For people who don’t live with a chronic illness or a pain condition, you may be able to relate by remembering the worst flu you’ve ever had. Remember that time when you couldn’t sleep because everything hurt, even though you’d taken medication for your symptoms and to help you sleep? You remember? OK, good. Now imagine it was at least 10 times more intense.
People with chronic pain live through this night after night. It can become a harrowing cycle, since a lack of sleep can ramp up pain levels, which results in another wide-awake night — even when we take our medication.
Still wondering what it feels like? Let me take you through it hour by hour:
This is my normal “bedtime,” or at least it’s the time I try to go to bed most nights. People with migraine headaches do better with a consistent sleep schedule. Additionally, keeping regular hours, in theory, helps your body recognize when it’s time for sleep. Still “bedtime” is in quotes here because I’m usually awake well past this time.
If I’m still tossing and turning at 11 p.m., I get up and take any medication I think may help. This could include medications for pain, inflammation or nausea. I may also take a muscle relaxer or an antihistamine — sometimes this helps me sleep — but it’s not the intended purpose of these medications. I may also seek out ice or heat. Then it’s back to bed. I may try to meditate to distract me from my pain and induce sleep.
Meditation is not enough tonight. At this point, I allow myself a distraction. Reading is my preference, but if I’m not well enough to read, I’ll go downstairs (so I won’t wake my husband) and turn on the TV. As I walk down the stairs, every joint snaps, crackles and pops. I lean against the wall and drag my feet to feel for each step and try to be careful not to fall (again).
Although the medication may have dulled my symptoms, I still hurt quite badly. At this point, I’m exhausted (if I wasn’t earlier on), but sleep still evades me.
I’m now too tired to stop myself from pondering, “Why me?” The rational side of me knows there are people all over the world who have it worse, but we’re way past rational at this point.
I start to wonder how many hours I have before I have to be awake. A quick check of the calendar reminds me I have two doctors’ appointments and physical therapy scheduled tomorrow. At most, I can get five hours of sleep. There won’t be time for a nap, either.
Thankfully, I wasn’t up past 4 a.m. or later, but it’s happened before and I’m sure it will happen again. I ended up getting approximately 4 and a half hours of sleep on that night, and I still had to go to my doctors’ appointments the next day.
That’s just one reason why a life with chronic illness/pain can be difficult. Not only do we experience pain and fatigue more often than most, but we’re frequently running on just a few hours’ sleep as a result of the beast we call painsomnia.
I hope this post helps people who have never experienced chronic pain or illness to understand this facet of our lives a little better.