As always, a prize will be sent to each entrant, and the winner will have a chance of winning up to £100!
Send your designs to: firstname.lastname@example.org
All entries and winners announced on the 21st May!
As always, a prize will be sent to each entrant, and the winner will have a chance of winning up to £100!
Send your designs to: email@example.com
All entries and winners announced on the 21st May!
Just a short post to let you all know that after yet another bout of Sepsis starting in my long IV line, I decided that enough was enough.
I was too close to losing my life so many times, that under medical monitoring in hospital, I went ‘cold turkey’ and have detoxed completely from the Cyclizine, and am pleased that it’s something of the past!
If was far from easy and I’m still a long way from being fully recovered. The multiple sepsis alone set me back months, but the detox on top of that knocked me back even further – especially as I wasn’t able to have any visitors whilst going through the process.
However, looking back I think that blocking off communication was something that really helped me. It was the longest (and most worrying) week for all of my family, but I had a few short phone calls with my carers on the ward phone which was more of a support than you can imagine. In particular: Helen, Clara, & Angelika, thank you. I couldn’t have done it without you.
Thank you to everyone who left me a message, comment or sent me some post. Going home to the lovely surprises I did was just overwhelming and made me realise how lucky I am to have the people behind me that I do.
As I say, I’m far from recovery yet – I still haven’t been able to sit up without fainting/seizing, but it’ll be worth it in the future – to actually have a future! Hopefully – by the time lockdown ends – the benefits will really show, and Cyclizine won’t even cross my mind anymore.
I’m finding that writing and sending post is really helpful, as well as it being lovely to receive, so please comment below and I’ll be in contact for your address!
Thank you again – you know who you are. And if anyone from 8a West sees this post…thank you. Claire, Gemma, and everyone else; you made the biggest difference in particular.
Love Katie xxx
As you may or may not know (depending on if you saw my update earlier in the week), I am so pleased and so relieved to say that I’m back home, with my family and carers around me.
I’ve had countless admissions in the past 8 years and this was by far the worst.
I was so lonely and so down, put in a bay with people who were sedated/couldn’t talk, and was expected to be independent enough to look after myself.
There were nurses who spoke to me twice in 1 whole day. I wasn’t allowed visitors. I can’t crush my own meds. I can’t clean my own inner tube without the supplies next to me. I don’t deflate & refill my own RIG-J balloon. Twice my tube was blocked by registered nurses, yet they just walked away and left me to try and unblock it. It was my family who was chasing up various departments and me phoning from my hospital bed. I was nil-by-mouth for 5 days (each day my surgery cancelled), and it was only after we made a complaint that they agreed to give constant IV fluids. I had doctors who bullied me and who I was genuinely scared of, who said that it’s my fault that I’m a drug addict and ‘he’s fed up with the hallucination sob story and just move up the bed’. No one knew what anyone else was doing and empty promises were made day after day. In the end, I was so lonely, so bored, and so depressed, and I couldn’t see the light at the end of the tunnel.
I’d like to thank everyone who kept in touch, and a few people in particular:
I was overwhelmed by the replies I got on my original post and it really did help me through. I didn’t expect it, nor was it sympathy I was asking for, but to everyone who commented, messaged me, phoned me, and sent donations, thank you so much. I’m so grateful.
Now that I’m back home, I’m going to spend some time to recover, have a rethink about the project & how I’m going to run it longer term, and enjoy the time at home with my family.
I will continue to write updates like these nonetheless.
Thank you again – you don’t know how much you all helped me through the hardest couple of weeks of my life!
Lots of love,
I am calling upon all of you who have time to spare during the time you are all (hopefully) in ‘lockdown’ inside.
In order to keep my project active and to help the vulnerable in any way I can, I am starting ‘virtual visits to the vulnerable‘.
All this involves, is writing a card/letter introducing yourself and whatever else you’d like to include. YOU CAN ALSO EMAIL ME YOUR LETTERS TO: firstname.lastname@example.org AND I CAN PRINT THEM FOR YOU.
Once I have enough letters, I am going to send them to care/nursing homes, to be distributed – with a craft kit/novel/puzzle book etc. (i.e. something to do) – to the residents there who aren’t currently allowed visitors.
Any replies I receive will be sent directly back to you, and you can choose to continue contact with these people during the Coronavirus ‘lockdown’; to give those who are cut off from their families a) something to do, and b) a sense of being thought about.
I have set up a separate ‘JustGiving‘ page (https://www.justgiving.com/crowdfunding/katiefant-coronavirus?utm_term=rpnMbnexy) for any donations, which will go towards postage (and return postage materials), as well as small ‘care kits’ which will include, as mentioned, art, crafts, books, puzzles etc. to help get those who need it most through this scary & lonely time.
PLEASE SEND ALL POST TO:
66 Bevendean Avenue
I hope to send all care parcels on the 1st April 2020 – the date that I also hope to release the content for the Easter competition so that I can include that with the letters wrote & parcels put together.
If you dont have time to handwrite and post a physical letter, you can fill in the form below with your message, and i will put it into a card on your behalf:
As (most) of the nation go into isolation, each day I will be adding to this post the antics and activities that each day I have amused myself by doing! Then I will write a summary post at the end of each week (will be on my Instagram also – @katiefant_blog)
Hopefully this will give you some inspiration whilst I prepare and send group projects and activities to join in with if you’d like!
Stay indoors as much as possible for your sake, but also for the safety of others too.
Starting the week out ‘making the most of it’, we went out to stock up on 1) food, and 2) amusements. The supermarkets were more bare than I’ve ever seen them before, but luckily I stocked up on arts & crafts materials (wool, beads, paints, books etc.) in case the situation got worse and, like the other European countries (and as we followed!).
Before the lockdown I was spending time with my nephew; painting with a 2 year old is more fun than you realise! Harry was so pleased with himself and his little bunny 🐰
I’ve been redecorating my room, with photos, wardrobe handles, and personal touches such as bunting to match my bed covers..just to make it a bit more ‘homely’ and to spend some time with my carers painting and doing other decorations and crafts.
Ive been preparing for the Easter competition (which will be released on the 1st April) and again has been fun to do with my carers during the day.
In the midst of the lockdown, my Hickman Line blew late one afternoon, and it was a manic rush and massive panic to get it replaced that evening, and I cannot fault the hospital. Within an hour or two I’d been in theatre and was on my way home again (which is usually unheard of!), and they treated my increased susceptibility with the utmost seriousness.
I crocheted my first ever bag this week, and although it’s FAR from perfect, I’m quite proud of it, even if I do say so myself!
Revision and online uni exams have taken precedent this week, however, because despite everything else, I’m still as determined as ever to get my degree!
Going outside, even when I don’t want to, is keeping me sane, healthy, and topped up with the vitamin D that no one can get enough of at the moment. I’m so grateful that we have a garden, as it makes each day a little more bearable!
Please read my most recent post- ‘Virtual Visitors’, and get involved in anyway you can!
Thank you for reading!
Think of others as well as yourself. You might have a strong immune system to fight off this virus – enough to not even take much notice of it – but you can so easily pass it on to someone who is more vulnerable than you, with serious consequences that you might not have even contemplated🥱
Appreciate the NHS, those who work for it, and have some respect for those who are still putting their life on the line to treat those who need it😷
Stay indoors and stop the spread of this virus, for the sake you, your family, and of everyone – both nationwide and worldwide♥️
Each day I will upload a “diary entry” of activities I’ve been doing whilst self-isolating. Hopefully it’ll give you some inspiration to combat your boredom!
Hello everyone and welcome to life update 3!
I’m going to start off this post with the most boring things to get them out of the way; the life update will follow the bullet points below (towards the end of the page), as will the ‘Participant of the week’.
(N.B. Contact details are at the bottom of the page for easy access in case of needing to contact me).
• To start off with, I have made a ‘news & announcements’ section on the home page where information like that which follows will be posted in the future.
• To address ‘the elephant in the room’ – Coronavirus. Although it will arise at times throughout this post, I am currently writing another separate post about the virus, what it means, and some things that both myself and other organisations have arranged that can be done at home. I will link the post here once written.
• Thirdly, for those waiting on parcels/prizes/charms/kits/letters etc. I haven’t forgotten you, I’m just trying to do the most safe and sensible thing at the moment. I have decided that everything will be posted together. I don’t know when exactly – I hope in the near future – but I am aware of those waiting on post.
• Next, (and slightly more exciting!), I am working on the annual Easter competition (which I am SO excited for) and will be posted soon. I would really love and appreciate as many people as possible taking part for the sake of the project.
• As with the old project, I have decided to go ahead with looking for a company to ‘sponsor’ the projects that I run (because they obviously can’t run self-funded as they have been forever), and so I don’t have to stop the project completely. I have emailed – and will continue to email – as many relevant companies as possible, but if anyone is aware (or willing to help me find) any sponsorships, donations (in the form of money, items for care kits, medical equipment for teddy adaptions, or simple advertising on a platform so that more people can be made aware of what we do, I’d be so grateful for your help.
– Finally, you can contact me via:
This week’s Bravery Bottles ‘PARTICIPANT OF THE WEEK’ is Naomi Gilchrist. She has worked tirelessly at her rehab programme in hospital and still finds the time to put others first to send mail to those who need cheering up, or those she keeps in contact with via post. Congratulations Naomi, your prize will be sent with all of the others when I can do so.
SO, AN UPDATE ON MY LIFE…
To be honest, I haven’t got much to report! I’ve decided by my own choice to self-isolate and to limit as many visitors as possible because of the Coronavirus outbreak. With the chronic health conditions I have, and the immunosuppressants that accompany them, I have to do what’s safest for me.
However, over the past couple of weeks, I’ve seen my consultant who – to my disappointment – doesn’t expect much improvement in my health and, living my life in a lying position at all times at the moment, is something I hoped WOULD improve (and I’ll continue to do all I can to improve my quality of life).
On the flip side though, this gives me a lot of weight on things like adaptions and personal aids, because I have evidence that things (in the opinion of the medical profession) are unlikely to change in the foreseeable or near future.
Since contracting Urosepsis in August of last year and my Suprapubic catheter having to be removed, I’ve been living with an indwelling urethral urinary catheter. This has caused me nothing but problems and last week I finally saw my Urologist who agrees to putting in another SPC, and we all hoped it would be fairly quickly. With the strict guidance in regards to Coronavirus however, I have no idea if, when, or how soon this will happen, but at least he’s prepared to give it another try before the next stage up – a Urostomy (which he made clear could well be what has to happen in the future).
As I said, I am keeping contact to a minimum and only going out for critical appointments etc. such as having my RIG-J (feeding and drainage tube) replaced after it got blocked on Saturday. This meant that I had no way to gain nutrition, hydration or medication, so basically had to ‘get through’ until Monday when first thing I was phoning around, begging them to replace my tube (which at first they told me they were too busy to do). I told them that if it wasn’t able to be done today, I’d have to go to A&E to be admitted, yet at the same time I was given strict instructions that A&E is too dangerous for me, and I wasn’t to go there in any circumstances. So what was I supposed to do!? In the end, I had a ‘sit and wait’ appointment in theatres..my tube was fairly easily replaced, and now (as with all of my tubes and lines), I’m treating them like gold dust!
So, until further notice, I’ve decided to stay at home as much as possible. As previously mentioned, I am working on the Easter competition post and also a more in depth COVID-19 post (with individual and group activity ideas for those in isolation too), and I hope to get that uploaded soon.
In the meantime, I hope you all stay safe & well, listen to the advice given and consider your own circumstances when deciding on the steps that you feel are right for you.
Thank you for reading!
Love Katie xxx
I can’t believe it’s March and I’m only just getting round to my next life update!
Life has been a rollercoaster these past few months health-wise; physically, mentally and emotionally. ever since I was discharged from the hospital after the Cyclizine ‘wean’.
I thought the actual detox was hard, but the recovery period after discharge has been so much harder; on my mental health especially. My head (at times) has been all over the place and I think that’s a combination of coming off of the Cyclizine, combined with pure exhaustion from the past 7 years that’s only just catching up with me.
However, I’m lucky to be surround by family, carers, and friends, who care so much and have more faith in me than I have in myself, and so has kept me driven. They’ve got me through the bad days and celebrated with me the good, and we’ve all learned to take each day as it comes, and to value each as they pass.
So what’s been happening?
As I mentioned above, life has been hard the past couple of months health-wise, and I’ve been really struggling both physically, but probably more mentally!
The 2 biggest changes are – obviously – that I’m on 3 IV Cyclizine injections per day instead of the 16 I was on before. Having so much less of the medication in my body is probably partly the reason for the changes in my health, but really, the detox is still continuing; the hospital just taught me how to deal with the withdrawal symptoms of such.
Loneliness was the biggest problem for a long time, and having to break away from any ‘friendships’ with my carers to bring it back to a professional level within ‘professional boundaries’. When you’re spending 12 hours per day with someone your own age repeatedly for days in a row, it’s almost impossible that you don’t build a bond that it is considered a ‘friendship’, and life would be very dull and very sad if that was the case – I’d be lost without them now.
The other change I returned home to was a change in my care package; from having carers 12 hours per day to 24 (so night carers had been added to my care package). I didn’t know how I’d feel about carers being in my room all night, but it’s for my own safety overnight. It’s something I’ve simply had to ‘get used to’ with the majority of my carers, but one in particular I consider more as a friend, and I look forward to her shifts for a gossip and catch-up a couple of nights a week.
My family have been amazing as always. Everyone, from my parents to my grandparents to my siblings and beyond have been unbelievably understanding, patient and I’m so lucky that they are so supportive, even with my mood and emotions at the moment, I know I can still rely on all of them regardless.
A massive positive since is being able to get out (albeit with a hoist, reclining wheelchair, adapted car, and a carer with me 24/7!), rather than being completely bed-bound. I don’t have the time restrictions I had before (when we were clock watching for my seizures and living and planning each day around them). It’s given me so much more freedom to spend with my family, spend days out with my carers, and meet up with special, valued friends without any limitations.
What’s happening next?
As well as the other projects, I’ve been focusing on helping the homeless recently with care kits, buying lunch, and giving spare change. And this is the first random act of kindness that you can get involved in….
I am collecting as many of the ‘loyalty cards’ and corresponding stickers that come free on the side of the cup of a hot drink purchased from McDonald’s.
You can send the card with just the 1 stucjer, or you can save it until the loyalty card is full – the choice is yours.
This will enable the homeless to receive a free hot drink – something that most people value so much in the freezing weather, and is free for you to do also.
Please send the cards (regardless of the amount of stickers you have on it!) to my PO Box address, found at the bottom of this post or on the ‘contact’ page*.
Each person to participate will receive an ‘activities for all’ charm as a token of thanks.*if you require me to send you an envelope and stamp, you can let me know by email (email@example.com).
Finally, thank you to everyone who joined in the latest fundraiser and congratulations to the winner. The prizes are on their way to you all!
Thank you, as always, for your continued support through messages, letters, cards & social media. Each and every one is appreciated❤️
Thank you to all of you that entered the ‘guess the name of the zebra’ fundraiser!
The name of the Zebra is….
Congratulations to the winner..
✨ STAR PRIZE ✨
✨Amazon Alexa Echo Dot✨
Winner = SALLY CLARE 🥰
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).
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:
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:
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:
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).
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!
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:
I also hope that this year:
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!
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
TO BUY A NAME/NAMES (and claim your complimentary raffle ticket/s), CLICK THE FOLLOWING LINK:
[Once buying a name, you will automatically be entered into the raffle]
🎅🏼”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🎅🏼❤️
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.
PLEASE HELP IN SUPPORTING THE PROJECT AND THE CHANCE OF WINNING A SELECTION OF PRIZES BY PURCHASING A TICKET!
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❤️