Evie

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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Evie

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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Evie

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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Gastroparesis Spinabifida Gastroparesis Find A Way Not An Excuse
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Evie

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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Evie

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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Evie

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 pr...
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Evie

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 ca...
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Evie

Straight back to hospital

 I've gone from needing infusions once a week to needing them every other day. Blood test results are all over the place and we have no clue as to what's causing it, but at least there's a reason I feel like a wet sock and keep collapsing at night.🙁 Safe to say I miss riding Daisy and competing so so much- it feels a world away from my current...
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Evie

Finding a new 'normal' during the pandemic

 I feel like I'm in the odd stage of finding some new normality in this pandemic, whilst also feeling more uncertain than ever.🤔 A big question that's been weighing on my shoulders recently has been 'how much poorlier am I going to get until we can resume normal healthcare?' I was due to have my surgery and be on the way to finding some stabil...
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Evie

New Year, new body?

 I'm trying not to get too caught up in making New Years resolutions based around general health. If I could, I'd love to improve my health in the name of new year new me, and it's amazing that so many people are keen to do that. But chronic illnesses don't renew their presence each new year, giving you a chance to start again. It's a weird pl...
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Evie

A very happy new year!

I'm both excited and terrified for what the next year holds. With possible surgery options and further battles with doctors most likely ahead, (since the not so seemingly human right to be healthy has to be fought for tooth and nail with my consultant.) But also the fun and plans I have with Daisy, alongside some big ideas for the foundation and my...
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Evie

Confusing Doctors for 18 years!

After a restless time with leg spasms and cramp the night before, I was so pleased to be celebrating my birthday at home and not in hospital, even on minimal sleep! Jay the Shetland was very amused that I'd asked to open presents in the cabin with him, I'd say that was definitely a 'living my childhood (and current) dreams' moment- a birthday with ...
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Evie

Back where I belong

 Huge smiles to be where I belong after what feels like forever ...with Daisy the Dinosaur❤️ Feeling even better now I've seen this special girly and enjoyed a walk round the village🍂🍁 For now the plan is to be seen monthly by the nutritional team at Nottingham, in the meantime we've finally been able to secure an appointment for a couple of w...
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Evie

Home!

 5weeks later, the bags are packed, PICC line is out and discharge letter is signed. ITS HOME TIME!🎉
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Evie

Starting Parenteral Nutrition

 Feeling utterly terrified but also so grateful. A huge milestone passed as I've officially began Parenteral Nutrition since having my PICC line placed earlier this week. (The solution bag has to be kept under the red bag to protect it from daylight due to how sensitive it is.)Tonight I've managed to sneak away from my hospital room to the pat...
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