Sunday, 17 December 2017

Day 17

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.
Emily (in the checkered shirt) when we went to visit the Milton Brownies to talk about RDA
Lately, Emily has come on leaps and bounds in her riding! Recently I've seen her cantering and jumping - solo! - for the first time and I'm just astonished at how far she's come. Her confidence improves every time she gets on the horse and this was really shown recently when we had our end of term lesson.
Although in fairness, she was pretty good when she won these in 2016 too!
We were playing all sorts of gymkhana games and there was a point when the horses all got a little excited and cantered to end instead of trotting. Emily had never cantered on Danny before but she responded perfectly - she sat up, dug her heels down, held her hands steady and calmed Danny down. When he stopped, although she was initially a bit unnerved by the sudden change of pace, she soon looked calmer, smiled and got ready for the next game!
Emily is also immensely kind - she bought me this wonderful present (see video above). She cares so much about other people and is the kind of person I would love to be.

Day 16

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. Most importantly, he is very good with Rosie - which is, of course, the most important yardstick. Saying anything else would just be horribly sentimental so I'll stop here!

Saturday, 16 December 2017

Day 15

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

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?

In this context - because this is meant to be about gratitude after all! - every medical professional who listens, takes you seriously and THINKS about what would be helpful! It's all we ever want but with the NHS it's not always what you get. I should also be grateful for the times it's saved my life. Well done NHS!

If you'd like to know a bit more about how it feels to have a disability caused by a little-known syndrome, and how medical professionals can help me with that, please read on...
To be honest, it can feel like I'm a parasite: I take and take from the NHS, and give nothing back. We are consumers with no control; demand greatly outweighs supply and the medical profession does not need to worry too much about our opinion. I am, of course, aware that the majority of those I meet in hospitals and clinics do want the best for their patients. I'm aware that they are under-funded and over-worked. I'm aware that they're only human and that they can still make mistakes. I'm aware that their job is difficult. All I would like from those doctors and nurses who don't make the decisions about funding and facilities is that they do one simple thing: stop worrying about being the best. You don't need to know everything about my condition (and, giving that you've just asked me how it's spelt, I'm guessing that's not much). You just need to have the humility to admit that you don't know; that you need to ask for help; that at the moment the situation is way beyond your capabilities and experience. Admit that you aren't omniscient and you can't fix me. That is so, so much more appreciated than fobbing me off!

Wednesday, 13 December 2017

Day 13

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

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

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. The myenteric plexus is part of the enteric nervous system, and gives intestinal tissue its motor messages (i.e., it sends neural messages to tell the intestinal walls to contract and relax). μ-opioid receptors in the myenteric plexus are activated which relaxes the tone of the intestinal tissues, allowing all the food that's being digested and gradually turned to poo to hang about a bit longer! There's therefore more time for water to be absorbed from the proto-poo (I made that phrase up). Loperamide also helps to limit the gastrocolic reflex, which is the clever part of your body that decides to make space for new proto-poo after a big meal by evacuating the rest of the gut!
It's a cuddly colon!
EDS affects my GI tract in a weird way. The first part of it (as far as the stomach) mostly doesn't do very much. Stuff stays in my tummy for ages and I have gastric reflux all the time (for which I take esomeprazole every day). My lower gut, on the other hand, likes to get the job done. It's all very well, but sometimes I wonder where it's all coming from as I'm quite sure I haven't eaten as much as comes out! It's not very nice having all the cramps and the needing to dash to a loo, which is why today I give thanks for Paul Janssen for coming up with loperamide, which helps me to spend more time having fun and less time in the bathroom!   

Saturday, 9 December 2017

Day 9

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

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!
Julie and Isabelle with Sandie, watching me at the English Championships 2016 with a degree of nerves!
Julie does a huge amount of work behind the scenes to raise money for the vaulting club, and she has also supported the RDA on many occasions. She works tirelessly but never gets grumpy! She never has a bad word to say about anyone and she always notices when someone isn't feeling well or is unhappy. Julie is a bit like a guardian angel and her presence makes you feel even better when you're already feeling good, or is reassuring when things aren't so great. Last night she helped me with a problem that had been making me feel really rubbish just by having a fresh perspective and also, magically, a plan to improve things!
Hug with Boris's big head in the way!

I am so grateful to Julie for everything she does. I'm sure she'd say she barely does anything, but that's probably just because she's naturally such a wonderful human! People like her are exceptionally rare and I just feel so fortunate that she is a part of my life.