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Psychosocial Impact of Narcolepsy on CWN and Parents—Part 2

Psychosocial Impact of Narcolepsy on CWN and Parents—Part 2

Way back, when Mathilda began displaying the initial symptoms of Narcolepsy I remember saying to her doctor that whatever was wrong with her was a. Neurological and b. A 24-hour disorder. What I didn't know was just how some of those symptoms (cataplexy, ataxia, incontinence, hallucinations and others) would be obscured by the dramatic change in her personality--her complex and often shocking behavior. As parents we were reeling, as a three year old she was imploding.

 
Pre and post nap are the hardest times of the day for a CWN.
Pre and post nap are the hardest times of the day for a CWN.
 

I say this as a parent to a CWN--not as a Narcoleptic and certainly not a a psychologist or an authority on behavioral disorders. I can only comment on what's like to to be on the receiving end of meltdown after meltdown, on witnessing a child who sort of holds it together in public but when home (or on the way home) lets it all hang out. Then, too tired to walk from the car to the house, and too heavy to be carried, falls and cuts her foot getting in the front door.

I don't really know what it's like to feel as Mathilda does, chronically exhausted beyond manageable limits, pain in her limbs, and an overwhelming sense of not being able to cope, but I do know what it's like to try and placate a child who feels so wretched, that by the age of five they talk about wanting to die. I also know what it is to try and deal with the fall out. Mathilda has a brother and a sister. They suffer too--daily.

When my CWN becomes unreachable and the psychosocial impact of Narcolepsy makes me feel like I'm drowning in parental failure, all her other symptoms take a back seat.

I can deal with Cataplexy--keeping Mathilda safe when she's floppy and the dishwasher is open. Or when she tries ballet in the lounge at 7 pm and falls to the floor in joy.

I can hold her through the night when she's hallucinating, pre-Xyrem.

And I can find a safe place for her to sleep when we're out almost anywhere.

Suddenly needing to shut down is problematic for CWN. Not unlike the toddler years when you urgently need to find a toilet, excursions are always limited by walking tolerance and the immediate need to find a safe place to crash. This picture was taken outside an ice-cream parlor in San Fransisco. The wait line proved too long.
Suddenly needing to shut down is problematic for CWN. Not unlike the toddler years when you urgently need to find a toilet, excursions are always limited by walking tolerance and the immediate need to find a safe place to crash. This picture was taken outside an ice-cream parlor in San Fransisco. The wait line proved too long.

But it's the psychological challenges that remain possibly the most difficult aspect of the condition for both the sufferer and the carer.

There's very little I can do to communicate what's going to those around us. It's embarrassing.

We're operating well outside the normal parenting parameters, which is isolating and goes a long to way to explain why the Narcolepsy support groups on social media have become a unique support system.

More important than my immediate frustration is the fact that how I respond to her, how we coach her self control will impact on almost every aspect of her adult life. Will navigating Narcolepsy as a young child mis-shape her character? And to what extent?

The Professor and I have talked this through, over and over, told the other that we are doing our best given the circumstances and above all remained consistent when it comes to dealing with her extreme anger and implosions. We try and present a united front as though we have the terrible twos on our hands all over again, only it's worse--because she'll be nine next week and there's no sign of her growing out of it. What we perhaps need to to do is take the long term view and parent in such as away that will enable Mathilda to live outside the home as an adult, maintain relationships and thrive in both her personal and professional life. These are the desires we have for her but how do we achieve that?  Is consistently solid parenting enough? Is any of this realistic?

 
Too tired to walk and the Professor steps in. His back doesn't love it though.
Too tired to walk and the Professor steps in. His back doesn't love it though.
 

I have asked Mathilda on many occasions what would help her when she wakes up from a nap, what would offset her screaming and frequent self-harming. All she says is that nothing helps, that there's really nothing we can do to ease those thirty or so minutes. Sometimes she will be held, sometimes she won't. Sometimes she wants to stay with me, sometimes she storms off to her room. If there's friend with us, she may rally, but it all depends, on I don't know what.

We have discussed the word placate. I've explained how we try and placate/soothe her, offer her anything she might need to feel better pre and post-nap cuddles, food, leg rubs, a drink... anything to ease the distress of waking from a narcoleptic daytime nap. I'm afraid that what I have on my hands is what everyone sees, namely, a difficult child who is impossible to please--that I'm failing her because I can't help her.

I have even talked her through the impact of her behavior on others, not just her family, but what was acceptable with her peers at 8, won't wash as a pre-teen. Her friends aren't stupid.

 
Mathilda dresses up as St. Rita on All Saint's day-- the patron saint of the impossible. Post- nap she was able to recite a few lines in front of her peers at school. I suspect she chose to be this saint for a reason.
Mathilda dresses up as St. Rita on All Saint's day-- the patron saint of the impossible. Post- nap she was able to recite a few lines in front of her peers at school. I suspect she chose to be this saint for a reason.
 

But perhaps this is the view of someone who has no real idea of what it feels like to have a broken sleep center--a dysfunctional hypothalamus. How can we really get what that feels like?

 My friend Julea who has Narcolepsy recently told me that it is helpful to think of it like this: that after a daytime nap you feel as though you haven't slept for 72 hours.

She said: "Your tired is not the same as my tired." 

And I think that's helpful. Our non-Narcolepsy tired is not the same. Nowhere near it. Even as a parent who cares for narcoleptic and is up 4 times a night ... my tired is not her tired.

Understanding this is the first step we can take in caring for our CWN. So that however much they are fighting those around them, we as parents have enough reserve to reach the deeply distressed child--even if deeply exhausted ourselves.

And I can't help thinking that's no small thing.

Siblings Celebrated—A Reflection on the Wider Cost of Chronic Illness

Siblings Celebrated—A Reflection on the Wider Cost of Chronic Illness

The Psychosocial Impact of Narcolepsy on Children and Parents—Introduction

The Psychosocial Impact of Narcolepsy on Children and Parents—Introduction