Tuesday 9 April 2019

GUEST POST by Kirsty for World FND Week 2019

A woman in a wheelchair with a toddler on her lap sat in front of a tractor.

I've suffered from something called Non-Epileptic Attack Disorder for 11 years, since March 2008. I was 14 years old at a Hoosiers concert when I experienced my first seizure and although I've had seizure-free periods, once for 2 years!! They've always returned. They're just a part of me now, although it did take me a LONG time to get to this stage. I won't sugar coat it, it's legitimately the most painful, tiring and ultimately embarrassing experience of my life and no matter how many you have or how long you suffer, it doesn't get any easier, you just learn to live with it I guess.

On 14th August 2018, I had a normal, for me, seizure but when I came round I woke up completely numb from the waist down, unable to coordinate or even move my lower limbs and losing urinary incontinence. I'll be honest, I was so naive and oblivious to the severity at the time. I was laughing! I remember my call to work so vividly "I'm really sorry, I don't think I'll be in tomorrow, I've just had a seizure and I'm currently wetting myself!" IMAGINE IT! I honestly thought I'd trapped a nerve, I'd go to hospital they'd crack my back or something and I'd be fine. Little did I know.

I spent 8 days in hospital, I was catheterised and completely wheelchair bound.

In October, I went to get out of my wife, Heidi's, car but I couldn't. I was crippled in agonising pain with severe lumbar spasm and experienced complete left leg paralysis. Now, I was scared. I wasn't laughing anymore. My mother and father in law rushed around to help Heidi get me out of the car and called a ambulance. I was admitted to hospital where I stayed for another 8 days. This time I was prodded, poked, assessed and scanned multiple times and at the end of October I was diagnosed with FND, Functional Neurological Disorder. A disorder that means the brain doesn't communicate with the nervous system properly meaning signals are mis-communicated, slowed down or not received at all.

For me, FND effects my left leg, my bladder and recently we've established it's also the cause for my seizures but it effects different people in different ways; men and women, adolescent or elderly and its causes are unknown.

I went into bladder retrain where I was partially successful, I could now urinate for myself but suffered severe retention leading to incontinence so I now successfully self catheterise. At first, this was a massive change, however, self catheterisation has actually given me my life back! It allows me to live my life as normal as possible. There's no permanent tube to cover and I don't have to worry about peeing myself anymore or wearing nappies at the ripe old age of 25! It's quick, it's simple, it's discreet and ultimately it's dignifying for me! AND, I can pee standing up like a bloke ;)  Can tick that off the bucklist, no sheewee needed, no sitting on dirty public toilets or squatting in a bush and peeing down my legs! There's got to be benefits and for me this is a massive pro!

I was also put onto a Neurological Rehabilitation Programme which involved intense physiotherapy to try and retrain my brain to effectively communicate with my lower body again! I progressed and I came so so far! Albeit still in a wheelchair but in a much better position that I was in August! I regained full strength in my right leg and it was fully functioning! I was up on my feet, walking on crutches and furniture crawling! I became a fully fledged toddler completing toilet training and now learning to walk!
In December 2018, I relapsed again leaving me hospitalised for 3 weeks this time where I received intense inpaitent physiotherapy! This is a LUXURY to receive for this condition so although it was SO hard being away from my wife, Heidi and my son, Woody, I knew I had to grab the bull by the horns and run with it (pardon the pun, I can't run!). I progressed so much I am now able to mobilise unaided indoors on flat surfaces, outdoors I look like Bambi, but baby steps...LITERALLY! Unfortunately, upon discharge at the beginning of February 2019, I was given the bittersweet news that I was unlikely to make a full recovery from FND. A bitter pill to swallow after the rollercoaster journey I endured thinking I only had a trapped nerve! But sweet to finally have some kind of answer and some brutal honesty to be able to draw a line and move on and learn to live my life. Not just me, but my family too. 

You CAN make a full recovery from FND. It's not entirely impossible. But the retraining has to happen immediately. After reevaluating my neurological history with my seizures, my neurologist came to the conclusion that I've infact had FND since March 2008, when my seizures started, not August 2018 which is why the retraining wasn't proving easy and the results were slow moving. Essentially, my brain has relearned this as the 'new normal', like a reflex, and that's not easy to reverse. It's not impossible, but there's not a 'quick fix'. FND is so incredibly under researched and that means there's a severe lack of understanding, education, knowledge, funding and therefore treatment. Even the very few specialists there are for this condition are somewhat clueless of it too because the tools and resource just isn't available.

The lack of understanding and inability to 'fix' those suffering with FND has left a stigma around the condition, even in the medical world. I'm incredibly fortunate to have the team I have behind me, I have had to fight for admission at A&E once because of it, but I've never been at the receiving end of derogatory comments or refused treatment, and believe it or not, lots have! My GP, neurologist and physiotherapist are 100% on my team, we learn together, we fight together! And I'm truly appreciative of that, but I shouldn't be thankful for receiving brilliant care, everyone should be entitled to it!

That's why I've restarted the blog. To blog my journey. The good, the bad, the ugly! The ups, the downs and the round and rounds! The trials and errors as well as the successes because that's how we learn! 7th-14th April is International FND Awareness Week, 13th April I've signed up to do a 5km run with two of my sisters, two cousins and my son. I won't be running, but I intend to do as much as I can walking, aided, and the rest in my wheelchair but I will complete it!

If you'd like to donate to help fund research into the condition I have then please feel free to donate, all donations go to FND Hope UK, but even if you can't or don't want to do that, just sharing my story raises some much needed awareness!


This is a pretty succinct (for me!) overview of me and FND over the last 7 months! But I'll go into certain things in more detail over time I'll try and keep up to date! Working full time, having a toddler and now balancing this condition too can have its challenges in 99% of my life, but I'll certainly try! Anything you want me to write about, answer, address or have my opinion on then please do ask :) I'll be as honest and truthful as always!