What I learned from not sleeping for 18 years.

For the first 18 years of my life I didn't sleep properly due to my chronic eczema. Sleep is another daily ritual that I had a love hate relationship with. On the one hand, I was so exhausted physically and mentally that I really needed deep sleep. On the other hand, I knew that most nights I would be itching.

Most of the time I would have disturbed sleep, nightmares and wake up in a sea of dead skin and blood. I would often wake up in the middle of the night with an uncontrollable itch. I would need to shower as well if it was really bad. All the while, the sound of the shower would disturb my family from their sleep.

I still remember using 'Prickly Heat' this cooling talc powder that I would apply to the crevices of my arms, behind the knees and in my crotch to absorb the excess moisture that was causing itching. I remember all the times I poured rubbing alcohol on myself to numb the pain. I still remember hitting myself repeatedly to stop myself from scratching. To allow the sensation of pain to override the sensation of itch. 

I would take an antihistamine that would make me drowsy, use an ice pack to cool my skin and apply my creams while watching whatever was on late night television. I don't think it is a coincidence that I ended up buying so many infomercial products including those pads you stick on your stomach and the ab rocking machine. Yet I had no abs to show for it! The mindless drama from a Jerry Springer show allowed me to be distracted from my skin as it calmed itself. Eventually I would become so bored of the show and the antihistamine would kick in so that I could go back to sleep again. 

The first thing I would do when I woke up was not look at my phone. I would look at my skin and my fingernails. If my fingernails were full of gunk, I knew I had done a lot of scratching that night. I would then inspect the damage I had done and look at my skin. Every time you see your skin scratched to pieces a little part of you dies. Yet you still keep hope. Maybe another product will work. Maybe I'll grow out of it. Maybe another miracle drug will be invented. 

Every day, I would take my sheets outside and shake off all the dead skin that had accumulated. If I let too much accumulate then dust mites would make things worse. I would actually place a loosely woven cotton sheet over the mattress protector to allow the dead skin to fall through during my sleep. I also had a plain sheet between myself and the blanket so that I could wash that more frequently. By layering, I could remove the blanket and still have a sheet if it became too hot. 

Through the hot Australian spring and summer I would use the air conditioning at night as my skin became itchy if it became too hot during sleep. This also dried the air so I would place a large bowl of water in my room and sometimes use a humidifier. 

I would wash my sheets every two weeks. Every other day I would leave them in the sun to dry which seemed to help them air out and deodorise. It took me over 10 years to realise that the laundry was causing low level chemical irritation of my skin. Bleach was especially irritating, it was actually clinging to the fabric and reflecting the light, making it appear brighter.

I washed my clothes in bicarb soda and white vinegar and every few washes added a small amount of plant based laundry liquid. This does not cling to the fabric as much. I washed my sheets on the hottest setting to kill the dust mites. I also cut out the fabric softening sheets in the dryer which helped. 

In the bathroom I had my own basket which is where my towels and clothes went so I could wash my clothes separately. 

Why was I itchier at night?

Apparently there are many physiological changes that occur in your body at night, including changes in thermoregulation, skin barrier function, and fluid balance. For example, your body regulates its core temperature to be lowest at night. It does this by increasing blood flow to the skin, which is what allows the heat in your body to dissipate. A rise in skin temperature can make you feel itchy especially if the room temperature or sheets are too warm.

Your body’s release of certain substances also varies by time of day. At night, you release more cytokines, which increase inflammation. Meanwhile, production of corticosteroids, hormones that reduce inflammation, slows. On top of these factors, your skin loses more water at night so it’s ability to retain moisture is also at its lowest at night.

What was my sleep routine?

To reduce the itching I made sure my skin was completely dry from the moisturisers before sleeping. This way nothing could stick to my skin and the excess heat from the shower could dissipate. 

I learned to shower very quickly in luke warm water for just a few minutes. This helped to retain the skin lipids and natural moisturising factor. However when the itch was unbearable I would scald my skin with hot water to allow the intense heat to override the itching sensation. I went from washing my hair daily with shampoo to weekly. I cut out using soap everyday to using a gentle pH balanced liquid cleanser only after sport.

I avoided caffeine and alcohol before bed as they widen the blood vessels and send more blood to the skin. I stopped eating at least 3 hours before bed so that my body wasn't trying to digest while it was sleeping. I wore light breathable clothes made of cotton.

Although I'm more of a night person, I aimed to sleep before 12 midnight and would get 7-8 hours of sleep. I would also download a TED talk and some calming music to listen to while I fell asleep. I put all my devices on Airplane mode and silent to reduce distractions. 

Whenever I slept deeply I was very grateful. This was usually when I deliberately used a drowsy antihistamine. However, this would also make it more difficult to wake up and make you groggy the next day. 

What did I learn?

When you don't sleep for such a long period you realise the value of it. The core function it plays in allowing us to rest, rejuvenate, consolidate learnings, dream and cut off from reality. Being unable to do so was absolute physical, emotional and mental torture. 

I'm still surprised by the amount of pain and sleepless nights I was able to tolerate. I remember so many times being close to giving up on life but the human spirit is resilient and stronger than you know. It is not until you have been stripped of something as essential as sleep that you realise how resilient you can be. Every small change that improved my skin however small gave me hope. Taking full control of my skin and not simply relying on supposed experts allowed me to regain my will to live. Hitting rock bottom makes you think you don't have much more to lose. At least it can only go up from here. 

Eventually I learned: What is more beautiful than growing from your pain?
I learned that my greatest pain would become my greatest calling. 

 

Leave a comment