Charting fatigue levels

How is a gear stick related to your ET
fatigue? Read on to think about
developing your own way to gauge
and chart symptoms.

Has your hematologist ever asked how you've been feeling and you haven't been able to give a good answer? Or you tell her how you are feeling that particular day, but you have an idea that that's not really typical for you. Too many hematologists already think that ET patients don't have symptoms, and if you start hemming and hawing when asked about them, it can confirm this belief.

Charting symptoms like fatigue levels can be a good way to help you gauge what's average for you so that you can give the doctor better info. It can also help you spot patterns--times or triggers that make your symptoms worse.

To help me figure out a consistent way to gauge my fatigue, I devised a five-point scale based on the old "four on the floor" stick shifts I used to drive:

Park (Neutral). I spend most of the day parked in bed or on the sofa reading or watching TV. I don't get dressed, and even washing up or making a meal seems like too much. I don't do any exercise. I have brain fog most of the day and feel disorganized. Sometimes I feel like I'm getting sick.

ET and stress

Having comic relief in stressful times can

help you cope.

 There's a lot of talk about the role of stress in cancer. Teasing out how stress might trigger or worsen cancer involves a lot of Complicated Science, and no one really knows the extent to which stress affects patients like us.

Certainly we all feel worse when we're stressed out. And science has discovered a link between stress and some ailments such as psoriasis and migraine headaches. Stress also plays a role in platelet levels. My GP tested my platelets for a few months because I had been stressed out about a heart problem. But when they stayed high and went higher, she sent me to the hematologist, and that's when I got my ET diagnosis.

About six weeks ago, I saw firsthand how stress can increase ET symptoms when my mother died. I also officially retired a couple of weeks after that. And Mom named me as executor of her will. So for the past month and a half, I was busy getting her house ready for out-of-state family members, planning a funeral and making arrangements, talking to a lawyer, and trying to make sense out of Mom's estate.