WAKING UP TIRED

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.

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 10^th 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.

Increasingly Forgetful

When you have spent the majority of your life waking up tired you don’t know any different, in fact I honestly thought that everyone must wake up feeling the same way, boy was I ever wrong!

I didn’t even begin to suspect that something wasn’t right until around 2012 when I began to have trouble remembering numbers that I had only just looked at when inputting data at work. I was literally looking at a form while typing and having to double check everything I was doing which was slowing me down. Or I would read the paperwork that accompanied a payment claim, and had to reread it numerous times whilst inputting the information on to the record.

I had always enjoyed reading and that too was beginning to become more and more difficult. I would read a paragraph and by the time I had started the next one I had forgotten what I had just read, so by the time that I got to the end of a chapter I had only a vague idea of what was happening in the story. For someone who would buy a book a week, some times more than one and finish it this was quite frustrating.

I would use my commuting to and from work time to read and always read for an hour or so when I went to bed, the bedtime reading was the first to go as I couldn’t get through a page without becoming that confused and tired that it was pointless even attempting it any more. I eventually stopped carrying a book with me as it was no longer an enjoyable escape; it was making me feel tired and taking up space in my bag.

It was shortly after this that I began to struggle to get to work on time. I was doing what I had always done as far as getting up, making breakfast, packing lunches for the kids, waking them up for school and then jumping in the shower to get ready for work while they ate etc, but getting out the door to catch the bus or train on time was becoming harder to achieve. I often missed the one that I needed to catch to arrive at work on time and naturally that became an issue with my work, so much so that I had to report to the manager when I arrived every day and I had to call work whenever I was running late. A combination of my failing to leave on time and on occasion leaving on time but public transport not running on time was getting to be too much, the pressure was making me quite anxious to the point where I was having mini panic attacks.

Stress only made me worse, the more pressure I was under the worse my fatigue would be, so by the time that I sat down at my desk I was absolutely exhausted, add to that the gradual above-mentioned memory issues and you can get an idea of how my job that I had loved was becoming very unenjoyable.

I tried everything in an attempt to resolve this, setting an earlier alarm, showering the night before, packing lunches the night before etc etc but nothing helped, so it was time to try to find out what the hell was going on. I made an appointment with my (good) GP, by good I mean the one that you go to when there is a serious health matter rather than the one you go to for a sickness certificate because you have the flu. My GP is excellent and naturally you can’t just ring up on the day and get an appointment as she is always heavily booked.

In January 2013 I went to see my GP and discussed what had been happening, I mentioned the fact that I snored and wondered if I had sleep apnea, which of course would lead to the extreme fatigue that I was experiencing as well as memory issues. She referred me to the QEH respiratory clinic and the specialist that I saw booked me in for an overnight sleep study formally known as a polysomnogram. I had a follow up appointment at the QEH and was advised that I do not have sleep apnea, was told to lose some weight and quit smoking and I would then be fine!

With apnea eliminated she then referred me to a physician who specialised in chronic fatigue syndrome (CFS), he asked me questions, provided me with a sleep diary to complete, sent a request to the QEH for my sleep results and booked me in for a follow up appointment at which he advised that I did not have CFS. He then provided sleep hygiene information and sent me back to my GP.

By this stage I had seen two “specialists” because of my fatigue and neither one had thought to investigate what else could be causing it. If only one of them had considered narcolepsy and sent me for another sleep study followed by a Multiple Sleep Latency Test (MSLT) I may still have my job! Unfortunately this was not the case; everyone blamed it on my depression that I had been diagnosed with back in 1998. I was to be seen by many other specialists until finally being tested and diagnosed and how that eventuated will be in the next installment of Waking Up Tired.

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

What I have done to help raise awareness

World Narcolepsy Day – Dreaming about a Bright Future is what I wrote on my project_sleep cloud.

As you know, I started this blog in an effort to help raise awareness for World Narcolepsy Day. I have also written a song and hope to have this available on here for you all to listen to within the next few weeks, so keep your eyes out for updates!

<p class="has-drop-cap has-foreground-dark-color has-background-dark-background-color has-text-color has-background" value="<amp-fit-text layout="fixed-height" min-font-size="6" max-font-size="72" height="80">The song is titled "The Underground Railroad", and it is about a fellow narcoleptic from history whom I admire HARRIET TUBMAN, and I sing it with a dear friend of mine who is an indigenous Australian woman who has performed with some of the best Blues musicians in Australia, the one and only Gail Page!The song is titled “The Underground Railroad”, and it is about a fellow narcoleptic from history whom I admire HARRIET TUBMAN, and I sing it with a dear friend of mine who is an indigenous Australian woman who has performed with some of the best Blues musicians in Australia, the one and only Gail Page!

Harriet was an American abolitionist and political activist. Born into slavery, Tubman escaped and subsequently made some 13 missions to rescue approximately 70 enslaved people, including family and friends, using the network of antislavery activists and safe houses known as the Underground Railroad. During the American Civil War, she served as an armed scout and spy for the Union Army. In her later years, Tubman was an activist in the movement for women’s suffrage.

Born enslaved in Dorchester County, Maryland, Tubman was beaten and whipped by her various masters as a child. Early in life, she suffered a traumatic head wound when an irate overseer threw a heavy metal weight intending to hit another enslaved person, but hit her instead. The injury caused dizziness, pain, and spells of hypersomnia, which occurred throughout her life. After her injury, Tubman began experiencing strange visions and vivid dreams, which she ascribed to premonitions from God. These experiences, combined with her Methodist upbringing, led her to become devoutly religious.

In 1849, Tubman escaped to Philadelphia, only to return to Maryland to rescue her family soon after. Slowly, one group at a time, she brought relatives with her out of the state, and eventually guided dozens of other enslaved people to freedom. Traveling by night and in extreme secrecy, Tubman (or “Moses”, as she was called) “never lost a passenger”.

After the Fugitive Slave Act of 1850 was passed, she helped guide fugitives farther north into British North America (Canada), and helped newly freed enslaved people to find work. Tubman met John Brown in 1858, and helped him plan and recruit supporters for his 1859 raid on Harpers Ferry.

When the Civil War began, Tubman worked for the Union Army, first as a cook and nurse, and then as an armed scout and spy. The first woman to lead an armed expedition in the war, she guided the raid at Combahee Ferry, which liberated more than 700 enslaved people. After the war, she retired to the family home on property she had purchased in 1859 in Auburn, New York, where she cared for her aging parents. She was active in the women’s suffrage movement until illness overtook her, and she had to be admitted to a home for elderly African Americans that she had helped to establish years earlier. After her death in 1913, she became an icon of courage and freedom.

I found a fabulous movie online this week about Harriet if anyone is interested in watching called ‘Harriet Tubman and The Underground Railroad’ it is starring Ruby Dee as Harriet, it was made in 1964 and in my opinion is far better than the more recent video released called ‘Harriet’.

Here is the YouTube link to the movie https://youtu.be/-7J-yWP1f7w, let me know what you think if you do watch it, and remember to subscribe and keep your eye out for updates about my soon to be released song!

Raising Awareness

<p id="RaisingAwareness" value="<amp-fit-text layout="fixed-height" min-font-size="6" max-font-size="72" height="80">Today I will be joining "<a href="https://www.pbafm.org.au/shows/the-kitchen-table/">The Kitchen Table</a>" at 1.30pm (SA time) to discuss narcolepsy to help to raise awareness of this chronic neurological condition. Tune in to <a href="https://radioau.net/pba-fm/">PBAFM</a> 89.7 FM to hear the interview.Today I will be joining “The Kitchen Table” at 1.30pm (SA time) to discuss narcolepsy to help to raise awareness of this chronic neurological condition. Tune in to PBAFM 89.7 FM to hear the interview.

#WorldNarcolepsyDay #ProjectSleep #NODS #NarcolepsyAustralia

World Narcolepsy Day

September 22nd is the second World Narcolepsy Day. Last year Narcolepsy Australia organised “Meet Up’s” around the country, but unfortunately due to the C-19 Pandemic this will not be happening this year.

The American non-profit organization Project Sleep co leads an awareness campaign with a series of online activities, story sharing events and training sessions throughout September to honor and empower our diverse international community.

On Tuesday, Sept. 22, 2020 at 9 a.m. EDT, Project Sleep will host a featured event, “Narcolepsy Around the World: An International Panel of Experts” with preeminent experts across five continents, including:

David Cunnington, MD, Melbourne Sleep Disorders Centre, Australia
Yves Dauvilliers, MD, PhD, University of Montpellier, France
Yu-shu Huang, MD, Chang Gung Memorial Hospital and University, Taiwan
Christianne Martins Bahia, MD, Rio de Janeiro State University, Brazil
Emmanuel Mignot, MD, PhD, Stanford University, USA
Giuseppe Plazzi, MD, PhD, University of Bologna, Italy

The panel will highlight recent research updates, the impacts of the 2020 global pandemic and any unique barriers faced in treating patients with narcolepsy in their respective countries. To watch this live broadcast, tune in via Project Sleep’s Facebook Page on Tuesday, Sept. 22, 2020, at 9 a.m. EDT: https://www.facebook.com/ProjectSleepAwareness/.

To learn more about narcolepsy and be the first to know about Project Sleep’s World Narcolepsy Day activities, visit our World Narcolepsy Day webpage.