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For my entire life, I have had issues with sleep. It stems from my love of scary movies. It is hard to fall asleep when you are worried about what is under the bed. This lifetime of conditioning has made it so it has always taken me a long time to fall asleep. Couple this with the fact that I have autoimmune hemolytic anemia, cold agglutinin disease (CAD), which makes you hot and cold all night long and you can see how sleep is difficult.

There is so much that comes with having CAD. The symptom flare-ups that occur when you get cold. The stress of knowing that you have a rare disease. The concerns that you are unsure of what the future holds and the realization that it consumes your entire life. I think about it all the time, I talk about it all the time and I research it all the time. No wonder it is hard to sleep; this all spells stress.

I cannot tell you how many times I wished I did not know. I spent years trying to figure out what is going on with me as the symptoms would come and go and because it is rare, doctors never thought to test for it. The saying that ignorance is bliss is spot on. I would be able to sleep if I could turn my mind off.

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I have spoken with other CAD patients, and they too have sleep issues. In fact, I read a study where 43.8% of the CAD participants interviewed had sleep issues. Why is it that CAD causes sleep disturbances? Well, it is thought that middle-aged people begin to experience problems with sleep and many people experience the onset of CAD later in life. And it is thought that secondary CAD is associated with some sort of infection, which in itself can cause sleep disturbances.

I have been told I have primary CAD, meaning they have not found a reason for my CAD. Since I am primary, you would think that should rule out the sleeplessness due to not having a secondary infection. It does not, so what can we do to ensure a deeper and quicker sleep?

I know a lot of people use melatonin to get a good night’s rest. It seems perfect but there are plenty who report feeling groggy in the morning. I have not tried it. Now that we are back to our new norm, my jobs require me to be on the road every day. It just would not be smart in the event I wake up groggy and could have an issue driving.

I also found as I have gotten older I require a solid 8-9 hours of sleep. I am just simply exhausted if I get any less. So, I needed to find the best plan to get as much continuous sleep as possible.

I cannot stand silence when I go to sleep, and having the TV on gives me a headache so I instead use a sound app. I use the Rain app; it has been extremely helpful. I try to find sounds that create a calming environment. It provides a situation where I can turn my mind off, which I believe is my problem.

Oddly, I found out that heavy meals or spicy foods are stimulants and make sleep more difficult. It is best to avoid eating these late. There is another study that found that for participants who let natural light into their homes for a week, it helped them fall asleep 22 minutes quicker, they slept more regularly and felt more alert the next day. And another study found that blue light, like that from our TVs, computers, and cell phones should be avoided hours before bedtime as it decreases melatonin levels and disrupts the sleep cycles.

I found what works best for me is to shut down the TV about an hour before bed. I do deep breathing as I lay in bed, which is great for my lungs and is very relaxing. I set up my sound app with a timer for 1 hour and it is all conducive to a good night’s rest.