Being diagnosed with Functional Neurological Disorder is fucking hard.
I quit my job over 6 months ago because I just couldn’t do it anymore. Over the past half a year I’ve gone from being shattered and having shaky hands to being in a wheelchair, not being able to plan two steps ahead, having multitasking as a thing of the past, not being able to feel my legs, wetting myself daily, still having tremulous hands, easily sleeping up to 15 hours a day and being knackered and in pain every moment of every day.
Getting diagnosed with FND isn’t ever easy, but to be honest, I’ve been a guinea pig for the Nottingham NHS and it’s the sadly best they can offer me. I don’t blame to NHS for anything, it’s amazing! But I’ve been on and off various medications, made my GP my second home and seen multiple specialists – all of whom have seen me, have been worried until the point when my results came back as “clear”, ”normal” or “healthy” then discharged me no matter what state I’ve been in.
Every doctor I have seen has been sure it’s been something, from anxiety to essential tremors through to a compressed spine. Then at the end say “nothing is physically wrong so it’s functional and we can’t do anything, you need to go back to your GP”.
That’s the polite answer – I had a neurologist say “put your wheelchair back on eBay” because basically it’s all in your head.
Although everyone says it’s FND in the end, every time a new doctor sees me, I let myself be convinced that I might have something else:
• something that surgery can fix,
• something that will explain all my symptoms,
• something that is physical and people will understand,
• something that I can I say a few words about rather than having to explain it every time,
• something that when I tweet the name of, a random keyboard conspiracy theorist won’t reply and tell me it’s made up. It’s all a lie. ‘They’ ignore women’s health and it’s definitely something else!
Somehow I end up strangely disappointed when I’m told that my spine is in perfect condition or I don’t have any holes in my brain. It’s a really weird feeling being upset that your body is medically perfect when you have wet yourself in public, can’t shower without help and have to be wheeled around to take the dog for a walk. It’s amazing that everything is in working order and I’m so pleased it is, but it’s not working no matter what “order” it’s in.
Having a functional illness is hard but the process to getting help, being diagnosed and having to prove over and over again my limitations and my disabilities is harder.
I’m back to the doctors again tomorrow and I’m hoping by the end of the day I’ll have another specialist ticked off, agreeing that it’s Functional Neurological Disorder. There isn’t a specialist in my area so I have to work my way through the list proving that I’m “healthy” to be referred to a FND specialist to say yes I’m ill and here is how I can help. This process on average takes about 2 years I’m told, so I guess I’m a quarter of the way through. At the end of it, there won’t be meds or a cure, just hard work. Which trust me, I’ll be used to by then!
As always,✌️&❤️ Eva xx
Wheely Good Time 
I also have FND and I hate the stigma around it! It is such a life changing condition and there is such little support or even knowledge from the medical community. I hope you can make it to an FND specialists soon or even to a neuro physical therapist. I saw a neuro PT, and while she had never heard of FND I asked her to help me retrain my brain to walk normally again and she did it. Good luck in your journey!
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Guess what folks, FND is real, it is up there with M.S. and Parkinson’s, but hardly anyone knows about it! And it just doesn’t affect women, as I can testify to. I was diagnosed late last year, 2018. I say diagnosed, in actual fact I was told what I had and given an A4 piece of headed paper with a few “helpful websites” on it. That’s what we are up against. More awareness is urgently needed and saying things like, “…it’s all in your head” or “…you’ll maybe feel better tomorrow/soon/in a few days…” should soon be things of the past. Going from a fairly active person, working, driving, walking the dog, going out with family and friends to becoming reliant on these friends to do practically everything for you is shattering. We get by because we have found that we are not as alone as we thought. Through social media, many groups and friendships have been formed as well as a supportive network of fellow sufferers all at different stages of FND. To all these people, I thank you. Each of you makes a difference to us all.
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