My Strategies for Living With a Rare Disease Long Term
Living with a chronic rare disease is not for the faint of heart. For most of us, there is no finishing line.
Hard days can drag into bad days, which drag into even worse days. It certainly doesn’t help things if I am not giving myself time to recover from busy days or busy weeks.
Rest days are an important part of my treatment plan
Sometimes, a full dedicated day to rest can help reduce the worst of my symptoms. Sometimes, it takes many rest days before I start to feel more functional as a human.
As a person living with the rare disease that is narcolepsy, rest days are an important part of my treatment plan. Rest days can look different for everyone, depending on their needs and their schedule.
For me, rest days look like this:
I dedicate time to nothing else but rest
Yes, you guessed it. Rest days look like RESTING — actual, dedicated time to doing nothing but resting. For people with narcolepsy, we struggle with interrupted sleep. So, no matter how tired I am, I am going to wake up from sleep exhausted but unable to fade back into oblivion. It’s important that I stay in bed during these wakeful times and try to find the next bout of sleepiness, so I can continue resting.
This means that I need to avoid scrolling on my phone! Because staying on my phone will wake me up more than just letting myself space out staring at the ceiling, reading, or journaling.
I stay fueled and hydrated during rest days
It’s important for me to have easily accessible meals during rest days. As long as a meal can be prepared in less than 10 minutes, I am safe. Otherwise, I might go the whole day without eating because I am too tired to get up and dedicate an hour to preparing food.
It’s also important for me to not get caught up in doing dishes or cleaning on these days of rest. Maybe washing a dish or 2 just so I have them for my next meal. But avoiding too much housework is important for me on rest days. It can easily escalate into overextending myself.
Additionally, it’s important to stay hydrated on these days! It can be easy to simply forget to drink water while lying in bed all day. Keeping a jug of water by my bedside is helpful, so I don’t have to get up to drink water.
I set firm boundaries to protect my rest days
Not really. But when friends ask if I am available to hang out on my rest days, I have to tell them, “No.” If I use my rest days to go on errands or trips with friends, I end up in worse sleep debt than before the day started. It’s a terrible cycle.
Having firm boundaries is important for me when it comes to my days of rest. Rest days are for JUST that - REST.
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View all responsesRest days are part of my long-term strategy for living with a rare disease
Remember, rest days are not vacations. What I do on rest days is important work. Resting ensures that I have the energy to invest in the things I really want or need to do later on.
I invest my time in rest days to ensure that I do not run myself into the ground while living with a very difficult rare and chronic disease.
You are not alone in this! How are rest days helpful for you and your health? Feel free to share in the comments!
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