Bed Life and Beyond

Reducing things which overload my brain definitely helps my Functional Neurological Disorder (FND).

The things I’ve worked out which overload my brain are:

• stress

• physical and mental tiredness (my symptoms deteriorate predictably as I get more tired, and if I overdo things I’ll be completely paralysed again apart from blinking and breathing)

• being unable to regulate my temperature (which is also a symptom of my FND)

• being asked lots of questions in a row, especially being asked verbally

• repetitive movement of limbs (physio 3x caused almost immediate paralysis which I’m still dealing with aftereffects from almost a decade later)

• disempowerment and people clearly being malevolent towards me, knowingly causing harm, gaslighting or being toxic

• unexpected disappointment

• taking away valued, trusted, closest relationships to me

• sunlight shining directly into my eyes or peripheral vision- even a reflection of sunlight (bouncing off cars or windows, etc)

• talking with someone when I can’t see their mouths and faces to help process speech- captions also help

• sudden loud noises, like loud bangs, sudden shouts, a door slamming, an unexpected knock on a door- all worse if they’re behind me

• particular sounds, (especially loud ones, and sounds like cymbals, trombones, trumpets, plastic bags, boxes or styrofoam scratching together, sometimes voices particularly certain voices, vacuum cleaners, leaf blowers, lawnmowers, cars revving)

• listening to music, especially if it’s very close to me, if I wasn’t familiar with it before I first significantly deteriorated with FND, and if it has more instruments than piano or cello in it

When I get overloaded a number of neurological symptoms can happen. Generally my mobility deteriorates, my speech immediately starts deteriorating, even mid-sentence, and my cognitive abilities malfunction to the point I can’t understand what people are saying to me, it sounds like they’re speaking a language I don’t understand, and I can barely say anything back to them, or it’s slurred or gobbledygook what I get out. Occasionally I’ll have a seizure or an episode of incontinence (bladder and/or bowel), or my functioning will deteriorate beyond what a sleep can fix, and I might develop a new or revisited symptom like difficulty or inability to hold my head up again.

What do I need to do when I realise I’m getting overloaded? Pull away from the overload as fast as possible to help prevent my flare continuing, new symptoms starting, my baseline of functioning deteriorating, or another neurological symptom becoming a permanent disability.

My first thing to do is to try to identify the trigger causing my overload which is flaring up my symptoms. If I can identify the thing causing the overload I can take steps to move away from it. Some causes of neurological overload can be very hard to spot, like hormonal imbalances or an attack on the immune system. Not everyone can identify what’s causing their overload, or it might take years to do this.

My second thing to do is to move away from the thing causing my overload. It might take some trial and error in these two steps, identifying what’s causing the overload and moving away from it.

My third thing to do is rest. I need immediate sleep to help best recover from overload. Otherwise I cannot continue to function. So I must drop any plans I had and go to sleep instead. My schedule must be flexible enough to do this. It means I miss out on things sometimes. And I avoid further permanent disabilities as much as possible.

If you keep a simple key point journal of what’s been happening (especially changes or stresses) and what symptoms you’ve had, this can sometimes be useful to help work out what’s triggering your overload. You might want to write the journal once your symptom flare has settled, not while it’s at its peak! Trust your gut feelings about what has changed to cause your new or intensified symptoms. Trust what your body’s telling you. It’s communicating something to you.

I purposely don’t do things I know will overload me before scheduled appointments, so I have my best chance of making those appointments.

I do things like have earplugs within reach for times there are noises I can’t avoid. I whisper if my own voice is hurting me and causing me overload. I have someone else train my new support workers coming in to care for me so I don’t have to answer lots of questions in a row, or overdo my energy output. I avoid things like physio therapy where repetitive movements are done. I get as much rest as I can when things are particularly stressful around me. I have a team of support around me helping me deal with things practically, in a way which is safe and suitable for my individual disability needs.

I talk with a forensic (highly trained) psychologist every week on Zoom (because I can’t get there to see him), and I can email him any time too. This support is crucial for me to deal with my stress levels with support workers and the whole public disability support system we use to access them through (which is exceedingly stressful but essential). He helps my symptoms be much less through therapy, but it’s also a neurological disorder so he can’t fix it. He supports me with an additional dissociative disorder I live with too.

I’m aware very different approaches can help different people. Often with FND you’ll hear someone say you must try a particular thing, because that has really helped them. With FND, each person requires a tailored approach, and each person’s initial treatment and ongoing maintenance will be individually tailored to what works best for them and their specific FND symptoms, the parts of their brain impaired by FND, how advanced their symptoms are, how long they had symptoms before treatment, what other diagnoses they have which are intersectional with their FND, etc.

I know some people get real benefit from an exercise regimen, and others deteriorate quickly with one. I deteriorated rapidly trying to move every ten minutes and less frequently, in hospital with allied health supports supporting me in that program. That’s why I now don’t do any repetitious exercise, but I focus on activity-based movement instead.

There are several functional disorders under the FND umbrella, like Functional Movement Disorder, Functional Cognitive Disorder, Functional Speech Disorder, etc. These are all different kinds of Functional Neurological Disorder.

My Occupational Therapist who has a PhD in FND said people living with FND often benefit from doing sensory activities. That is, any activities which engage any of the five senses- touch, sound, smell, sight or hearing. These activities help rewire the brain using neuroplasticity to reduce the negative effects of FND. They can sometimes help regain functions lost to FND, over time, or help prevent more functions being lost. Some examples of sensory activities could be visualising your happy place or something you love, blowing bubbles, playing in water, playing with clay, spending time with animals, drawing or painting, embroidery, playing a musical instrument, working with gadgets, crocheting or knitting, fidget toys, gardening, anything with scented oils, photography, dancing or movement activities, yoga, listening to music, cuddly toys, woodwork, paper crafting, sensory boxes, snuggly or weighted blankets, kinetic sand, sewing, Ooebleck/slime, singing bowls, puzzles, sound jars, shaving cream, poppets, hot water bottles, sand play, brushing hair, therapy putty, felting, etc. Can you think of any more?

I find it helpful, as often as I think of it, to take one (metaphorical) step away from something causing me overload, and one (metaphorical) step towards something soothing, fun, and/or distracting. This really helps my brain reduce neurological overload. It can be done alongside whatever other approach you’re taking with your FND treatment or management. By ‘distracting’ I don’t mean tricking yourself. I mean reminding your brain you have parts of your brain which still function well. I mean shifting the focus from your brain’s non-functional areas to a functional area.

If you live with FND, or chronic illness, what things have you found help you personally?