam. One of my first activities was simply sitting on a block and standing up again. It was so hard!

Sunday, 3 December 2017

Day 3 - Meghan and Emma

On Christmas Eve last year I went and did fun clear round showjumping with Rolo. Whilst there I met a lovely young lady called Emma who took some fantastic photos of us. I'm very grateful to her not only for admiring Rolo and taking some photos, but also for tracking me down and getting my email address so that she could send them to me. You can see her instagram page here.

I'll probably share some more of her photos later in the month but I picked this one today because it also shows my lovely friend Meghan, who is a talented vaulter and has helped me enormously with all things vaulting! She's kind, generous and fun and although she has her own struggles to cope with she's always ready to help others.

I'm very grateful for both Meghan and Emma!

Saturday, 2 December 2017

Day 2 - Saffron Walden RDA

Day 2 - chilly winter cuddles with this ponio at the RDA group which is now training me up as a coach! I've only been there a short time but they're so kind and welcoming, and I'm really loving it so far.

Advent calendar! - Day 1 - Springhill

One of my friends started doing this and I thought it was a good idea. I'm a day late, but you'll just have to forgive that. The idea is to share a photo every day leading up to Christmas, and I would really like to share photos that show the friendship and support that I have which help me to cope with disability and to achieve all that I can.

So, without further ado, here's day 1!
2 years ago, fun Christmas showjumping at Springhill Stables (I'm in the middle on Oscar). Kirsty (green jumper) has always been a tremendous supporter of RDA and of me! Fiona, who owns the stables and teaches us, is a brilliant instructor who has made such an impact in my development as a rider. Thank you to them and to Cambridge University Riding Club for linking us all up!