Bed Life and Beyond

Functional Neurological Disorder (FND) is complex and poorly understood, even among most doctors. There’s no quick fix for it. Sometimes a multidisciplinary team and rehab can be beneficial. Routine medical testing is usually normal, though there are particular signs of FND which experts look for to help confirm the diagnosis.

Symptoms can include limb weakness, paralysis, blindness, deafness, seizures, gait disorders, pain, fatigue, abnormal movements and tremors. Speech, swallowing and continence issues can be evident too.

Outcomes vary. Many people with FND remain symptomatic and disabled. Those who get treatment quickly after onset of symptoms, have a good experience of diagnosis and treatment, and have few comorbidities (other things wrong with their mental or physical health), tend to have better outcomes. Children tend to have better outcomes too.

The information above is almost all from FND Australia Support Services Inc., Australia’s first and only charity for FND. Fndaus.org.au is a great website for information about FND. It is run by my Occupational Therapist who has a PhD in FND.

When I was 19, in 1994, I had a mole on my arm which turned out to be malignant melanoma. I had it removed under local anaesthetic. No problems. Then I had the second surgery, a major one, where they cut a huge part of my upper arm out around where the mole had been. The surgery went fine and no further cancer was found. I didn’t know that at first. A nurse in the ward I was put on to recover, was screaming at my friends coming to see me. She was really abusive. I felt really vulnerable and unprotected. But I was getting through, just waiting to heal and go home. Then I noticed it was getting harder and harder to move. I lost all mobility except I could still talk and breathe and blink. I couldn’t swallow but I could threw up attempting to swallow. ‘Could’ because at least it was moving. I got dehydrated so I was moved to a different ward where I could be put on an IV. I got bedsores on the backs of my heels because I couldn’t move off them. They hurt terribly and looked dark purply-red. Then I gradually regained the ability to swallow. And I worked really hard and luckily gradually learned to walk again, especially when I heard a consultant psychiatrist say he wanted to do research on me. I got mobile enough to go home, and kept working on it so eventually I was walking and moving well again. No one told me what the paralysis episode had been. No one even suggested what it had been. It was my first significant episode of FND.

I did notice over the next 27 years that my legs would stop working regularly. I’d sit down and not be able to get up for up to a couple hours at the most, usually shorter, or lie down and not be able to get up for up to that long, usually shorter. I forgot about the paralysis incident when I was 19 and assumed it was depression because I used to get depressed a lot. Doctors would look at me like I was crazy when I’d tell them my legs would get paralysed sometimes when I was depressed. Sometimes my feet wouldn’t lift when I was walking and I’d trip, then walk like a duck, and have to call my mother to come pick me up because I couldn’t walk home from up the street. This was even before mobile/ cell phones. I’d have to ask shop attendants if I could use their shop phone. Because no one had told me I had FND, I just blamed it on something else.

Then at the end of 2017 I took my child’s father to mediation, to try to work out more regular contact with my child, as it was difficult arranging it each visit. It was extremely stressful starting mediation. My mobility started deteriorating quickly. I wasn’t able to continue the mediation.

By April 2018 I had a two week hospital stay in which I had to start using a walker as a wheelchair. I was discharged April 17, and on the way home hired a wheelchair. I was unable to take a step anymore and my arms were getting weaker too.

I lived in a split level unit alone. The toilet was upstairs with the two bedrooms and the bathroom and laundry. So we turned the second bedroom (my daughter’s room) into a kitchenette and bedroom. I couldn’t go downstairs to my kitchen or my front door or lounge/dining room which was my art studio where I did and taught art, anymore. I had no support apart from an outreach worker visiting me once every ten weeks.

The stench of my rubbish got unbearable. I triple bagged it and put the bags in my bathtub and shut the bathroom door to keep the smell down. I had two cats, so their kitty litter and cat food cans were in the rubbish. I couldn’t even throw the garbage bags out the back door, as I fed crows and they’d just open the bags and scatter the rubbish everywhere.

I had no food security because I couldn’t even have groceries delivered to me. I couldn’t get to the front door to let the food delivery person in.

A friend, Kristie, dropped by after seeing on Facebook that I was struggling. She had run my daughter’s Playgroup when my daughter was one year old. Kristie was shocked at the help I needed and didn’t have so she started coming over once a week and doing my grocery shopping for me. I didn’t have any money to pay her. I’m on the Disability Support Pension.

By about July 2018, the National Disability Insurance Scheme (NDIS), Australia’s new public disability support system outside hospital, had come in, and I was able to start paying Kristie as my first NDIS support worker. I got some other support workers after that too, and some allied health professionals, like two Occupational Therapists (one has a PhD in FND who I see by Zoom, and the other is local for our equipment), and NDIS started paying the psychologist I was seeing, etc.

For about a month in 2019 I was able to walk again. It came out of the blue and went away out of the blue again. My FND is episodic which means there’s some hope I might walk again. But the longer I’m in the wheelchair and the more my baseline of functioning declines the less realistic that hope is.

I’m grateful for the things I’m still able to do. I’m especially grateful my daughter can still visit me. And that I can use apps on my phone and occasionally do some small art. I’m glad I can still have dreams, even though they need to be realistic. I know there are many people suffering more than me. And my depression isn’t as bad as it used to be, which I’m hugely grateful for.

I’ve had two kinetic (strong convulsion) non-epileptic seizures when I’ve gotten really overloaded. And I’ve pissed myself, literally, a few times, and crapped myself, literally, twice. It’s memorable! My psychologist thinks every adult should piss themselves at least once in their life; it’s a humbling experience.

In my own understanding, FND is a condition of brain overload. When people have FND, whatever causes their brain to get overloaded (lights, or sounds, or stress, or overdoing things, or lots of questions being asked to them in a row, or tiredness, etc) will cause a flare up of their neurological symptoms. If their triggers are not managed somehow, their FND symptoms will increase and their triggers will diversify. When their triggers are well managed their symptoms are generally less.

People with a background of trauma are more likely to develop FND than those without it, but sometimes people with no trauma history at all develop FND. A number of people develop FND straight after a general anaesthetic but again the vast majority don’t, and subsequent general anaesthetics are usually non-eventful. In my case I’ve got a lot of trauma in my background, I had a general anaesthetic right before developing my first episode of FND, and additional general anaesthetics have been no problem at all for me.

This is my FND story. What’s yours, if you’ve got FND?