I developed FND symptoms around about the mid 2010’s. I can’t really be exact as the symptoms slowly developed apart from my seizures which began in 2013. I had Post Viral Fatigue Syndrome too but there was no improvement with that (later I found out I had M.E) but for a long time I lived with undiagnosed symptoms which I found really difficult. It wasn’t until I came under the came of one of only a few specialist FND neurologists in the UK in 2017 that I got answers, a diagnosis and care. I was very lucky to be under the care of Professor Mark Edwards who had knowledge and understanding of FND that all my symptoms were all very real and he got me the care I needed.

Functional Neurological Disorder, or FND for short. One of the big misconceptions is that FND is a psychological illness but it’s actually a very real neurological physical condition. It’s not well talked about and it’s often misunderstood especially by medical professionals.

FND is a problem with how the brain communicates with the body which results in a wide range of symptoms. Its experienced differently by each person with the condition.

For for FND causes problems such as:

Non-epileptic seizures
Involuntary movements (myoclonic jerks)
Muscle weakness
Dystonia
Muscle spasms
Muscle weakness
Tremors
Gait and mobility problems
Limb weakness especially in my legs
Limited hand function
Speech problems
Bladder and bowel issues
Visual changes
Sleep disturbances
Nerve pain and other symptoms with my nerves
Brain fog, memory loss and difficulty concentrating

Developing FND really has changed my life. It affects me every single day. Some symptoms can be managed with medication, medical devices, managing what triggers my symptoms and by using mobility aids like my wheelchair. Other symptoms I just have to learn to live with and manage them as best I can. I find having FND a very unpredictable disability to have. You can be okay one moment and the next I’m having a cluster of myoclonic jerks when I’m trying to brush my teeth or I could be mid conversation and my speech goes. I can’t go to bed and predict what the next day will be like.

In all honesty I find it hard to talk about having FND because of how misunderstood it is and because of negative experiences from medical professionals such as them thinking that I’m feigning my symptoms. I’ve experienced a lot of medical gaslighting because of this and as a result experience medical trauma so hospitals aren’t a great place for me. I often don’t say that I have FND in medical appointments in case my symptoms are trivialised and put down as ‘all in my head’ and I don’t get the real medical care I need. I think it goes in hand with how M.E. isn’t well understood either so often I feel left not getting the care I need because I have FND and M.E.

There are things I’m unable to do because of my safety too or I need someone to be with me. Though I live independently I often feel unsafe because of my FND symptoms. Regularly falling, injuring myself, having different kinds of seizures. I have to adapt a lot too to keep me safe. Sometimes it can feel a little restrictive. There are also a lot of things that aren’t safe for me to do or I’m not allowed to do like drive.

There’s this quote I love though:

“There are things that are possible; things that are impossible, but I think that within my restrictions anything is possible.”

Despite how restrictive my life with FND is I’ve learnt what triggers some of my symptoms so I can better manage and reduce them now. I’ve also learnt what helps my symptoms too. I have my own home and I manage to live independently with the support of my care team. I also have my fabulous GTM wheelchair and my Batec which has given me freedom and independence and better quality of life. My Batec really helps my mental health and is my version of a car to take me places. I’ve slowly managed to build a life for myself. When I first developed FND I really couldn’t have imagined myself where I am now.

Functional Neurological Disorder

FND links:

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