Sleep is Elusive

Why is it so difficult to sleep?

You may remember that I wrote about the importance of sleep. I had actually gotten a good night’s sleep recently. However, it seems to be rare. With chronic illness and pain, it appears that that sleep is difficult to achieve on a consistent basis. I have gone entire nights without sleep, several days in a row, with no naps during the day. I don’t even want to think about what that does to my body.

So I need to develop some more concrete steps to make sleep, especially restorative sleep, happen. This is my plan to get some sleep at all. Restorative sleep is a goal I can work on in the future.

    Set a bedtime of 1 am (I’m a night owl so I have to start out with a reasonable time);
    Keep the bedroom dark and cool;
    Get ready for bed at 11 pm;
    Turn off all electronics and the television except my kindle at 11 pm;
    Assemble everything I need to sleep that minimizes the chance of pain keeping me up;
    For me, that would include a cold pack for my head and a warm pack for my neck to keep the Trigeminal Neuralgia at bay;
    Find a comfortable position to encourage relaxation and minimize pain;
    Read from my kindle until 12:30 am;
    Meditate at 12:30 am, preferably using a sleep meditation; and,
    Fall asleep by 1 am, or at least, that’s my hope.

This strategy would likely work for most people (I look in awe and with a little jealousy at those who fall asleep when their head hits the pillow). People with chronic illnesses and pain have to work at sleep more than the average bear.

In my case, working against me are:

  • Lupus (body pain, among other things);
  • Trigeminal Neuralgia (appropriately nicknamed the suicide disease) (extreme facial pain);
  • Fibromyalgia (more body pain)
  • Myalgic Encephalomyelitis (M.E.) (exhaustion often paired with insomnia)
  • Autonomic Dysfunction (Dysautonomia) (my autonomic nervous system doesn’t work properly);
  • Adrenal Insufficiency (my adrenal glands can’t produce much cortisol);
  • Raynaud’s Phenomenon (my extremities, especially my hands and feet, are usually cold);
  • Myofacial Pain Syndrome (pain in my neck and shoulders);
  • Migraines (not usually a problem since I have had a fair degree of success with a new drug);
  • Chronic kidney disease (my kidneys aren’t functioning well);
  • Chronic Liver Disease (my liver isn’t able to properly filter toxins out of the blood)
  • Anti-Phospholipid Syndrome (thick blood that can cause blood clots);
  • Lumbar Disk Degeneration (pain in the lumbar area of my back);
  • Cervical Spinal Stenosis (neck pain);
  • GERD (a more extreme version of heartburn);
  • Arthritis from Lupus and Osteoarthritis (occurs everywhere in my body); and finally,
  • Transient Global Amnesia (don’t remember doing or saying something, but it doesn’t occur often, thank goodness).

These diseases don’t cause pain or insomnia all at once, but they seem to like ganging up on me at bedtime, making it extremely difficult to sleep; however, that just means that I have to work harder than most to get some sleep.

I guess it’s too late to start my plan tonight given the hour. Also, events may occur that can mess up our carefully crafted plans, like my husband arriving home from Edmonton at midnight tomorrow night. My intention when those things happen is to take it in stride and just start my bedtime routine as soon as possible afterward.

I wish everyone success in achieving some kind of sleep. To those who already get sleep itself, I wish you the best restorative sleep possible.


Many nights, I am awake the entire night without even a minute’s sleep. Something that most people take for granted is elusive for those that suffer from chronic pain and illness. There are also other reasons for lack of sleep. My doctor recommended a sleep study which gave me hope. In the end, I was diagnosed with severe sleep insomnia, As a bonus, I was told that I did not experience REM sleep. But I had a diagnosis. Now I could start treatment. Throughout my life, I had been looking for answers, so this was exciting, or so I thought.

Sadly, I was left to deal with the diagnosis alone. I was not told about sleep hygiene or any of the other ways to deal with insomnia. Having an analytical personality, I researched every method I could that could help me sleep. Unfortunately, I experienced random nights/hours of sleep, leading me to wonder what particular strategies, if any, were responsible. Many people with chronic pain and illness suffer from insomnia, so what do we blame for our lack of sleep?

The doctor who was responsible for reviewing the results of the sleep study did not offer any suggestions. Having an analytic background, I eventually did discover such strategies as sleep hygiene and many others. In spite of that, sleep was elusive and seemed random.

In fact, I was dealing with PTSD. As long as I could remember, as a child, I was brutally beaten, taught that it was ok to be emotionally abused, and forced to undergo incest, all courtesy of my Father. My Mother refused to help, regardless of how much I pleaded. I finally left home to go to my Grandmother’s the day I turned eighteen. I never returned.

Given the lessons I learned as a child, I was taught that I deserved to marry an abusive husband who continued the monstrous treatment. I was well-educated, my Father was a university professor, and my husband was poorly educated (my thoughts were that education prepared people to be experts in their individual fields, but did not make them good people). Intellectually, I knew that the beatings and rapes were wrong, but emotionally, I felt that I deserved all of it.

Finally, my husband went too far, was arrested and taken to jail. When my five-year-old daughter came to me as I lay stunned on the floor, she said that “If I just did what [Daddy] said, he would not ‘have’ to hurt me”. Wow! That had a huge impact. I instantly decided to see a lawyer to begin separation procedures. I refused to have my young daughter believe that it was ok for people to beat her, or my even younger son believe that it was acceptable to beat anyone. It was a seminal moment in my life.

Luckily, I found a great Psychologist who helped me navigate the process and deal with the past. Later on, a wonderful, caring man appeared in my life. We had lived together for a number of years, before eventually getting married. We have been together for over twenty-three years. He has been so kind and loving, showing me what real love is, and helping me deal with remnants of PTSD and intrusive thoughts.

People with PTSD, even after counselling, are often left with hypervigilance, making it difficult to turn their brains off and relax. I still deal with those symptoms in spite of knowing that I am safe with my husband. However, intrusive thoughts and hypervilance remain, often keeping me awake at night. While mindfulness meditation and other sleep strategies have helped, chronic pain and illness exacerbate the struggle to sleep on a regular basis. I don’t imagine that will change, but the worst is over.

I began to lose faith in doctors over time. I was often given garbage answers, or even guesses. A lot of doctors didn’t seem to care enough to dig beneath the surface, or even pay attention to what I was telling them. I felt that many didn’t really care. I know now that some do, but a few of them have resorted to guesses, given that I have so many diseases with no cure and no proven treatment.

Insomnia is serious. After yet another sleepless night, I was barely able to walk this morning. Essentially, I was staggering, unable to function beyond the basics, and even they were a struggle. My husband is away visiting his Mother, so I had no one to help me. I eventually managed to get something to eat and slowly started to improve. I did spend the day in bed, planning how I would make it more possible to sleep tonight. There are no guarantees, but I am bound and bent to do my best to sleep tonight. I would prefer quality sleep, but I’ll accept quantity sleep at this time. Anything is better than nothing.

So if you hear people complain about continuous insomnia, affecting their ability to operate effectively, perhaps you will better understand what they are, or may be, dealing with.

May everyone who reads this have quality, restorative sleep tonight and the nights that follow.