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How Pompe Disease Has Complicated My Relationship With My Bed and Sleep

Most people look forward to coming home after a long day and putting on nice warm pajamas and watching their favorite television show in bed. Or maybe you like to snack while watching a good movie in bed, and there is nothing better than cuddling up with that special someone and a warm blanket on a cold day. However, in the last few years my relationship with my bed has become complicated.

To say I have a love/hate relationship with my bed and sleeping is an understatement. My Pompe disease affects my respiratory system and diaphragm, so when I am lying down I don’t breathe well. I currently sleep on four pillows and sleep almost sitting up. In January I fell asleep lying flat and stopped breathing as a result. When I stopped breathing I woke from my sleep and was in a panic, unable to take a breath. Fortunately my husband was there and was able to calm me down and talk me through it. After what seemed like a lifetime I was able to take a deep breath and get back on track, but ever since then I have been a little nervous when I go to bed at night.

My bedtime routine is well planned out. First I have to consider what I am going to sleep in. I can’t sleep in pajamas that are long pants or made out of a heavy fabric such as flannel. Second, before I lay down I have to adjust the four pillows I sleep on as to provide the most comfort. Next I lie down and adjust my sleep number mattress. The setting doesn’t need to be adjusted every night, but I check it just in case. I can tell when the setting is off, because I spend the night tossing and turning because I can’t get comfortable. Finally I pull the blanket up so it doesn’t hang over the side of the bed.

The first and last step in my routine are connected because I experience significant leg pain, which seems to be worse at night. Sometimes having the blanket or pajama pants on my legs feels like 100 pounds of weight, and it is hard to move. When the blanket hangs over the side of the bed this sensation is magnified.

Sometimes sleep and my bed are my worst enemies. I am tired at night, but sleeping on four pillows is hard on my body and causes me pain, and if I sleep lying on one pillow I may stop breathing. At that point it becomes a toss-up: do I endure the pain or do I risk not breathing? I always choose enduring the pain, or occasionally I choose sleeping in an armchair. Either way, I wake up feeling unrested and confused or like I have a hangover even though I didn’t drink any alcohol the night before. This makes it hard for me to start my day and to help my boys get ready for school or whatever they may be doing that day.

Sometimes I take a nap during the day because I didn’t get much sleep the night before, and even after sleeping for two or three hours in the afternoon, I am still ready for bed by 8:30 or 9:00 p.m. Some afternoons if I sit down for even a few minutes I can’t stay awake, and once I fall asleep it’s hard to wake up and get going again. It’s a cycle I am stuck in and sometimes feel powerless to break.

Traveling is interesting. The first thing I check when entering a hotel room is the bed, then the closet to look for more pillows. I can usually sleep on a hotel mattress for two or three nights depending on the quality; after that I begin to have lower back, hip and leg pain. I love traveling, so it’s just the price I must pay, in addition to the cost of the hotel room.

At times I have also felt like I was part of my bed, or any bed I am able to sleep in. I receive enzyme replacement therapy biweekly, which slows the progression of my disease, and sometimes I am so tired during
treatment that I imagine my body melting into the bed. I imagine myself becoming the bed and what it must look like to the nurses as they walk past. I imagine myself in that scene from “Avatar” where Sigourney Weaver’s character is taken to the sacred tree and connected to its life force after being gravely injured. You see the synapses feeding energy into her body in an effort to revive her; the plants on the ground begin to form a cocoon around her as the synapses deliver energy to her body. I don’t see myself as a giant blue alien, but the bed is my life force.

Sometimes I don’t have much energy and it is a struggle to talk to the nurses and tell them how I feel. Sometimes the only thing I can do is sleep to re-energize my body and spirit, and during those times I feel like my bed and I have a symbiotic relationship. The bed allows me to sleep which gives me energy. I feel dependent on my bed and without it I would not be able to start or continue with my day.

Many people have suggested I try a sleep aid, such as a sedative. I have used different sleep aids over the years, and they have worked well for me in that they help me fall asleep and stay asleep; however, the side effects have been enough to make me not want to continue to use them. I have exhibited some odd behavior while taking sedatives and didn’t realize it until my husband informed me of it the next day. I always woke up feeling unrested and confused or like I had a hangover, no matter the dose. My doctor has helped me find something that does help, but I still wake up feeling unrested and confused. It is not as bad as with the sedatives but it is still a feeling I would like to avoid.

Sleep is important and quality sleep is essential. Doctors say a lack of sleep can have the same effect as consuming too much alcohol. Lack of sleep and feeling lethargic have a significant impact on my life. It forces me to cancel plans, it has caused me to miss work, it impacts my ability to drive and to take care of my children, among other things. Sometimes we don’t realize the impact sleep has on our bodies and lives until we don’t get enough of or require too much of it.

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Thinkstock photo via tommaso79.