I Need A Rest

Fatigue is one of the most common effects of ALS. PALS I know consistently report needing to sleep more, feeling tired and exhausted all the time. I get this way too, that feeling of constant weariness. If you watch me carefully, particularly early in my day and late at night, you will see the signs of it. My body moves more slowly, it takes me longer to form a sentence or I use short sentences, my voice volume drops and my tone gets dull and flat, I sigh.

There are other elements of this fatigue, things like anxiety, crying, and a general loss of caring about things in life, including a loss of care about how I look or dress, forgetfulness and my increasing self-isolation. I become more about "why bother", and less about living life. All of these elements make up the fatigue that defines much of my waking day.

ALS is ever the great imitator; one could think I was clinically depressed. Certainly the symptoms are similar and if anyone has a reason to be depressed, it's an ALS patient. If you think about it, this fatigue is a kind of depression, one where ALS depresses my general strength and ability to deal with things, not my spirit or mental wellness. This deepening well of tiredness need not define my life completely. I can do some things to manage it; other things I just have to live with.

First and foremost, I need to sleep more, and I do. These days I get out of bed at around 10:30 AM or even later. One of the good things about no longer having a regular workday is that I don't have to get up in the mornings. And I can go to bed when I get tired; I don't have to be up for a certain time at night. These days I sleep somewhere between 10 and 12 hours a day; many PALS tell me they sleep even more than that, napping in their wheelchairs during the day. We just need our rest.

The next thing I do is pace myself. If I have a big task, or a big evening out, I make sure I get plenty of rest beforehand, and plenty afterwards. When I am in the midst of something I will often stop to rest, doing something else for a bit or more likely just sitting still and allowing my body to recover. If something makes me tired, I stop. Then, when I feel better, I start again. It's a simple approach that works.

Stress is another big challenge for exhaustion. What wears me out emotionally wears me out physically. So I try to avoid stressful situations or places with emotional conflict. I simply don't have the strength for it. I watch myself; when I get emotionally stressed I snap, lashing out at those around me, unkind and seemingly ungrateful. When this happens, please know that it's not me, it's the disease and the exhaustion.

So I got up at 10:30 this morning. I used the toilet, had a shower, shaved, and brushed my teeth. When I got out of the bathroom, an exhausting exercise on its own, I looked at the clothes laid out on my bed and said to myself "why bother". I have yet to dress but I will get there. First, I need a rest.