Monday 5 May 2014

Feeling Tired is Exhausting

I have a medical assessment I must undergo each month before I can take a certain injection. Here are three questions I am asked each time (amongst others):

1. Are you tired?
2. Are you fatigued?
3. Are you drowsy?

These are three different questions. Seriously. I still don't know if I understand the difference between the three but just trying to figure it out left me exhausted. To make it worse, I'm asked to rate my level of tiredness, fatigue and drowsiness. I always find this a difficult task because I don't know what my baseline is supposed to be--since I was diagnosed? Since I've been an adult? Since I've stopped drinking?

Sleep has always been elusive to me, at least since I've left my teen years. On average I probably get five hours of sleep a night, usually only about three of it uninterrupted. This has been standard for about the last 20 years and I do okay I on it. I may not always wake up feeling refreshed but once my day gets going I'm good until bedtime. I've never been one to nap during the day and have always had a hard time understanding grown-ups who do. Even a 10-minute catnap would keep me wide awake past midnight. This ability to function at a high level with little sleep has served me well over the years such as when we do our annual Black Friday shopping trip, which requires sharp decision-making skills and quick reflexes for about 36 hours straight, or when I decide I'm going to watch the whole fifth season of Sons of Anarchy over a two-day period.

The Merriam-Webster dictionary defines the three words as:
  • Tired--feeling a need to rest or sleep
  • Fatigued--the state of being very tired: extreme weariness
  • Drowsy--tired and ready to fall asleep
My own interpretation is that you can be tired but might not necessarily be able to go to sleep. Your body needs it, but maybe your mind or your schedule won't allow it. So you burrow through, usually get a little grumpy in the process, until you are fatigued, which means you have no trouble falling asleep when your head hits the pillow. Drowsy, I'm not sure about. I think of this as an environmentally-induced state, perhaps from medication, a boring speaker, or something I used to do a long time ago, in college, when I occasionally inhaled.

However I defined these terms, it all changed with my cancer diagnosis. I've said before that the body is consumed with a level of fatigue that's hard to describe. Cancer-related fatigue is different than other fatigue such as that experienced by new parents (though equally frustrating having now experienced both).  This fatigue lasts longer and sleep doesn't make it go away. For the first time in my adult life, and not as a result of a hangover, I've said "I need to lie down." In the middle of the day. I've not been able to muster the energy to do very simple things such as a crossword puzzle (which I used to do religiously). I read a blog recently written by a man who has been a cancer patient himself and also had a brother who died from cancer. When describing the fatigue that came with it he asked the readers to imagine themselves laying on the couch with their body turned inward toward the seat backing. The TV is on and something is clearly happening that is interesting. You're curious, but don't have the energy to turn over and face the TV to see what it is. That's what cancer-fatigue feels like, he wrote.

I hadn't experienced anything quite at that level until last week. I'd had a rough week with coughing, which led to increased pain, which led to increased dosages of morphine.  This meant I was feeling a lot of that environmentally-induced drowsiness I mentioned above. I found myself going to bed around 9 pm, sleeping right through until about 5 am, taking another pain pill and going back to sleep until sometimes 10 am. Because I am taking a slow-release pill in the morning, and then fast-acting pills for breakthrough pain every three hours, it meant I was also nodding off about every three hours.

I couldn't read text messages, return emails or even answer the phone because of energy I just didn't have. I went from my bed, to the couch, and back to my bed, for five days straight. By Friday, I'd had enough. I was sick of being tired so I forced myself to go out for lunch with my husband and do some simple errands. I came home and slept for two hours I was that worn out. You'd think I had just run a full marathon instead of my brother (yes, I proudly had to get that plug in for my bro---yay congrats on that again!).

The reason for cancer-fatigue is often linked to the treatment of the disease---it's a common side effect of radiation, chemotherapy and other medications, such as pain killers. But fatigue can also be a symptom of the cancer itself. According to the American Cancer Society this can be because cancer cells use up much of the body’s energy supply, or they may release substances that change the way the body makes energy from food. Whatever the cause, the result leaves me feeling annoyed and frustrated. I don't like having to say I'm tired all the time. I feel lazy when I can't even do simple chores around the house or outside and I feel useless as a contributor to my household and family.

People are sympathetic but I know they don't understand how I can be as tired as I am when I haven't done a single thing in five days. I barely understand it so I don't expect others to know unless they've gone through it themselves. So, if you are a cancer patient and know what I'm talking about feel free to comment on this blog. But if you're too tired to do that I totally understand. I'm not being facetious when I say feeling tired all the time is exhausting and sometimes it means not being able to do the things you want to do. Another thing to accept.

I decided I couldn't aide and abet my already cancer-fatigued body so on Sunday I stopped taking the fast-acting morphine for breakthrough pain. Yes, it meant dealing with a little more pain during the day but it also meant being able to make it through my niece's First Communion without falling asleep (I already felt like I was on the bad side of the priest so I didn't need to add to that) and being able to get back to work this week and start a new contract. Don't be quick to label me with martyr status quite yet though. The slow-release morphine which we increased in dosage is building up in my system meaning I have longer painless time periods during the day. I'll be going over my pain management plan with my doctor this week so we may add something into the mix that has less side effects. In the meantime, while interacting with me, if it seems like I'm more tired, fatigued or drowsy than usual, don't be offended. It's not you, it's me.

Until next time......carry on.


  1. Cindy, reading about your pain/tiredness makes me realize how fortunate I have been in my three bouts with cancer. I have never experienced pain and only after the last operation (with complications) did I experience tiredness. Thank you for the insight.


    1. Everyone's cancer experience is so different! I'm glad you are feeling well and have recovered from your experiences which you always handled with grace and dignity....such an inspiration and gives us all hope! I wish continued healing for you for many years to come <3. Take care.

    2. I struggle with the definition of these terms at every appt when asked to rate them on a scale of 1-10. (not sure I have ever been accurate) Your explanation helps to understand a bit more. Thanks. It took me a second reading to really catch your definition of "drowsy" during your college days - lol
      I am fortunate enough to not have experienced the tiredness, fatigue or pain to the extent that you have experienced. The tiredness does hit every now and then and I sometimes feel guilty for "lazing around", but then realize that the rest is needed in order for me to be able to carry on.
      Hoping that reviewing your meds leads to a combo that allows you to enjoy your days with minimal SEs
      Be well.

    3. Thank you, Barb. Every day is a challenge, isn't, navigating through the system and managing side effects. I wish you many more good days....we'll need to get together for a visit again soon!