Pssst can you keep a secret??

I didn't want to say anything through fear of jinxing myself,however after speaking to the doctors this morning during ward round it seems the plans are moving forwards… we are making plans for my surgery to happen this Tuesday coming!!In March my stoma surgery was postponed, since then we've had a desperate few months going through the motions of ...
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457 Hits
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Monday morning smiles & safe potassium levels!

A few Monday morning smiles because my potassium is finally within a normal and SAFE range! 220mmol of IV potassium infusions later and we can finally stop worrying and now monitor my bloods closely for any further drops.For anyone who's followed me for a while, you'll know I used to need infusion every week before starting TPN. Two years...
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188 Hits
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Beach trip and flat (potassium) batteries

I've been like a flat battery the past few days so haven't been online much. We're now on route to hospital as the potassium levels in my bloody were dangerously low, and magnesium levels high. I'll be admitted at QMC to have this addressed and hopefully treated, but it doesn't explain why I felt so awful! It's always upsetting to be rushed in...
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102 Hits
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'You're so lazy'..

I've grown up having people tell me I'm lazy, being told I need to get off my butt and crack on. But over the past few years, I really have learnt that rest isn't a luxury, we all need it.At one point, the idea of doing everything at 60mph and running on three hours of sleep was glamourised and made to look like the only way you can succeed. It mig...
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118 Hits
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NHS fairies- fancy dress showjumping!

We just needed to have some fun! A very wet but wonderful evening competing in the fancy dress pairs at Weston Lawns Equitation yesterday! It was just what me and Daisy needed, after not getting to go forward enough and needing fo really get her travelling, the pairs class was the perfect opportunity to get competitive, kick on and race agains...
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92 Hits
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When it feels like you're failing, take a look at how far you've come.

When it feels like you're failing, take a look at how far you've come. Even when everything feels impossible, remember how much you had to achieve to get to where you are today.   Part of having goals and keeping focussed is that you're always wanting to improve, progress and overcome the next hurdle. Whether we like it or not, success is...
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94 Hits
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Re-introducing me!

I figured it wouldn't hurt to re introduce myself to get to know everyone here a bit better- especially since there's a few new people here...if you're one of those- welcome! My name is Evie Olivia Toombes and I'm 18years old I have a few severe chronic illnesses (Spina Bifida, Gastroparesis, Pseudo obstruction, Cauda Equina Syndrome, Gilbert'...
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131 Hits
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We made it on the documentary!

Oh wow!! Not only did we manage to sneak in the background...but Daisy and I actually made the cut for The Princess Royal documentary!!!🤩🤩I nearly jumped up and hit the ceiling when I saw our faces!! So so proud to be a member of Riding for the Disabled Association (RDA) and have the honour to meet HRH on a few occasions. She really does pour every...
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375 Hits
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News flash! Are you ready?

One of my biggest inspirations and someone that I have masses of respect for The Princess Royal (Princess Anne) documentary airs TONIGHT on ITV at 9pmLast year, I was invited to give a speech at the RDA 50th anniversary celebrations alongside The Princess Royal and what an honour that was! Here's the pictures from a very special event...never will ...
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421 Hits
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I'm 18 and I don't wear pants. ‍️

 I'm 18 and I don't wear pants. 🤷🏻‍♀️You've seen me dancing, smiling and keeping up with the animals via FaceTime (which has all been lovely.)But for the rest of the time, I've been like this. Running out of nappies.Sporting the hospital XL nappy pads that could wrap about the Eiffel Tower, twice. Cleaning myself up only to need a fresh nappy ...
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1132 Hits
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Confused by some of my posts?

 Feeling confused by some of my posts and what's actually going on? Me too🙈 To be honest half of the time I have no idea what's actually going on or happening - life is very much a case of learning as I go along at the moment and I've got used to rolling with the waves of whatever occurs with my health. 🤷🏻‍♀️I can however share a few things th...
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1033 Hits
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Wobble and butt into gear!

 After a bit of a wobble and a cry when I first arrived in hospital on Monday, today has been a much better day. I'm still not sure of the plan at all, so no updates on that front unfortunately- at the moment I'm waiting for a PICC line placement so that we can start some nutrition directly into my veins (known as parenteral nutrition/PN). I w...
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847 Hits
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Bags packed and brave pants on!

 Bit of a crazy day today! Bags packed, brave face on and a pit stop to see the wonderful Daisy en route to say goodbye...we have a bed in Nottingham QMC 🏥 There's a long road ahead but it's so necessary to get the help and treatment I need, with the end goal to be strong enough to ride Daisy, visit more schools to encourage children to #FindA...
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961 Hits
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I wish I was an octopus

 These are the times I wish I was an octopus 🐙 ...can that be my #FindAWayNotAnExcuse idea today?😅🤷🏻‍♀️Today's events came a lot sooner that I'd thought they would. It's been over three years since I first began having regular infusions and blood tests, each time needing to take blood, cannulate and enter the veins with a needle once if not us...
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847 Hits
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In the times newspaper!

 A new depth of coverage in @thetimes , sharing how hospitals were given just three hours to 'adhere to policy' set by the gov health department to free up hospital beds with discharging patients. Scary to think how drastic the measures were for patients that needed to be in hospital but had to be discharged due to the hospital chiefs being pr...
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Taking each day as it comes

Trying to keep on top of things at home each day for now with some #FindAWayNotAnExcuse vibes 🤗As it stands today, the worries about covid and other infections with being admitted still outweigh the worries over trying to manage from home. We've agreed that an admission for TPN (nutrition delivered directly into my veins through a central line) is ...
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758 Hits
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Daily briefing shock

 And home for a bit of 'normality' before going back to hospital first thing Monday morning.It was a bit of a shock to listen to the Downing Street daily briefing yesterday. The government guidelines for NHS plans so far have been sufficient for supplying and saving resources to help covid patients. We anticipated that the government would pri...
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667 Hits
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Positive for how long?

 I want to remain as positive as possible, but I'm not sure how much longer we can go on like this. Hanging on from one emergency infusion to another. They used to be 1x bag a month- now it's 4x bags a week because I've declined so fast.This is still safer than being admitted to hospital as an inpatient, but when fatality by covid is worst cas...
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706 Hits
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#thankyouNHS

 Another emergency infusion of potassium today at our local hospital. Every time I come out of hospital I feel so lucky to be able to leave, and go home for a couple of days to my family. At the moment so many patients are unable to leave hospital for a prolonged period of time, others may not make it out at all due to both indirect and direct...
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530 Hits
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'What's wrong with her?'

 'What's wrong with her?'..is something I get asked quite a lot, and it's usually followed by people staring and occasionally pointing at the various tubes I'm attached to. I've been really open about my health for a while now, which has been scary yet so freeing too. So I wanted to rewind a bit and explain what's actually 'wrong with me'. I w...
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491 Hits
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