Wednesday, 30 December 2015


My shoulder muscles hurt today, both the left and right. They hurt from the work of adjusting my body in bed, picking up my legs in the shower, transferring, all of it. As usual. my left side is the worst, almost bad enough to cause me to reach for the Tylenol. I probably will fairly soon; it makes no sense to stay in pain in some silly belief that I am saving my body by not taking all kinds of drugs. My body is getting well on to useless. Preserving and protecting it makes little or no sense at all. In fact, I'm going to stop for a minute and go get some Tylenol right now.

Pain management is a big deal with this disease, something you don't find out about until you are well into it. I have a variety of pain medications, at all levels of toxicity, which I can use depending on the intensity of pain, type of pain, and duration of pain. Most of the time, it's just Tylenol. If things amp up, I've got some Tylenol 3 with Codeine. For targeted intramuscular pain relief, I've got Naproxin. When things get really serious, I've got some Oxycontin on standby.

Perhaps the best pain relief I've ever felt has been hospital administered intravenous morphine. That stuff gives you a really good ride. It's a shame that some people are allergic to it; it really works. I can also see how some people get addicted to it. Morphine does a lot more than take away pain; it takes away how you feel and puts you someplace else altogether.

The only kind of pain I don't have pills for is the emotional pain that goes with the constant loss associated with ALS. I have been in virtually continuous mourning since I was diagnosed, diminished by each day with this disease. It's hard to explain. Imagine have dozens of pets, each of whom was important, integral to your life. Now imagine that each week one of those creatures you love, one of those parts of you, dies. You just get over one when another leaves you, leaves you lessened, leaves you in pain, leaves you in mourning. That might be an inkling of what it feels like for me, as each day or week I notice another loss, another pain.

My doctors, and most who care for me, suggest I drink to much. Alcohol is a pain killer. It's not as good as morphine, but it takes me away from my pain, takes me someplace else. I am self-medicating. It's not the best approach, but it is an approach. I am coping as best I can, with the losses, with the physical pain, and with the emotional pain. I hurt way too much, way too often, in places the pills can't reach. In the end, there is no pain relief. I always sober up. The pills always wear off. There is always a new pain, a new loss. That's the way this disease works.


  1. When I was on intravenous morphine in the hospital not long ago, it really didn't take the pain away as much as it made me not really care about the pain anymore. Its a weird feeling!

  2. I'm a little less along the Motor Neuron Disease road than you. I appreciate your honest report of what things are like to slowly lose your function while trying to maintain some dignity and humour and exploring what this whole sh*t show. Way back in the beginning, when mild spasticity was my only issue, I indicated to my neurologist that I was worried about this or that drug being harmful to my liver or getting addicted. He sort of huffed a laugh and told me that was the least of my worries. Instead of being insulted at his callousness, I pretty much accepted it as a "fill your boots!" and allowed myself to rock whatever drugs he recommended. Although some of them didn't work, I have discovered a pretty decent night time cocktail the gets me through. I won't be around long enough for addiction to be an issue, and my quality of life is better for the chemicals while I'm still able to enjoy them. Not noble, not filled with grace, no battle won- but I'm comfortable and able to be present with my family. If morphine is what works, I say go for it. Sadly, it always made me really depressed. And constipated, truth be told.

    1. Given my comments in yesterday's blog post, constipation from opiods is not what I need. I just do what I can, and don't worry too much about the rest.