I’m sleeping my legs away

The year I was born, 1989, a Danish band called D-A-D published a song called ”I’m sleeping my day away”. It is still considered to be a great hit and most Danes know of the song. The song is about being “a creature of the night”, hiding under the covers in bed when the sun is out and about playing the game of “After dark”.

This song kind of stands as an opposition to my situation after getting lymphedema. I quickly learned that sleep and a steady sleeping rhythm is essential for me if I want to take care of my lymphedema. Turning my sleeping rhythm around in the weekends or on vacations can be a disaster when I have to go back to my normal working schedule, where I have to go to bed several hours before midnight and get up before 7 am. And if I do not get the proper amount of hours of sleep, I wake up in the morning with a lymphedema going crazy. My legs are extremely swollen, the tissue in my legs much harder than usual and I go through the day feeling like I am dragging around to giant beams.

Even a few days of not getting enough hours of sleep during the night, can be a catastrophe and potentially create a higher risk of getting an infection in my legs as a result of the lymphedema worsening so much. If I on the other hand get sufficient and good sleep, my legs will be much thinner and my lymphedema doing much better.

I therefore try my best not to turn my daily rhythm around; the consequences of doing that are too massive. I am not sleeping my day away; I am sleeping my legs away, or at least the oversized part of them, by getting a good nights sleep.

Sufficient hours of sleep and a good enough sleep is important if we wish to function well in our daily life. Bad or too little sleep can result in having a hard time concentrating or learning new things. In the long run it can result in a weakened immune system, which especially can be problematic for people with lymphedema.

However, at times it has been very difficult for me to sleep and the effect on my lymphedema becomes obvious quite fast. As a result of that I have experimented with different techniques in an attempt to get the best and most steady sleep as possible. That is the basis for this article: Passing on my own experiences with the importance of sleep when you have lymphedema and at the same time to pass on my own experiences on how to get better sleep to try and help others not having their lymphedema suffering under too little or bad sleep.


The best way to go: A steady goodnight ritual

If you ask me, the best way to ensure a good nights sleep every night is to have a steady “goodnight ritual”. Doing the same ritual around an hour before bedtime teaches the body that it is time to sleep.

A steady goodnight ritual includes going to bed around the same time every night. Of course you can go out on Fridays staying out late without it being a problem, but as a main rule it’s my experience that it is a good idea to stick to the same bedtime.

I try holding on to the goodnight ritual as described below, because that works very well for me. It is also satisfying – and healthy for my mind and lymphedema – to do those specific activities before going to bed, because they make it easier to “shut down my brain” after a long day.

  • Around 9.15 pm I go brush my teeth and wash my face.
  • I then turn off all the lights in the rooms that I will need to walk around in for the last hour before going to bed.
  • I go to the living room, still with all the lights turned off, and then do 10-15 minutes of yoga in the dark.
  • Afterwards I roll up my yoga mat, go to the bedroom, sometimes put on my Jovipak (you can read about the Jovipak here) and jump under the covers.
  • Sometimes I read for 15-30 minutes after going under the covers, using a little night lamp.
  • Once in a while I put on a 15 minute sleep meditation guidance on my phone.
  • I put on my night mask to make sure I do not get disturbed by lights streaming through the blinders and then I go to sleep. The clock is around 10.15-10-30 pm at this point.

As many people already are aware of, the light from computers, smartphones and so on is responsible for making the body and mind having a harder time falling asleep – and more and more people do therefore not get a sufficient amount of sleep. Looking at my phone, the television or the computer undoubtly has a tendency to make it harder for me to fall asleep and I therefore avoid using electronics the last hour before going to bed.

In that relation, many electronic devices have a night mode-setting which can make the light on for example your smartphone more red/yellow at a specific time in the evening. I would very much recommend others using that function if they have the need for looking at their phones the last few hours before going to bed.


What to do when you cannot sleep

As you will be able to read about in some of my other articles, I was on sick leave from my work in 2017 for about 6 months. This was because I suddenly found myself suffering under severe stress symptoms. One of the hardest things dealing with when suffering from stress was not being able to fall asleep even though I was exhausted and in desperate need of sleep.

The thing that worked best for me was creating that steady goodnight ritual as mentioned above. But if I was stupid enough not to follow that ritual or the ritual did not work on a specific “stupid day”, I had to do something else. Down below I have listed some of the things that usually worked well for me when I suffered from insomnia – and that I still use if I once in a while experience trouble sleeping.

  • A change of scenery
    It very often helps me to “change the scenery” when I have laid in bed for hours not being able to sleep. I therefore grab my duvet and my pillow and go into the living room and lay down on the couch. It somehow calms my brain down to go in there instead – probably because there is no expectation of me needing to fall asleep like there is when I am lying in the bedroom.
    I often fall asleep only a few minutes after lying down on the couch.
  • Listening to an insomnia meditation session
    When I have trouble sleeping, it sometimes makes me fall asleep to listen to an insomnia meditation session on my phone. I have tried out many meditation apps and have found the app “Breethe” works well for me. However, this is a matter of personal preferences, so I would advise others to try out different meditation apps to find the one that works best for them.
  • Dripping lavender oil on the pillow
    The smell of lavender has a calming effect and is capable of helping you falling asleep. I drip a bit of oil on my pillow or have a small piece of tissue on the nightstand on which I had dripped a few drops of lavender oil.
  • Accept that I cannot sleep – and start reading
    Sometimes I just can’t fall asleep. It seems to be an impossible task. On nights like that it does not help me to keep trying to fall asleep. That will only result in me getting more frustrated and making it even harder to feel at ease. I therefore turn on a night lamp and read. Usually this will wear me out within 30-45 minutes and then makes it possible for me to fall asleep.


My best advice

If I was to give others with lymphedema an advice – based on my own experiences – it would be to prioritize sleeping. To “normal people” sleep is important, but with lymphedema it seems that sleep is not only important, but truly essential for your well-being. To get this essential sleep a steady goodnight ritual can help you a great deal.

I myself fall through sometimes and live as a “creature of the night” on vacations and skip all my steady sleeping habits, but it haunts me for weeks after and it is not worth it. Even though it might seem attractive and cosy sometimes to sleep the days away and use the night hours as your time to have fun, the following disruption of your daily rhythm might cause problems the following days, perhaps even weeks.

But with that being said, of course people with lymphedema can go out on the town dancing all night and sleep in the following day even though we have lymphedema. I believe the challenges occur when we turn our rhythm upside down for several days in a row and have to get back into to the complete opposite daily rhythm shortly after. But again, that is my experience – it might work quite differently for others 🙂

Despite the D-A-D-song might not have the best of message for us lymphies and we shouldn’t go live as creatures of the night, it is still an awesome track, so we have just got to dance our days away to the track instead.