Sleep issues are normal for anyone with chronic illness. They can range from too much sleep, not enough sleep, insomnia, nightmares, hallucinations, sleep apnea, and every other problem with sleep you can think of.
It's not so bad dealing with one of these issues, but I find the hardest part is that you can deal with every single one of these varying sleep issues in an unexpected manner. There is not necessarily a pattern with sleep problems.
Just because they are considered an 'expected' part of lifelong illness does not mean that these issues are simple. It is a continuous struggle. How can you plan anything ahead of time if you have no clue whether or not you'll be able to sleep at all that week... or if you'll be awake at all that week?!
The Lighter Side of sleep issues is that you eventually learn a lot about yourself. You learn what it feels like to function on half an hour of sleep. You learn how much sleep your body will require after certain levels of activity. But the best part, the best part, is that you learn to have an appreciation for great movies, books, or audio stories.
When I can't sleep, I tend to watch movies. I put a movie on, or a scary story podcast to listen to, and I get into a storyline, while allowing my body to get the rest that it needs, even if my mind never reaches REM sleep.
Sure I may suffer from permanent dark circles and I never feel fully rested, but that's just part of the package, so why not indulge in something enjoyable when a symptom is plaguing you.
I remember being in University and suffering from severe insomnia because of medications that were keeping me alive. Sleeping 30 minutes a night is not something that can be maintained, and it does not end well, but during those months I was able to be very productive. I would dive into research projects, or essays, or I would find a 24hr gym.
Always remember that making the most out of a difficult situation does not make your suffering less legitimate. There will be people who see you pushing through your worst symptoms and automatically think that you have it easy.
The truth is, they say that a true artist will make their art look easy - like anyone can do it. If you are suffering, truly suffering, with daily pain and a list of painful and frightening symptoms, and people think that you are well, that means you are brave. I mean, every single one of us is brave in our own way, but to take on an excruciatingly difficult illness and have people believe it's 'not as bad as it sounds', maybe you're simply an artist and are making the disease look easy to handle.
Random thoughts from someone who can't currently sleep.
Sorry if it came off as ramblings.
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