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&gt; 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.