Wednesday, 13 April 2016

Functional Neurological Disorder awareness day

Today is Functional Neurological Disorder awareness day. This time last year, I don't think I even knew what FND was. How things have changed..

This time last year, I had already had a stammer many months- the only symptom that pointed to FND prior to my health well and truly collapsing due to this disorder in October 2015. This time last year, a family member had recently had their first recognised seizure- the seizure that would lead to their FND diagnosis. FND was creeping into our lives, but little did we know the devastating impact it would have in the months to come.

FND has caused some of the most distressing, horrendous symptoms and experiences I have ever been through. Some are so awful that they haunt me and I feel unable to discuss them openly. It's hard to write about all this, so tempting to let this awareness day pass without speaking out, but if I don't create awareness among the people I know, then who will?

My journey with FND started innocently enough- faltering over occasional words. This became more frequent. I started going to speech therapy, working hard on techniques to give me some control back over my speech so that I could express myself, and attempt to appear fluent. I sat in a room for hours with James, my Speech and Language Therapist who has vast experience with stammers, finding ways to get round even the trickiest of sounds. Sometimes we'd sit there and I'd read down lists of 3 letter words he'd written out for me- words that were incredibly challenging for me to say. It reminded me of going back to first school, learning to read- but that had come so naturally, whereas this was a huge struggle. I'd seem to make real progress, and then would be put on the spot by something like a waiter asking for my order, and no sound would come. The more I willed the word to escape, the more unlikely the word was to be vocalised. It was excruciating, and frustrating having been fluent for so many years. That symptom was difficult, and it scares me that it could return at any point. But that was nothing compared with what was to come. 

I got a diagnosis very quickly after my body failed me completely. In that sense I was lucky. But the whole experience has been unimaginably difficult.

Nothing prepares you for your body contorting and being completely out of your control. Nothing prepares you for being unable to work out how to get your feet flat on the floor, for being unable to control your limbs, for your body to become so unimaginably weak. Nothing prepares you for sitting battling with a knife and fork, desperately trying to feed yourself, and refusing any help from staff, despite being in serious need of the nutrition. Nothing prepares you for being fed by your mum, for your teeth being cleaned for you, for being lifted on and off toilets and bed pans, for being slid around and hoisted, for straws being placed in your mouth because you're unable to lift a cup, for food being taken away because they deem you currently too weak to safely swallow, for trays of food being placed next to you and then being taken away again before you've recovered from a seizure enough to eat it. Nothing prepares you for your body failing you so catastrophically, for the constant prodding and poking, for doctors constantly meddling with your medication regime, for decisions being made and discussions being had about you, without you. Nothing prepares you for the rather dismissive doctors (because it won't kill you), the nurses that don't understand, the healthcare assistants who drag you to your feet because they're unaware you've had a set-back and are no longer able to stand and take any steps.. Nothing prepares you for A&E staff that abuse you because they lack ANY understanding of the condition you are afflicted with. Nothing prepares you for being flung around mid-seizure by members of staff thinking you're choking, because your airway becomes completely obstructed. Nothing prepares you for becoming completely reliant on a wheelchair. Nothing prepares you for 10 weeks of the same questions every hour 'do you need the toilet?' 'have you opened your bowels today?' 'do you need help with your drink?' 'have you got your buzzer?' 'what's your pain score out of 10?' 'what pain relief would you like?'. Every hour. Sometimes if I had my eyes closed I'd keep them closed when they picked up my clipboard, so that they'd simply chart me as asleep and I wouldn't have to answer the inane questions.. Nothing prepares you for the complete lack of privacy, and the complete lack of space to be able to process things and come to terms with everything. Nothing prepares you for the constant screaming and wailing of fellow patients. Nothing prepares you for wanting to scream, but being unable to, for wanting to walk, but being unable to, for wanting to speak, but being unable to, for wanting to open your eyes, but being unable to, for wanting to breathe, but being unable to, for wanting to return to normal, but being unable to. Nothing prepares you for lying in a body that you have zero control over, no matter what is done to you. Nothing prepares you for how incredibly vulnerable that makes you feel. Nothing prepares you for the people wandering around the ward, for them appearing at your bedside, for the stories of people waking up to confused patients standing over them. Nothing prepares you for having so little control over your life and what is happening around you. Nothing prepares you for all the alarms and chaos, sleeping in a room with random strangers, and watching people battling for their life. Nothing.

FND struck me out of the blue, turned my life upside down, and the effects were devastating. I didn't see it coming, and the effects were unimaginably and inexplicably awful.

But nothing prepares you for the kindness and empathy shown to you at times either. I'd never have thought I'd make friends while in hospital. I'd never have thought I'd deeply respect so many people- both patients and staff members. Some staff members went above and beyond for me. Staff that were over-worked, under-paid, and dealt with a lot of stuff most people don't have to. The messages of support from friends and family, people going out their way to visit me, people sitting with me when I was completely unable to respond to them, but their presence helped- these experiences were heartwarming, and have made the whole experience tolerable.

FND has led to some really awful experiences- experiences that no-one expects to face as a young adult, experiences I wouldn't wish on anyone- and some of them have been caused, or worsened, by a lack of awareness of the condition. Can I explain the biology of FND in great detail? No. And neither can most doctors. Most neurologists 'get it', at least to the extent that they realise the level of disability it can cause, but non-neurologists often have little understanding or appreciation of the disorder. My intention is not to give you in-depth details of the disorder- I've already described this to the best of my ability in my last post. My intention is to make more people aware of the existence of FND, and to give people an idea of how horrendous the condition can be. Is it easy to speak out about things that people don't understand? No. But if all I can control right now is my little corner of the Internet, I'm at least going to use it for good and raise some awareness of this awful disorder. For me, and for the many, many others affected by this condition.

Thanks for reading and for becoming more #FNDaware!

4 comments:

  1. Thank you for sharing your experiences. It was a very brave post to write! I wish you all the best X

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    1. Thank you- that means a lot! 😊☺️ X

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  2. Really interesting, have always loved your blogs. I am starting a blog myself to do with cfs/ME. Have you got any tips? x

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    1. Aw thanks ☺️ Good luck with your own blog, and I hope you find it enjoyable and cathartic! I think it's great way to express yourself, but stay true to you and be open and honest about your thoughts, feelings and symptoms. But also remember that no-one has the right to demand information that you're not comfortable sharing, and you're not obliged to be open about things you don't want to be. Do it on your terms..😉 Do pop back and let me know the web address when it's up and running so that I can take a look 😊 xx

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