8 hours – “What on earth happened”

I can hardly believe it myself – my Garmin flashed an 80 Sleep Score with the words: “You had a long, deep sleep. Sleep like this is critical for boosting your immune system and repairing your body.” Honestly, I expected it to say: “What on earth happened?” or “Have you sold me to someone else and not updated me?”

Sleep has been one of my toughest battles over the last few years. My recorded average has hovered around three to four hours at best, and many nights the watch recorded no sleep at all (often more nights than not so the actual average is a lot lower). In the last few days, something may have changed. For the first time since I started tracking, my weekly average crossed five hours. And last night? Eight hours. That’s a milestone — and this is without the new extra-comfortable electric bed that arrived today.

I haven’t fully decoded the reasons yet, but I have a few guesses: no daytime naps (not out of choice but because I can’t seem to get to sleep), exhaustion after a freezing episode, a sleeping pill which has been starting to help me more than all the others I have tried, a relatively high amount of exercise, lighter meals before bed thanks to my anti-choke diet, and turning off my phone and going straight to sleep. None of this is scientific – I’m a CPA, not a sleep researcher – but it feels good (yes, that’s the technical term 😊). And with home renovations finally done and the new bed, I hope this trend continues.

Poor sleep doesn’t just make you tired. It magnifies every other symptom and amplifies stress. For those of us living with Progressive Supranuclear Palsy (PSP), sleep issues are seemingly even more severe than in conditions like Alzheimer’s or Parkinson’s, although these too have pretty bad results. Research I have seen shows PSP patients average about 189 minutes of sleep per night compared to 325 minutes in healthy controls. Sleep problems affect most PSP patients and ripple out to impact families and caregivers. People with PSP often get far less sleep than normal, take ages to fall asleep, and wake up repeatedly through the night. The deep, restorative stages of sleep and REM sleep are almost wiped out, which means you never really feel rested. It’s not just about being tired – this lack of proper sleep makes every other symptom worse, from movement issues to stress and mood. It’s exhausting in every sense and has a huge impact not only on the person living with PSP but also on those around them. I truly feel the difference today to the average day where I am struggling with exhaustion. I think I am less ratty at home as well.

I’ve tried everything: sleep hygiene, CBT, pills, oils, supplements, even consulted a sleep neurologist who had no new ideas. What seems to help now? A mix of attitude, retirement, supportive surroundings, and a new medication I’ve been on for a few months.

We all know the likely inevitable result of writing this blog – a jinx, perhaps? But I’m counting on the effort of writing and some good vibes to help me sleep better. And one more factor to add to the pot – now that I am going to ease off the amount of blogging I do, it may also help, but we are yet to see on that front . I often blog about downturns – falls, freezes, choking episodes. Today, I want to mark an upturn, whether one off or longer term it is something I am pleased about. Eight hours of sleep and a Garmin score of 80, which Garmin classifies as “Excellent,” deserve a moment of celebration. It’s good. Really good.

Now having written this I am tired!

As always, this is based on my personal experience and not medical advice