 |
| How is a gear stick related to your ET fatigue? Read on to think about developing your own way to gauge and chart symptoms. |
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.
First Gear. I don't get washed and dressed until after noon. I do one or two light chores--wash dishes, make a meal, or clean the bathroom sink. I manage about 15 minutes on my exercise bike. I have intermittent brain fog through the day. I might have flu-like symptoms in the evening.
Second Gear. After a late morning start, I get washed and dressed around lunch time. I manage to tackle most of the things on my to-do list. I do all 30 minutes on my bike and get through my physical therapy exercises. Little to no brain fog, but energy gives out after supper. Able to do normal activities for four to six hours.
Third Gear. I am up and around before noon, finish everything on my to-do list. Bike, physical therapy. No brain fog. Able to do normal activities for six to eight hours. (Note: this is where I would have to be every day in order to hold down a full-time job.)
High Gear! I am up and moving at the time most people are getting ready for work. I finish everything on my to-do list, and I feel energized enough to do an extra project. Bike, physical therapy, extra walk. No brain fog. No feelings of fatigue.
The point of this scale isn't to impress yourself with clever metaphors, of course, but to have a few measurable and observable criteria that are indicators of fatigue. That way, you're looking at the same criteria every day, making comparisons easier. (Note: Just to continue the car analogy--it's also helpful not to waste time feeling bad about what you used to be able to accomplish. I am 64. If I were a '54 Chevy Bel Air, you'd expect a few dings and and transmission glitches.)
Most days, I am in Second or Third Gear. That means I get where I want to be, but it's a little slow going. I am rarely in High Gear, and on days when it's necessary to push myself to function at that level, I am in Park or First Gear the next day.
A whole week in Second Gear is not normal for me, and that pattern would make me more mindful of taking care of myself--lowering stress, getting more sleep, being careful about junk food, making sure I'm drinking water, getting fresh air, etc.
A stretch of more than a few days in Park would send me to the doctor.
Besides helping you you better answer the doctor's questions about fatigue and stamina, this kind of system might also prevent you from spending too much time self-monitoring. Jot your gear (number, letter, icon--whatever rating system you use) on your calendar at the end of the day. Then get on with your life.
Wishing you a good day in High Gear soon. Meantime, be well! (Updated November 11, 2018)
Related: What ET fatigue feels like
Was kind of glad to stumble across this website. I was diagnosed with ET back in Nov 2017. My platelet count was 1700, and the hematologist put me on 1000mg of Hydroxyurea per day.
ReplyDeleteSince the count wasn't coming down as quickly as he'd hoped, he has bumped up the Hydroxyurea to 2000mg per day. I have been experiencing extreme fatigue, but every month when I get the latest blood work results, I'm told that the ET nor the medication should have anything to do with the fatigue.
It's nice to read some of the info on here, and see that the fatigue isn't just in my head.
Thanks.
I'm glad you found us! No the fatigue is not in your head. My doc doesn't think ET causes fatigue, either, and this seems to be a very common misconception among hematologists. It drives me around the bend, especially since fatigue is well-documents and the most common complaint. Both the ET and high doses of HU are going to make you tired. I do chart my fatigue even though the doc doesn't ask about it. Are your platelets coming down? 1,700 is pretty high.
DeleteHi Jean. Yes, the platelet count is coming down. I had the bone marrow biopsy, and started on HU back in Nov '17. In 3 of the blood tests leading up to this, the platelet counts were 1500, 1500, and 1700. My last blood test last week had the count at 728. So it is improving.
ReplyDeleteGlad to hear it. HU can do weird things to your other counts--and make fatigue worse. I have no real symptoms from the HU, but am only in 500 mg a day. In fact, I felt better the first month when platelets went down 150 points. Now they seem stalled in the 600s, and a couple of other counts are slightly screwy. Some docs prescribe vitamin B12 and iron. My hemo's nurse told me I might try a multivit, so I'm taking one to see if I it has any effect. Some patients say you just pee away the oral vitamins. They take shots or tablets under the tongue. So much conflicting advice ...
DeleteYeah I hear you. Back when I started on HU, my white blood cell count was 19 (19000). As of the most recent monthly blood test, it had just snuck into the normal range at 10.8. Looking forward to when the platelet count will be under 400. Hopefully the hematologist can start scaling back the HU. Been working on dropping some weight, improving the diet, cutting back on sugars as much as possible. Anything else you hear via the grapevine that helps to bring the platelet count down? I would really rather not have him bump up the dosage of HU again to 2500mg a day.
ReplyDeleteApologies for not getting your comment posted! I must have missed the notice in my in box. I share your concern about ever increasing doses of HU. Maybe ask your doc what he's willing to live with as a target number? If you are CALR, your doc may be satisfied with something above "normal." Or ask to try a different drug.
DeleteSadly no alternatives that have been tested and vetted. If your platelets are going up due to stress, reducing that can help. But how to reduce stress is kind of elusive to me!