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.

2 thoughts on “Sleep Matters

  1. Candace, God bless you for your courage and healing my dear! I also was blindsided in my early forties with odd symptoms starting about 1998 and after visiting an army of Doctors who kept throwing “wrong” Dx’s at the wall to see what stuck, I did not find out until 2004 it was Sarcoidosis of the lungs and the Irony of it was that I had been a Respiratory Therapist and never had heard of it and Doctors also seemed clueless to its signs. As to the insomnia I have also been in a battle w/it for the longest and don’t like Benadryl or Ambien for the reasons you mentioned why can’t you use Melatonin? I have tried it but it does not really work for me.

  2. If you solve your sleep problem, please share it. I wake up automatically after
    four hours. I read for about an hour and then sleep for another two hours.
    I’m always tired during the day and evening.

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