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

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!