Navigating Cataplexy, Grief, and a Broken System

Hi 😊, I'm Amy from the UK (United Kingdom), and my story has been ongoing for the past 7 years now. Unfortunately, upon being diagnosed with narcolepsy type 1, I also experienced losing my dad (my rock) to melanoma in less than 8 weeks, and my mum suffering 2 strokes due to the stress. Needless to say, I didn't know if I was coming or going, and I am still struggling to this day with extreme night terrors and hypnagogic hallucinations that manifest around the death of my dad, or him in general.

Grief caused my cataplexy attacks

I experienced one of my worst cataplexy attacks when in the hospital watching my dad die. I remember being told we were going to lose him within days.  I was instantly fighting to breathe, and was slipping in and out of continuous cataplexy attacks for over 2 and a half hours. It was horrific, scary, overwhelming, and to even speak about to this day brings an instant heaviness across my chest.

Lack of awareness of narcoplepsy and cataplexy

These past 7 years have been a true hell.

The UK is unfortunately very behind with knowledge and support revolving narcolepsy and cataplexy. I find I have to educate the NHS (National Health Service) staff and advocate for myself due to the lack of awareness here. This also means I get very little support in order to live, although I became a workplace hazard and unsafe, with accidents and brain fog affecting my cognitive ability to manage my store and staff correctly and efficiently.

Denied disability support

I find because I 'look' normal and this disability is invisible.

The arrogance of people can be frustrating even to this day, including the ignorance I have received from supposedly UK's "health care" systems that are supposed to be there to help people affected by their daily disability. It is a joke. PIP (personal independent payment) is more like an army interrogation process, where I was shown such a lack of knowledge of my condition and arrogance of attitude. Their determination revolving my condition included, for example, that because I am "able" to wash myself, I am seen as able bodied.

Define my ability to wash myself

This has NO regard for the facts. I no longer take baths as I have nearly drowned on different occasions due to falling into a micro sleep as the heat affects my muscle tone and sleepiness. There is NO acknowledgement that I will suffer brain fog or slip into an automatic behavior, such as causing me to put body wash on my hair and shampoo my body, or once I've shampooed and conditioned my hair, I go to wash my body and put the bodywash in my hair!

This triggers frustration and instantly exhausts me where I will sit down in the shower and can be sat staring for over an hour or until my mum comes upstairs and encourages me to get out.

None of these factors are considered, none of the time and effort this takes me is considered, As long as I am 'able' to wash myself I am overlooked.

Same goes for preparing food, traveling from A to B...the criteria used in PIP assessments is completely biased and is uneducated and discriminatory towards people with this condition. These things still get me angry as there is nothing I can do about their ignorance.

Anger and grief over what I have lost

It took me a long time to start working on my aggression towards not being able to do the things I have always done, up until 28 years old...This was  in addition to what I felt mourning the loss of my dad and the heartache watching my mum completely lost and grieving each day.

Mourning myself

I also was mourning the loss of myself. I went from being vibrant, positive, full of energy, and a glass-half-full kind of girl to someone trapped in a body that looked the same, but who I no longer recognized. It is a hard pill to swallow when I am able to remember everything I used to be able to do and achieve physically and mentally, and now to be stuck with this condition that has ruined my life.

Finding support from far away

I have had more support from sleep disorder associations in the USA and Canada than my own country or from my neurologist. I find my family are also quite ignorant about the invisible struggles that is my life and being left to cope alongside my mum who is in turn also left to cope with her own fatigue, memory loss (due to her strokes) and with trying to support me the best she can. I have 2 brothers, one that lives 5 minutes away and yet quite honestly feel like an only child.

Did I also mention I have combined ADHD...which just means my body and mind are constantly at each other. It is truly exhausting.

Determined despite my disability

Finishing with a positive: I have 2 French Bulldogs who are my world and without them I don't know where I would be and also a mum who does more than she should have to for her 35 year old daughter!

I am still a stubborn mule, as I always have been, determined to not have to rely on a broken benefit system for income or support. Because of this, I have been working for the past 2-3 years, setting up my small business of creating French Bulldog Collections in forms of different epoxy resin sculptures. I have moved onto casting and carving different breeds now to, reaching across to all parts of the USA and other beautiful countries via Etsy. This will be my focus for the foreseeable and keep me grounded hopefully. It is hard and some days as I just have to rest. But I cannot just sit and do nothing for the rest of my life, so we shall see how it goes!

Support in surprising places

I am thankful for my wonderful customers who support my business and my health, more than anyone else in my life (apart from my mum of course). These are the people I have met who kept open communication with me through deciding to create these Collections of art. They have been amazing and so kind and, honestly, the majority of these people are from the USA.

I am thankful I came across your support groups and different associations via Instagram, etc., because it has been nice to feel less lonely when struggling with the daily symptoms that narcolepsy and cataplexy, as well as ADHD, can bring.

So "how long is this going to take??" Probably the rest of my life to accept and find a peace with the body I now have to adjust to. To stop feeling guilty about not being able to 'fit' into other peoples plans who don't suffer this condition and who don't adjust their lives for you.

With time it will become easier and the more knowledge you/I have and help received with coping mechanisms and talk therapy. I am optimistic that I will find a balance I can cope with that will allow me to feel more in control of myself and my abilities once again.

Take care,

x Amy

Read more from Amy about her unusual cataplexy trigger: cold water.