I'm 18 and I don't wear pants. ‍️

 I'm 18 and I don't wear pants. πŸ€·πŸ»β€β™€οΈ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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Confused by some of my posts?

 Feeling confused by some of my posts and what's actually going on? Me tooπŸ™ˆ 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. πŸ€·πŸ»β€β™€οΈI can however share a few things th...
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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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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 πŸ₯ 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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I wish I was an octopus

 These are the times I wish I was an octopus πŸ™ ...can that be my #FindAWayNotAnExcuse idea today?πŸ˜…πŸ€·πŸ»β€β™€οΈ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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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 πŸ€—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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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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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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#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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'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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Feeling helpless in A&E

After two infusions bags of potassium my Nottingham team requested another blood test to see where my levels were at and we were astonished to learn that they were still low and I'd need further urgent infusions. I packaged a bag, grabbed some catheters and jumped in the car expecting to have another bag and come home.I was soon admitted to the amb...
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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.πŸ™ Safe to say I miss riding Daisy and competing so so much- it feels a world away from my current...
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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.πŸ€”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 stabili...
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Bringing the Easter cheer to hospital!

  I'm hoping the Easter bunny will bring me some extra potassium so I can stay home this bank holiday weekend! 🐣We're always trying to make the 8hour infusions a bit more fun, so when mum found a pair of bunny ears it seemed only fitting to wear them for my infusion.Me and Spud spent the morning playing pro Easter bunnies, planning an egg...
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Recently I've felt like just a patient more than ever

 After a call from 111 with my blood tests results, we headed straight to hospital early yesterday morning as my potassium levels had dropped critically low. This happens nearly every week and I often post about it, but it doesn't change the fact that every single time can be life threatening due to the effects low potassium has on the heart a...
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Daisy update!

 A whole week of not seeing Daisy has got me feeling quite lost at the moment- having her usually gives me something consistent in life that I can rely on so not having that to balance all the struggles with my health is taking a lot of adjusting to. (Even though I've become far too weak to ride over the past few days.)It certainly brightened ...
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Back in the place I was trying to desperately to avoid

It's the first time I've felt really vulnerable since being discharged from Nottingham last week. My potassium infusion was due and with it being classed an emergency due to low levels t(as always) it wasn't as option to skip or postpone.Going without my infusion and staying at home on lockdown (given how dangerous low potassium levels are) would a...
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The new normal it seems!‍️

I'm slowly adjusting to the changes we are all making to everyday life so far. It feels unfamiliar, strange and worrying- but with the reason behind these measures it is so necessary and important. I tried to get my Find A Way Not An Excuse head on (as I like to call it when I need to stop moping around!) yesterday I began to structure my days a li...
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Will my surgery be postponed? COVID-19

 Feeling suitably grim and unfortunately with news to match!πŸ™ˆπŸ™Me, mum, the gastro Dr and the colorectal surgeon all met today during wardround to speak. Due to the current climate our NHS has been dropped into with little notice, and the top priority being minimising risks for all patients, the decision has been made to postpone my surgery unt...
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