Sleep Matters


I imagine many of you can relate to this e-card. I never really understood insomnia until I became sick. I was always very fortunate to enjoy a great sleep pattern. Sure, one night every few months I might not sleep well, but it was rare. Now I face a nightly struggle to get 8 hours of shut-eye. 

For rare disease patients, sleep is critical. It gives our bodies a chance to recuperate. I don’t need to hash out all the benefits of sleep, we hear about them often. I’d rather focus on the lack of emphasis in helping rare disease patients sleep. After all, many of our treatments (I’m looking at you prednisone) tend to induce horrible insomnia.

So what can we do to improve our quality of sleep? I will admit that Benadryl became my friend after chemo. I found that it was extremely difficult to stay asleep after a few hours. This ultimately forced me to nap at various times during the day. I couldn’t function like this, so I turned to medication. However, after seeing stories of a possible link between over the counter medications and dementia, I am afraid to take it now! Melatonin is a no-no for me, so I’m stuck looking at organic ways to increase my sleeping patterns.

This is where I am stuck. I have a dark, cool room. I run a fan to drown out noise and my bed is comfortable. So the environment is right. My old nightly rituals do not help my problems, so I’m looking at the medical community. Certainly I am not the only rare patient who has trouble sleeping! Perhaps there is room for improvement, maybe a safe medication that has yet to be discovered? Only time will tell.

Until then, I look forward to the few days each month where I actually feel well rested.