POSTS

Zebra Fundraiser: THE RESULTS

Thank you to all of you that entered the ‘guess the name of the zebra’ fundraiser!


The name of the Zebra is….

JEMIMA ❤️✨

Congratulations to the winner..

AMANDA SPERRITT 🦓


RAFFLE PRIZE WINNERS:

STAR PRIZE

Amazon Alexa Echo Dot

Winner = SALLY CLARE 🥰


Zebra Raffle Winners:

  • Cup & Saucer Set – Robert Sanderson
  • Doorstop – Robert Sanderson
  • Pillow case – Marion Taylor
  • Scarf – Marion Taylor
  • Zebra TY teddy (white) – Lydia Walker
  • Zebra TY teddy (pink) – Cheryl Faulkes
  • Pencil case & pen – Janice Clayton
  • Sweets – Robert Sanderson
  • Passport Cover – Sally Clare
  • Toy Figures – Charlotte Gummer
  • Bracelets – Nicole Gray
  • Mug – Janice Clayton
  • Reverse sequin bag – Amanda Sperritt
  • Socks – Vanessa Walker
  • Decopatch Set – Megan Whitehouse
  • Hoody – Annie Plant
  • Purse – Charlotte Gummer
  • Keyring – Sally Clare
  • Foil Engraving Kit – Annie Plant
  • Notebook – Kathy Goodman

CONGRATULATIONS TO ALL WINNERS!

(N.B. I will be in touch with any of the above winners for their postage address if I do not have it already).

CURRENT FUNDRAISING

Due to the break I had from my blog during the past year when I was in and out of hospital, the project has no funds whatsoever. I have multiple events, competitions and activities lined up, but without the interest of the public as well as those who are chronically ill and a participant of ‘Bravery Bottles’, it’s something that I will have to put to an end if the interest is lost as I cannot self fund it forever – something which would be a shame after all of the time and effort put into all aspects of the project.

I am willing to fund it for a few more weeks until the current ‘name the zebra’ & raffle has finished, and will then have to reassess how the funds for the project are going, and how this weighs up to how the project is benefitting people (or not!).

Thank you to everyone who has bought a ‘name’ for the current fundraiser so far. Each ‘guess’ costs £3 (or buy 2, get 1 free – so 3 ‘names’ cost £6). With each ‘name’, you will get a free ticket for the raffle automatically.

To buy a ticket, go to:

https://katiefant.com/2020/01/08/fundraiser-guess-the-name-of-the-zebra/

Another negative update – sorry!

Hello again everyone & sorry for the delayed update.

I had a brief stay in hospital as my RIG-J was causing me lots of pain and – as I expected – the tube had flipped out of the Jej (small bowel where I’m fed, given medication etc.) into my stomach (which doesn’t work, and is on free drainage anyway!).

As you all know, I’m not one to moan about the NHS. I think it’s a service that we are privileged to have in the UK, and without it, I don’t doubt that I wouldn’t still be here now.

However, the medicalp pop ppparts of my life at the moment are having such a negative effect (mentally, especially), as it’s relentless. I was promised that after the Cyclizine detox – as hard as the actual process may be – my life would be 100x better.

Instead, I’m being bullied (not to use that word lightly) by medical professionals who you’d think would be at the centre of my care, but are instead making my life more difficult than it already is, and it’s honestly relentless (to the point where I don’t know who or where to turn next).

To give a few examples:

  • I feel I’m being punished for the high dose of Cyclizine I WAS on, by being treated like an ex-drug addict, especially by my GP unfortunately – the doctor who I need the closest and most open relationship with. I’m not trusted with the 3 doses of Cyclizine that I’ve been told I have to remain on (despite it being agreed that I am the one to take responsibility and administer the IV meds myself, so deliveries are daily – often within 5 minutes of the dose being due (or late, leaving me waiting). This restricts each day as it means that between 12 & 3, I have to be at home in preparation for the delivery.
  • My pain relief – which I use for dislocations, stomach pain, bladder pain, my joints (amongst more) is being stopped against my will and with no input from me. My GP even mentioned changing my lozenges to patches, to then wean down. This will mean 40 fentanyl patches stuck on my body at once, (all to be changed every 3rd day) and being left to suffer breakthrough pain – such as when I dislocate.
  • My carers/the funding body – my carers who I have 24 hours a day at home, (so who know me pretty well to say the least!) – have now been stopped from coming into hospital when I’m admitted. I’m well aware that the hospital staff are capable, but MY health needs are very complex, and very different to others; including problems that a) aren’t taught to nurses, b) don’t present ‘typically’ and c) the cause of the symptoms are still unknown. That’s aside from the emotional support and ‘homesick’ feeling that they really honestly help with.

This is a really hard time for me anyway, and a time I’m really struggling with. I need all the help I can get, yet these seemingly ‘small and petty problems’ build up and get on top of you and weigh you down.

After going through such a difficult process with the weaning programme, I just want to be at home and enjoy my life without it being completely medically-related.

I feel down, isolated, and as much as my family are trying to help me, I have no friends, and at the moment my mood is really low.

I spent a night in hospital with a broken feeding tube on Monday. I went in for multiple reasons:

  • Pain relief whilst my bag wouldn’t drain
  • Receive my normal medication but via my Hickman line whilst my RIG-J was broken
  • Fluids for hydration whilst I couldn’t have my feed through my tube
  • To have my tube replaced!

Out of the list above, the only thing that was addressed by the hospital was the tube replacement, which was done the following day.

Below are what, in my opinion, was wrong on the part of the hospital.

(Many people won’t agree with me listing their faults, but I’m pointing them out to highlight the strain on the NHS currently).

  • I waited 9 hours to see a medical doctor.
  • Despite my dislocations, I was placed on a trolley in the corridor, where I waited 14 hours for a bed and a cubicle.
    • Even then, no pillows were available.
  • Poor handling and use of my Hickman Line, (my life line!), put it at risk of permanent damage.
  • There was no time to find a doctor to prescribe fluids.
  • There was no time to find a doctor to write up my regular RIG-J meds as IVs, so I didn’t have them.
  • By the time I saw a doctor, we were into the next 24 hour period and so I was able to have my own pain relief.
  • I had no access to a suction machine for my tracheostomy.
  • I wasn’t offered anything to drink (or eat) all the time I was there.

It’s fair to say that I was so pleased to get home!

As I say, I’m not moaning aimlessly in particular, but more to highlight the stress and strain that the NHS are under and the staff at having to face, which I appreciate is completely out of their hands!).

Anyway, I apologise to everyone for my miserableness lately. I’m doing all I can to improve my own mental health so I do hope it’s only temporary and I’ll be back to my normal self asap!

Reflecting on 2019

Looking back on this year, the one thing that stands out the most is completing the ‘detox’/weaning programme from Cyclizine – an anti-sickness drug that I’ve been on 16x per day for years, and up to 30x per day prior to that..the legally prescribed limit being just 3; a goal I didn’t think I had a chance at reaching, but in 9 weeks – against all odds – I did manage to reach.

As part of my promise to myself with my blog posts this year, I’m taking the weight off of my own shoulders to put on a ‘brave face’ and pretending everything is going in. an upwards direction in terms of my health; when really, everything is falling to pieces.

Completing the detox was the hardest, most tiring, difficult thing I am yet to have faced in my life; but a necessity, and something I needed to do for the sake of my life.

In all honestly, until I cut down my Cyclizine dosage to the safe prescription limit whilst doing the detox back in October/November, I have very little memory of the rest of the year. My memory is still affected now – long and short term, and I often forget mid-sentence what I was about to say.

My memory has been hugely affected; I’ve lost years to the drug & I’ve lived the majority of my life through photos and videos, but my concentration has also been affected to an extent that – along with my memory – means that I’ve had to put on hold a lot of the things that I enjoy (including my Law degree, blog & project, and even the smaller things like reading, keeping in touch with my friends, and continuing my BSL qualification).

A positive this year however, has been the fitting and use of a hoist. Despite twice daily seizures, multiple faints when my head is raised above 45 degrees (on a good day), dislocations of all joints with minimal force (like bumps in the road), and severe allergic reactions to the most subtle of smells, It has enabled me to be safely transferred into my reclining wheelchair and able to go out; to town, Brighton Marina, or just locally to where I live.

This year, my body has also taken on the toll of Sepsis; not once, but 7 times. It’s originated from my chest, Hickman Line, bladder (Urosepsis), and crystallisation of the sediment in my bladder that caused the catheter to snap off and remain floating in my bladder.

This year, and the toll of the past 8 years, really has finally taken it’s toll on my mental health, and I’m not going to pretend that everything is okay – because it’s not. I have anxiety beyond control and depression that is becoming more and more prominent.

I’ve been so lucky to have had some amazing carers, many who I’m still getting to know now, and some who I have unfortunately had to say goodbye to as they move on with their lives too. I couldn’t ever include everybody, but at the same time, this year wouldn’t have been the same without a particular few carers; Clara in particular – you’ve been amazing; as a carer, friend, rock, and support for us all, and Tiffany – ‘Thank you’ wouldn’t ever portray the true, underlying, appreciation and gratefulness we hold for all you’ve done for us this year.

And of course my family have been amazing (as they have been since day 1). Although I feel a burden, and at times like everyone would be better off without me, their love and support has never faltered, yet I couldn’t ever show my appreciation to them.


I have set myself a few targets for this year, ‘resolutions’ if you will:

  • Firstly is my blog & fundraising. I hope that over the course of the year I can raise £1000.
  • Secondly is my degree, and I’d love to complete the next module – Law and Medical Ethics – a step closer to gaining enough credits to graduate.

I also hope that this year:

  • My health and my healthcare reaches a level where the stressfulness is relieved from those around me (as well as myself, but for me, more important is my family)
  • I meet more people who I can talk to, socialise with, and live locally to me, so that I can be proactive in improving my mental health.
  • I can continue to help others by developing my blog.

Thank you to everyone who has impacted positively on my life this year – even 1 text makes more of a difference than you realise!

I wish you all a happy and healthy 2020!

FUNDRAISER – Guess the name of the Zebra

THIS IS A DUAL FUNDRAISER – INVOLVING BOTH A RAFFLE AS WELL AS ‘GUESS THE NAME OF THE ZEBRA’.

Below are a list of names, one of which is the name belonging to the zebra teddy in the wheelchair below.

The real name of the Zebra is written on a tag, which is placed in the pocket of the zebra’s jacket.

‘NAMES’ cost £3 each, or are 3 for 2 – giving you a ‘free name’ if you purchase 2 names (or more). Each ‘name’ is theoretically a free ticket for the raffle too.

When all the names are sold, the name will be revealed, and the winner will receive a personalised ‘Build-a-Bear’ teddy, as well as an Amazon Alexa ‘Echo Dot’ (see picture below).

The raffle will then be drawn at the same time, and the prizes assigned to each ticket, so will be revealed to the winner at the time, live on camera.


The raffle prizes are:

Cup & Saucer Set, Doorstop, Pillow, Scarf, Small pink TY teddy, toy figures, Medium white TY teddy, Pencil case & pen, Sweets, Passport Cover, Bracelets, Mug, Reverse sequin bag, Socks, Decopatch Set, Hoody, Purse, Keyring, Foil Engraving Kit, Notebook


The possible names of the teddy are listed below;

N.B. (X) = name bought already

  • Arnold (X)
  • Annie (X)
  • Bertie (X)
  • Betty (X)
  • Clive (X)
  • Charlotte (X)
  • Donald (X)
  • Delilah (X)
  • Eddie (X)
  • Ellie (X)
  • Frank (X)
  • Florence (X)
  • George (X)
  • Georgina (X)
  • Harold (X)
  • Harley (X)
  • Isaac (X)
  • Isabel (X)
  • Jimmy (X)
  • Jemima (X)
  • Kevin (X)
  • Kerry (X)
  • Lenny (X)
  • Laura (X)
  • Marley (X)
  • Molly (X)
  • Noah (X)
  • Nina (X)
  • Oscar (X)
  • Olivia (X)
  • Peter (X)
  • Penny (X)
  • Quentin (X)
  • Ronald (X)
  • Rachel (X)
  • Simon (X)
  • Sammy (X)
  • Tommy (X)
  • Tara (X)
  • Una (X)
  • Victor (X)
  • Victoria
  • Wilfred (X)
  • Winnie (X)
  • Xavier (X)
  • Xena (X)
  • Yasmin (X)
  • Yusuf (X)
  • Zack (X)
  • Zoey (X)

TO BUY A NAME/NAMES (and claim your complimentary raffle ticket/s), CLICK THE FOLLOWING LINK:

https://form.jotform.com/200086230835044

[Once buying a name, you will automatically be entered into the raffle]


MERRY CHRISTMAS

🎅🏼”Merry Christmas to you all!”🎅🏼

Below are just a few photos of the lovely few days I’ve had celebrating Christmas.

I think I’ll sleep for the next week, but being the first Christmas at home (as opposed to hospital), it’s been so worth it.

Thank you to everyone who sent me cards & gifts..I’ve been well and truly spoilt.

I hope everyone has enjoyed the festive period as much as I have🎅🏼❤️

PROJECT RELAUNCH!

I’m pleased to finally be able to say, that my blog, Bravery Bottles & other projects is officially ready and can be accessed under the same URL (www.katiefant.com).

There are still a few tweaks and changes to be made, but Christmas is approaching and a raffle waiting!

I apologise for my absence over the past year – I’ve had a really tough year or 2 – but I’m only looking forward from here!

The project is still completely funded by myself, so any donations are essential and so greatly appreciated. Head to the ‘Christmas Fundraiser’ page, and buy a ticket for the chance to win as we countdown to Christmas Day.

TICKETS CAN BE PURCHASED UP UNTIL TOMORROW AT 3pm, AND THE FIRST DRAW (of 2 winners, which will continue each day) WILL BE AT 6pm.

Tickets cost £5, and can be purchased here, but you can read the full fundraiser post (including prizes) here.

PLEASE HELP IN SUPPORTING THE PROJECT AND THE CHANCE OF WINNING A SELECTION OF PRIZES BY PURCHASING A TICKET!

‘CHRISTMAS COUNTDOWN’ FUNDRAISER

This year, the Christmas fundraiser – which is also combined as a ‘relaunch raffle’ for the website – is a ‘countdown to Christmas’ raffle. 

Every day leading up to Christmas Day from the 17th, a ticket will be drawn, and the owner of the ticket (i.e. the winners!) will be listed.

Then, on the 24th December, the winners will choose from a selection of prizes (see photos below), in reverse chronological order, and they will be posted on that day.

There will be a final draw of a single ticket on the 25th – Christmas Day – and that person will win the secret star prize.

Tickets cost £5 each and can be purchased up until the end of the raffle. EVEN IF YOUR TICKET IS DRAWN, IT WILL BE RETURNED AND WJLL REMAIN IN THE RAFFLE (so you could potentially win again).

*Top tip: the earlier you buy your tickets, the more chance you have of winning (& of winning multiple times!).

> TO PURCHASE A TICKET, CLICK HERE (www.paypal.me/braverybottles/5) <


ANNOUNCEMENT: THE WINNERS OF THE RAFFLE, (EXCEPT FOR THE FINAL DRAW OF THE STAR PRIZE) ARE LISTED BELOW AND EACH WILL BE CONTACTED THROUGHOUT THE DAY TO CHOOSE YOUR PRIZES; CONGRATULATIONS & THANK YOU TO ALL INVOLVED. TICKET SALES WILL CLOSE A FEW MINUTES BEFORE THE ANNOUNCEMENT OF THE STAR PRIZE (TOMORROW) AND THE DRAWING OF THE WINNER WILL BE LIVE. YOU CAN STILL BUY YOUR TICKETS FOR THE COST OF £5 (BOGOF) BY CLICKING HERE.


Thank you to everyone who has bought tickets for the raffle so far! Due to the short organisation & notice, you can continue to purchase tickets up until the final day of the draw. The difference is that all winning tickets, once chosen each day, will be re-entered into the drawfor the chance of winning again.


The winners are as follows:

17th: Robert Sanderson

18th: Charlotte Gummer

19th: Trudy Pearce

20th: Helen Pumfrey

21st: Marion Taylor

22nd: Nancy Darmanin

23rd: Tamara Clarke


*24th (STAR PRIZE)* – ANNOUNCED LIVE ON CHRISTMAS EVE


SPECIAL OFFER:

CLICK HERE TO:

– BUY 1 TICKET, GET 1 FREE

Please continue to support the project and buying your tickets!


‘Detox Admission’

I purposely haven’t posted this until now, because I genuinely never thought I’d achieve the target that’d been set for me (and I’d set for myself). Now that I’m back in my own bed where I belong, I can safely say that although I’m glad to be home, the team in ICU at PRH are the best medical team I’ve ever come across.



As some of you may or may not know, part of my daily medication (a combination of tablets, vitamins, lozenges, patches, effervescent liquids, injections/infusions, artificial supplements and jejunal feed) is IV Cyclizine, administered at home through my central venous line (Hickman Line), all in aid of helping to manage the many conditions that I live with.

Cyclizine is used for a multitude of reasons (H1-blocker anti=histamine, a sphincter relaxant, an effective method for gut motility problems, and various other reasons but, it’s main use, above all – is as an anti-emetic, which was the reason I was primarily prescribed it initially (a decision made by healthcare professionals within the NHS). I’m not, nor would I ever, however, doubt that I was prescribed it without positive intentions nor in my best interest at the time.


Around the beginning of 2017, my teeth (all of a sudden) after having relatively healthy and well-looked after teeth for the majority of my life) started to go downhill – breaking and crumbling to a severe extent, and at a faster pace than I could maintain hygienically. Having already had the diagnoses I did and knowing that I didn’t adequately absorb (nor tolerate) antibiotics via my RIG-J, the doctors were left with little other choice than to give me a course of IV antibiotics.

My weak immune system, low bone density (osteoporosis), the effects of certain medications I was taking (such as prednisolone; a steroid), and the fact that I was bed-bound (and therefore deficient in Vitamin D; a component of bone protection that you get mainly from the sun), and the high sugar content my Fentanyl lozenges/’lolles’ ,may well have exacerbated or accelerated the damage, but the origin was put always put back down to my Ehlers-Danlos Syndrome.

The cause, for me, however, was irrelevant. When you have multiple, complex, long-term/chronic illnesses, you tend to have a higher pain tolerance, not because you get used to it, but you learn to live with it. However, the sensitivity, abscesses, nerve exposure, and pain that I was in for month after month for over a year was indescribable. I’m not exaggerating when I say that for every hour, day and night – I was woken, and waking my family (my step-mum mostly), begging for some sort of relief. I was going through tube after tube of Oragel (local anaesthetic gel), and was relying on that, in combination with Paracetamol, Tramadol, Fentanyl, heat pads, and hot drinks, to get through the worst of it.

Aside from the toothache, I could not stop being sick – meaning the anti-sickness medication also had to be given intravenously (directly into the blood stream.

The severity of the infection – in combination with the administrative route and strength of the antibiotics – called for a requirement for additional medication to treat the additional symptoms that presented in the acute infection phase (sickness, nausea, pain etc.) that lasted for about a year, all the while the specialists were coming up with an answer. The result of this then, however, was the development and need for secondary treatment of side effects that come with the original medication for the infection (medication for pain, sickness, insomnia etc.).

After thorough investigations, being passed from speciality to speciality, and doctor to doctor for nearly 18 months in total, the results came back as just 4 of my 32 teeth were salvageable with fillings/crowns and deep-root canal. I was at the point where I just needed the pain to be gone, and so opted myself for full dental clearance (with the view of hopefully being fitted with dentures around 6 months post-surgery after all healing was complete).

The length of time from start to finish of being on the treatments I was, meant that after surgery upon withdrawing from the antibiotics and other treatments (the anti-sickness – IV CYCLIZINE, mostly), we noticed that my body had become physically dependant on the medication). I was suffering from symptoms as extreme as seizures, and that trauma was leaving me confused, disorientated, and suffering from hallucinations which would only improved when a dose of Cyclizine was given.

Having the physical faint or seizure was one thing, but the hallucinations were by far the worst..they were terrifying. Seeing anything from ants on the ceiling to tarantulas in my bed, to thinking people were following me or my family were trapped in fires and worse. Written down here now, it seems as stupid as it sounds, but in the moment at the time of suffering from them, they were terrifying.


Over the course of the past few years, the dose of Cyclizine – some days – climbed up to nearly 30 (a lethal dose that’s 10x the recommended limit), but averaging about 16 vials per day.

With very little case studies or literature on Cyclizine dependancy, however, for the past year, the healthcare professionals in charge of my my care approached every hospital in the UK, all of whom turned me away, leaving me deflated and not knowing where to turn.

Then all of a sudden, my bladder problems worsened and my suprapubic catheter began blocking every day without fail, and crystallisation of the sediment caused the end of one of the catheters to snap and break off, left floating my bladder.

Reassured by the community AND urology nurses that no harm would arise, they were happy to leave it for a later time (as happy as I was to avoid another operation and another admission.


That brings me to over 2 months ago, when my local hospital admitted me to ITU in Urosepsis. After a gruelling course of antibiotics, I then had to be transferred to a different hospital site where the urologists were based, and who performed a urethral scope and (surprise surprise!) found and removed a very infected piece of catheter.

I was then admitted to ITU who – at the time – was governed by the most lovely team of nurses and doctors who identified my desperation to not have my life ruled by Cyclizine, and who kindly agreed to admit me and – along with the pharmacologist ‘in charge’ – give me a chance to withdraw from the Cyclizine under controlled conditions.

Every single nurse and the vast majority of doctors & consultants could empathise with the situation I was in, recognised that the life I had (which had rendered me bed bound for around the last 3 years – deteriorating mostly in the past year) was not one that the average 23 year old should be living. The more they got to know me too – hearing stories of going to uni, with aspirations of studying Law and becoming a barrister – the more that they just wanted me to get my life back as much as I did.

The aim was set at just 3 regular doses of Cyclizine per day; a number I never thought I’d get close to achieving before giving up, going home, and accepting that one day, my life would most probably be cut short from the medication, but to live my life as much as I could without this being at the forefront of my mind.

So, I snatched the opportunity whilst it was being offered, jumped straight in at the deep end; starting the reduction plan that day. I was determined to get my life back; and get back home to where I belong.

It took 9 weeks for me to get down to just 3 doses of IV Cyclizine per day, and I won’t pretend otherwise – they were the hardest 9 weeks of my life. There were multiple times where I didn’t think I could cope and I was ready to throw my hands up and give in altogether. Thankfully, I had the best support around me to pick me back up when I was having a bit of a wobble.

Were it not for the lovely nurses and doctors, carers (Tiffany & Clara in particular – thank you just isn’t enough, but I wouldn’t have been able to get through it without you both) and my family who provided unbelievable support and restore my hope and faith in myself, I wouldn’t have stuck at the plan that I put together with my consultant, and I wouldn’t be at home on 3 Cyclizines per day today.

The ward and the staff were amazing, and whenever I doubted myself, they reminded bn that I COULD do it, and as it turns out; I could. I was discharged last week, SO excited to see 1) my cat (!), 2 my nephew, and of course 3) the remainder of my family; some still to come..and apart from a few blips, I’m at home; well on the way to getting my life back.

I kept a diary of my progress as I went along, which I’ll definitely share with you when I’m ready to do so😊


The day after returning home, I received a booklet that the nurses had been keeping for me (unknowingly), and apart from anything else, it’s SO lovely to see just how far I’ve come. It reminded me of times where I was delirious; trying to climb out of bed, pulling out my feeding tube in the process (meaning multiple trips to Brighton for a new one), ending up needing the hover-jack to get me back into bed, and seeing all of the ‘downs’ gradually improving to ‘ups’. It’s a reminder of just how hard it was from a different perspective; but ultimately, it showed the process of achieving my goal, and the lovely help I had along the way from people I’ll never forget❤️