EDS UK AWARENESS MONTH – design the ribbon

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: katiefant1@gmail.com

All entries and winners announced on the 21st May!

2nd (AND FINAL DETOX)

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

FULL UPDATE ON UPDATE 6: THANK YOU!

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:

  • Davina: you were my saving grace in there.
  • Lois: despite lack of contact for years and years, I couldn’t thank you more for being there for me, and for the lovely surprise post that I received when I got home.
  • Libby: for understanding more than anyone else – you were and continue to be my absolute rock.
  • Katie: for your such generous donation towards the project.
  • To Sally-Clare & Elisha for completing the Easter Challenge – the prizes have been split between you both.
  • To Shane, Amanda, Gaynor, Donna, Claire Smith, Claire Wilson & Nancy for my parcel full of goodies. It came as a wonderful surprise and I’m so grateful.
  • My wonderful carers who showed genuine care and support when I needed it.
  • To my mumma for my lovely surprise parcel that arrived today.
  • And of course, more than anything, to my family who helped from afar to ensure my care was right.

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,

Katie xxx

LIFE UPDATE 1

‘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❤️