World Narcolepsy Day 2021

World Narcolepsy Day is only 11 days away, September 22nd.

Narcolepsy is a Rare Disease that affects 1 in 2,000 In the US or 3 million worldwide! It is a neurological disorder that affects the brain’s ability to control the sleep AND wake cycles, and there is no cure.

Excessive Daytime Sleepiness is the most common symptom, it feels like a wave of exhaustion and although I try to fight against it, it is a battle that I am not able to win. I used to nap whenever and wherever I could, and for as long as I could prior to being diagnosed. I now stick to a 20 minute nap, and due to being medicated, I generally only need to do this once a day.

I used to start my day feeling as if I hadn’t slept for 48 hours, can you imagine your cognitive abilities working under that exhaustion? I went undiagnosed and therefore untreated for 40 years, and eventually my narcolepsy became so debilitating that I was no longer able to get up and go to work. It ruined me financially and cost me a career that I loved!

Please don’t ignore the signs, if you are having sleep issues seek help. The longer you go untreated the worse it gets, and as narcolepsy is not considered a disability in Australia and as such, will preclude many from obtaining support through Centrelink and the NDIS, the ability to support yourself will become extremely difficult as you get older. People with narcolepsy have a significantly increased risk of death or serious injury resulting from motor-vehicle or job-related accidents, and they must take care to avoid situations where such accidents might occur, which adds to the difficulty of finding suitable employment. If not properly diagnosed and treated, narcolepsy can have a devastating impact on the life of the affected individual, causing social, educational, psychological, and financial difficulties. I believe that it is time that our Federal Government looked at the severity of narcolepsy and make the necessary changes for narcolepsy to be a recognised Disability in Australia. What do you think? #raiseawareness #narcolepsy #disability #nocure 



Hypnagogic Hallucinations

The festive season is now behind us and I am sure that I am not the only one glad to have seen 2020 come to an end. The pandemic has had a devastating impact globally, but it has also had some positive outcomes especially where receiving health care is concerned. The introduction of phone appointments with my sleep specialist has been a very welcomed change for me as it meant that I did not have the stress of making it to an appointment on time which is something that anyone who has narcolepsy can relate to.

One of the reported symptoms of Covid-19 has been extreme fatigue, and it is one symptom that some who have recovered from the virus are still battling with, which raises the question as to whether Covid-19 can trigger narcolepsy in those who have the genetic markers for this disorder. An increase in people who are experiencing this level of fatigue is helping to raise awareness of this rare disorder, and an increase in narcolepsy cases (not that I would wish this on anybody) it will hopefully lead to more research and perhaps even lead to new treatment options which are currently extremely limited here in Australia. Here is a link to current information regarding the potential risk factor for chronic neurological disorders Parkinson’s Disease, Multiple Sclerosis and Narcolepsy (type 1) in patients with COVID-19: COVID-19: dealing with a potential risk factor for chronic neurological disorders

Hypnagogic hallucinations which are a common occurrence among those who have narcolepsy, have thankfully been few and far between since starting treatment to help me to have some restorative sleep. Sodium Oxybate is a central nervous system depressant. The precise way in which it works is not known, but it is thought to attach to receptor molecules on the surface of some cells in the brain. Misuse of this medicine can cause breathing problems, seizure, loss of consciousness, or death, consequently I take the warnings regarding avoiding alcohol very seriously.

This was my first New Years Eve since starting this treatment and as I was going to an event that included alcohol, I made the decision to have a few drinks instead of taking my nighttime medication. It is now that I really understand just how much I have improved by taking this, not only the fact that I can wake up in the morning, but the fact that I have had very minimal hypnagogic hallucinations since taking it. I honestly do not recall the last time that I had seen a spider suspended on its web right above my face and thankfully they do not scare me, this one was shooting his web at my face which I could feel on my face, in a very spider man like manner, I kept breaking his every attempt to cover my face with his webs while trying to go to sleep.

Being aware of my condition and having answers for these hallucinations has made it easier for me as I am now able to rationalize the fact that it is not real rather than lay in bed frozen with fear. The other consequence of my choice was not waking up until around lunch time and feeling exhausted when I did due to my REM not being suppressed, my day was a battle of excessive sleepiness and involuntary naps, so I will be thinking long and hard before choosing to celebrate with alcohol any time soon that is for sure!

I hope that this year will see me making more progress towards a new normal and look forward to seeing the world recover from the impact that 2020 had on us all.

That is all from me for now, thanks for reading #waking-up-tired.


Fatigue and the Festive Season

The festive season is exhausting for people as it is, so imagine how difficult it is for someone who has undiagnosed and therefore un-treated narcolepsy, a full-time job and 4 children! I always hosted Christmas lunch and to be honest I found having the family over for Christmas was a lot easier than having to go visit family on the day. Visiting family with food, kids and presents, having to tell the kids to take 1 new toy only as it was too difficult to watch where they left it amongst all of the new toys and discarded gift wrapping.

Due to the extreme sleepiness, a lot of the memories that I should have of those days are nonexistent which is sad, but I was relieved to find out once diagnosed that I have a very good reason for not remembering, at one point I feared dementia which to me would be a terrible way to live not knowing who the strange faces belonged to.

I fondly remember my eldest son Dan waking up his younger siblings and bringing them all in to my bedroom to wake me up by telling me that Santa had been, often followed by the next eldest Brad declaring that he had heard the reindeers’ on our tin roof during the night! I also remember the fact that I had been up basically all night wrapping presents and cooking Christmas food, and that I had possibly only managed to get to bed an hour or so before being awoken by excited voices.

The lost memories of my children I grieve more than anything, possibly due to having had my eldest pass at 16, he loved Christmas and his loss 2 weeks before it has ruined this day for me ever since. I am getting better at doing Christmas; I even put my tree up this year despite not having any children left at home. I suspect that the pending arrival of my very first grandchild (a boy) in early February is helping me to get the spirit back, I can’t wait to see this little man’s face every Christmas from the next onwards!

Season’s Greetings to all of my #waking-up-tired readers, may you all have a safe and happy New Year!


Don’t Give Up

It saddens me to read younger narcoleptics posts in social media at times as I find that many are questioning their future as though having this chronic disorder is some kind of death sentence. Yes receiving an education is going to be a battle, I slept through most of my high school years, but it doesn’t mean that it isn’t achievable, especially if you are diagnosed at a younger age and accommodations are made to help you. With a combination of awareness, support, medication, and practicing good sleep hygiene including naps, you can complete your education and even continue to do further education if your career choice requires this.

One thing that stood out to me when I returned to study as an adult was how much easier it was attending subjects of interest delivered in an adult environment, one that can be tailored to suit your needs. I completed half of my IT qualifications by attending evening classes. In fact I had only started going to educate myself in basic computing skills to help to increase my employment options and it was only after I started to complete these module’s and began to receive my certificates, that I decided to continue with the classes which resulted in my gaining a Certificate 3 in IT.

When I got my first lot of results back my heart sank momentarily due to seeing my grades C’s and D’s, this was due to the fact that when I was last at school it was the mid 80s and a C was a low pass and a D was a fail, of course now days a C is actually a credit and a D is a distinction! Receiving all C’s and D’s was enough to encourage me to continue to study a field that I never would have contemplated previously as I had no idea that I would actually be good in an IT environment.

After successfully completing my Cert 3, I then began to look for work. It was during this time that I noticed an opportunity to further this education by attending another adult learning facility that was going to be running a Cert 4 in IT Network Management. I attended the information session, sat an exam this was followed by an interview after which I was offered a scholarship to complete this qualification. I was the second eldest in the class and the only female to complete the entire course, I was also given the honor of being chosen to write and deliver the graduating speech on behalf of the class during the graduating ceremony.

I did all of this with 4 small children, undiagnosed narcolepsy (so no medication or accommodation’s) and went on to secure a permanent full time position that lasted for 15 years within the Australian Federal Government, starting as a APS 3 and through hard work and determination after 3 years, I managed to win a permanent APS 5 position with the Department of Human Services.

Please make the most of having an earlier diagnosis than I did, and most importantly Do Not Give Up!

That’s all from me for now, thanks for reading.



Grief is Exhausting

Today marks the 13th year of the unexpected passing of my eldest child Daniel. Daniel was a perfectly healthy 16 year old teenage boy; there was no reason for me to suspect that the 10th of December 2007 would be the last time that I would see him alive. On this day 13 years ago I joined a club that I never applied to become a member of, I became a bereaved parent. A bereaved parent has no official title, when a partner dies you become a widow or widower, when a child loses both parents they become an orphan, but nobody has given us bereaved parents an official title, perhaps because there are no words to sum up the horrific reality of such a devastating loss.

Having survived Daniel’s death has made me stronger, harder, and in all honesty a completely different person than the one I was previously. I also believe that this tragedy was the catalyst to the decline of my brain as I knew it. My brain had suffered so much on top of living life, since childhood, of being constantly sleep deprived. The grief that parents go through is exhausting, the first year is mostly a haze of muddled memories, I barely slept, and in fact I barely functioned at all.

My work was very supportive during this time, and they made more allowances than I could have possibly expected. As my Area Manager at the time explained to me, I was the first staff member that she had go through this and she simply had nothing to compare to as to how to approach my grieving and return to work. When I returned I found it very difficult to arrive on time or stay all day, my mind wasn’t focused at all and everything seemed to be so much harder to do. I was able to arrange to work from an office that was closer to home for a while, but eventually I had to return to my team who were located in the city. I went back to the job that I had always loved doing but I couldn’t cope with the travel and the fact that I was petrified that something might happen to my other children every time I wasn’t with them, it was horrible and I didn’t know how to make it better. Eventually I made the decision to relocate permanently to the office that was closer to home which meant changing roles and thankfully the Manager at the office at that time was able to create a position so that I didn’t have to drop down in level.

After the demyelinating attack on my brain in 2013, right up to last year when I experienced for the first time in my life what it was like to wake up feeling as though I had slept (thanks to the drug trial medication) I had been grieving the loss of my brain’s ability to function as well as it always had. Since gaining extended access in May this year to the trial medication, I now find myself grieving the brain that I never got the chance to fully utilize. When I look back at all of the amazing things that I have managed to do personally and professionally whilst being undiagnosed with narcolepsy, I can’t help but wonder what life would have been like if those symptoms had never started back when I was 9 years old.

So today I find myself revisiting grief, grief from the loss of my beautiful son, and grief of the loss of the brain that I never truly got to know.

Have you experienced extreme grief? How did you cope?

Thanks for reading, until next time.


(1) The 5 Stages of Grief & Loss

The 5 stages of grief and loss are: 1. Denial and isolation; 2. Anger; 3. Bargaining; 4. Depression; 5. Acceptance. People who are grieving do not necessarily go through the stages in the same order or experience all of them.


The Phone Battery Theory

How do you explain what it is like to have Narcolepsy? This is a regular topic of conversation within social media narcolepsy forums; and one that never really seems to be answered. The fact is that it is almost impossible for anyone who doesn’t have it to be able to understand the battle. I have had all sorts of suggestions made to me by people who meant well, but what they don’t seem to understand is that without a way to replace the missing Orexin there is no cure. Sure exercise, practicing good sleep hygiene, looking closely at the foods that you eat and working out which ones make you tired and which ones don’t (I believe that many narcoleptics have great success with the Keto diet), and taking medications often helps, but there simply is no magic one cure fixes all answer.

In an attempt to explain how I feel every day, I decided adapt the Spoon Theory and use an object that everyone can relate to today which is a mobile phone battery; so here is my Phone Battery Theory that I wrote not long after being diagnosed. I have shared this a few times in the social forums but haven’t for a while, and I am more than happy for you to share this with someone who you would like to get a better understanding on how you feel. I hope that someone finds this useful, if you do please like this blog and or leave a comment, I promise to reply if you ask any questions. Thanks for reading and bye for now.

Di #Waking-Up-Tired

The Phone Battery Theory (an adaptation of the Spoon Theory)

 I woke up with 30% today because of yesterday…

You cannot see I am ill. From the outside I look fine.

I want to attempt to explain the fatigue that comes with narcolepsy.

Fatigue is not like being tired. When YOU are tired you simply take a nap and feel recharged when you wake up, or you will have an early night and feel better the next day.
I do not feel recharged when I wake up from a full night’s sleep (if I manage to get a full night), let alone feel recharged after a nap.

Let me try to explain:
My energy levels are like a phone battery that no longer fully charges nor holds its charge properly. I can sleep a whole night and still feel like I spent the entire night wide awake. Imagine your phone not charging properly. The connection between the charger and the battery keeps breaking up. You have your phone connected to the charger all night long, but upon waking you find that your phone only charged 50%, my battery in this example never exceeds 50% this is how life is for me.

There are good days and bad day’s so let’s say I am having a good day.

I have had a solid 8 hours (or so I thought) of mainly active sleep (REM), and I have just woken up. I start the day with half a battery – 50%.

I open my eyes, eventually get out of bed, go put the kettle on, then open the back door to let the dog out.
My phone battery is now at 40%, I haven’t even had breakfast yet.
I prepare some food and eat my breakfast, 35% left.
Now it is time to start the day: I shower, dress, and maybe do some light housework, for example let’s say a load of washing, or whatever I really must do today.

This takes up the rest of my battery. I am now at 1% and it’s not even lunch time yet, that’s if I had even managed to wake up by lunchtime. (This was written prior to having medication to sleep)

Let’s say I am able to take a nap to “recharge”. Many sufferers are not able to take a nap during the day because they are working or taking care of their children or doing other things away from home that prevents them from taking a nap. But let’s say it is a good day and you are able to take a nap like me.

After 2 hours (I have since learnt that a short 20 minute nap is far better, once again I wrote this not long after being diagnosed) I wake back up, first not realizing where I am or what day or time it is. When I get back to reality I do feel a little recharged (but very hazy, brain fog.)

My battery is now at 20% this is all I have left to use for the rest of day/night.
I get up – 15% energy left

I hang that load of washing out (that basket feels extremely heavy due to exhaustion) from earlier – 10% energy left

I start to prepare dinner but before I am finished my battery is empty again. Now I’m functioning on the battery warning that switches over to low power mode. My low power mode triggers micro sleep attacks similar to opening up an app on your phone that is open but not appearing to be doing anything. But I’m possibly now functioning in autopilot, appearing to an onlooker as though I’m awake, but in fact I’m doing things whilst switching from awake to sleep mode, including having conversations if there’s someone around me at the time or with myself. Warning: never tell me anything important during this phase as nothing is actually being absorbed!

I still have 3 hours left before I can go to sleep again. I am literally running on an empty battery, and things that should take a minute will take at least an hour or more to complete, if completed at all.

Finally it is time to go to bed, if I make it that far. I am exhausted. I totally overdid it today and then insomnia kicks in. Narcolepsy gives the best of worlds, extreme fatigue and inability to switch off completely to have the much needed sleep.

The next day is not such a good day. I wake up with 30% battery…most likely very late in the day. And now I have even less battery life than the day before and less time to achieve anything in on this low battery level, it could very likely be a day spent in bed sleeping and procrastinating mixed with daydreaming.

This is how life for someone with a chronic sleep disorder is on a daily basis. You can have days where you wake up with the battery charged for 70% (for those on a good medication/lifestyle mix) and you can have days that upon waking you feel like you only have 20% for that day so you take your stimulants then roll over and go back to sleep.

Overdoing it one day will take away your energy for the next day. If you know you have a big day coming up and you need energy, you can rest beforehand and make sure you are as charged as you can possibly get before starting your big day. With resting I mean having 2 or 3 complete bed rest days to try and muster up enough energy to get through the big day ahead. Sleeping for an hour or two does little to help but the overwhelming desire to sleep doesn’t give you any other option; you either give in and take that nap, or you are forced in to periods of random battery power off mode.

This is my life with Narcolepsy.


Raising Awareness Interview

On the lead up to this years World Narcolepsy Day, I was invited to be interviewed to discuss narcolepsy by Jo from my local community radio station PBAFM. Jo has a weekly program called The Kitchen Table, and every week she and her co host Pete chat with a variety of people about subjects that you might discuss with friends when sitting at the kitchen table.

This wasn’t my first interview with Jo, but it was the first time that I was able to get the audio to share with you. I found listeneing back to the interview interesting as I can hear how my speech changes as I gradually become more alert. The interview started at 1.30 which is often the time of day that I am battling through my excessive desire to sleep. Despite the time being a bit tricky for me, I was determined to go in to the station to help raise awareness, and share a part of my personal journey living with this often misunderstood rare disorder.

I must thank my wonderfully supportive partner for removing the song breaks throughout the interview for me, without his help my life would still remain more difficult than not!

I hope that you enjoy the interview, much thanks to Jo, Pete, and PBAFM for inviting me along, I look forward to joining The Kitchen Table again next year.

If you enjoy listening, please leave a comment, and don’t forget to subscribe to my blog to hear more stories about my life as a narcoleptic.

PBAFM The Kitchen Table Interview Sept 16th, 2020

Today is World Narcolepsy Day

World Narcolepsy Day

The difficulty in being diagnosed with this rare disease is why so many people go undiagnosed for many year’s. I believe that not only should doctor’s receive training in sleep disorders, teacher’s should too!

If a teacher was aware of what to look for, they may be able to help a student to get diagnosed sooner, after all, children spend more of their awake time at school than they do at home with their parents!

The Red Herring Story

As mentioned in a previous blog “The Arrival of the Red Herring”, I was given an appointment at the Lyell McEwin hospital to see a neurologist. The initial appointment was daunting as my head was still trying to process this potential MS diagnosis, and to be perfectly honest I was really scared. There are, as there are with many autoimmune diseases a few classifications of MS and none of them looked like fun to me, so in this instance I believe that I had every right to be freaking out at the possibility of how my life could be impacted by this.

The neurologist was in the out-patients clinic, and was clearly heavily booked for the day, he also had the additional stress of a medical student to provide supervision for whilst she ran the preliminary tests. His bedside manner was abrupt, and it took many years for him to eventually come across as medium warm, but we got there eventually and can now hold a few minutes of normal conversation prior to being ushered out the door for another year.

When he looked at my initial MRI, he stated that I had not only had a demyelinating attack but that I had also has some damage to my brain that would have occurred in utero, he then asked if my mother had been unwell during the pregnancy, and as I have not seen my mother for some years at this point, I was unable to confirm or deny at the appointment or since.

As I did not fit the current McDonald criteria for a MS diagnosis, I was sent to go and have other testing to see if that revealed any other MS related symptoms, that included having a spinal tap to collect fluid to check for bands in that. The very thought of a spinal tap was enough to freak me out due to having had a bad experience with a planned C section epidural in 1993, this was only adding to my stress and fear of what was to become of me.

After exhausting all tests possible the neurologist sent me to one of his colleagues for a second opinion, after reviewing all the medical evidence she classified me as high-risk clinically isolated syndrome, and thankfully to this day I have not had any further progression to change that classification.

The Red Herring caused a major detour of roughly 4 years, but had I not been seeing the neurologist I may never have been sent back for another sleep study followed by a MSLT to receive the narcolepsy diagnosis, which only occurred due to my having tried Modafinil and had as a result experienced some improvement to my excessive daytime sleepiness.

To end this post on a positive note I thought that I would share my recent news; I am no longer required to have a yearly MRI and my neurologist was so happy with my progress in the past year that he has released me from his clinic, hooray for that!

Bye for now


The Importance of Sleep

If you think that cutting back on sleep won’t affect you then think again. Fatigue played a considerable role during the 70s and 80s in some of the worst preventable disasters the world has ever seen. Investigations revealed that sleep deprivation was a significant factor in the 1979 nuclear accident at Three Mile Island, as well as the 1986 nuclear meltdown at Chernobyl.

Investigations of the grounding of the Exxon Valdez oil tanker, as well as the explosion of the space shuttle Challenger, have concluded that sleep deprivation also played a critical role in these accidents. In both cases, those in charge of the operations and required to make critical decisions were operating under extreme sleep deprivation. While the Challenger disaster put the multi-billion dollar shuttle program in peril, the Exxon Valdez oil spill resulted in incalculable ecological, environmental, and economic damage.

According to a resource from the Division of Sleep Medicine at
Harvard Medical School, not getting enough sleep—whether for just one night or over the course of weeks to months—has a significant effect on our ability to function. Sleep deprivation negatively impacts our mood, our ability to focus, and our ability to access higher-level cognitive functions.

Being tired has the same effect as being drunk, it affects your motor functions, speech, memory, decision making, problem solving, and results in aggressive and impulsive behavior. When I reflect on how much I was pushing myself to keep going, trying to make sense of the decline to my executive functioning skills, and hitting brick walls whilst seeing different specialists in hope of an answer, it amazes me that it had to take a CIS  demyelinating MS attack to finally switch me off!

Instead of being able to focus on getting some rest to try to get better and find the cause of this debilitating fatigue, I was being placed under further stress both from my employer, and their specialists who kept insisting that I was fatigued from depression and could therefore return to work, and my own family thinking that I was sleeping due to being lazy and making things worse by not helping out around the house or allowing me to rest, plus having their friends coming over giving me additional mouths to try to feed despite having suffered a drastic cut to my incoming income literally overnight. I honestly began to believe that I was going insane so how I didn’t wind up in a padded cell with all of this going on still remains a mystery.

If you are having sleep issues try answering the questions in the Epworth Sleepiness Scale to see how your sleep is affecting you, you might be surprised by your score.

If you would like to continue reading my journey please make sure that you subscribe so that you receive an email notification when the next blog is available. Thank you to those who have liked and subscribed so far, it is encouraging to know that some people are finding this to be of interest, and that is what motivates me to continue to share my personal story. And don’t forget that you can use the comments section to ask questions or discuss the blogs relevance to your own life.

It’s time for me to go and take a nap, so it’s bye from me for now.

The Arrival of the Red Herring

During the ongoing fatigue investigation I was also seeing a psychiatrist as I had been diagnosed with depression in 1998 and the fatigue that I was experiencing was thought to be (by the specialists who my work had sent me to see) as a result of my depressed state. If you had lived with being sleep deprived for roughly 35 year’s I think you too might be depressed!

I was also aware of how my fatigue from depression was completely different to the fatigue that I was experiencing and thankfully my GP believed in me and continued to support me throughout this time, if I hadn’t had her support I most certainly would have been forced to resign a lot sooner than when I finally had to weigh up my options and take the opportunity to accept a package and leave that way, rather than be bullied every time I was late or simply could not get up and go to work. I found the psych appointments to be pointless as we rarely achieved anything, that is until much later and I will get to that later in my blog.

The Red Herring’s arrival in August 2013 sent me on a major detour. I had been having random numbness in my right hand, and had put it down to the bursitis injury that I had in my shoulder in 2012. This injury occurred at work; I was “on loan” to a processing team and had been assisting them to catch up on a backlog of claims. As I was working for them remotely, I would sit at my desk and input data all day long which is when I started to have the noticeable memory issues. Instead of taking regular breaks away from the computer I kept inputting data and one day whilst typing I felt this sharp pain in my shoulder. I tried to keep going but the pain was becoming so bad that I had to stop. I advised my supervisor and was told to go straight to the doctor and of course my good one wasn’t available so I had to see whichever one had an appointment that day. After being sent for a scan I was told that I had bursitis in my shoulder and this meant time off of work, thankfully it happened at work and I was able to go on Work Cover. The injury took quite some time to heal, and I eventually made it back after doing a gradual return to work.

On the morning of the red herring’s arrival, I woke up with not only the numbness in my hand but also numbness in my right foot and left toes I knew that I could no longer blame the previous injury for that so I went to the doctor and got lucky as my GP had a cancellation. She gave me a referral to have a CT Scan and when I left the surgery and called Bensons Radiology to make an appointment they had just had a cancellation and could fit me in the very next day. At my follow up appointment with my GP I was told that the scan had detected multiple areas of white matter and that demyelination would be the likely cause and MS would be high on the differential, the report advised that I should be sent to have an MRI. I was given a referral to have an MRI and she also sent a referral through to the neurology clinic at the local hospital, I was about to have a neurologist added to my ever growing list of specialists! The MRI was booked for the 10th of September and my first appointment at the neurology clinic is what I will write about in my next blog update!

Subscribers receive an email whenever there has been an update, if you would like to continue reading my journey please subscribe. Thank you to those who have liked and subscribed so far, it is encouraging to know that some people are finding this to be of interest, and that is what motivates me to continue to share my personal story.

Having a rare disorder means that the potential audience for this is quite small and specific, and that is of no concern to me as I hope to write something within this blog that will resonate with at least one person who until reading my blog, had not considered narcolepsy to be a possible reason for their symptoms.

Thanks for reading, bye for now.