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.
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.