From @Learner1 's markers
- Total hours of sleep in 24 hours - 9
- Number/hours of naps per day - 2.5-5hrs non-sleep meditative rests. Occasionally 20 min sleeps up to twice a day. Rarely sleep more in the day, 1hr if it happens.
- Ability to sleep through the night with quality sleep - rarely sleep through the night; wake up 2 times in night on average; can fall back asleep quickly.
- Ability to read an article or focus on a TV program or a tedious task at work - normally too difficult to read a proper article; can do light social media. TV programmes need to be paused normally every 20mins but sometimes it is possible to get through a 1hr programme on a good day. Not working.
- Ability to write a business letter for report or help a child with homework - I wrote a business email last week on a good day, and consequently got a headache that lasted from early evening til the next day. Not keen to repeat soon.
- Ability to plan and execute a multi step task.- struggle - I do attempt this from time to time and it causes a lot of stress, even when someone is helping me. It's definitely easier to just do one thing at a time and work out the next step from there. I get fixated on trying to work out the next step and trying to hold it in my mind - trying really hard because it's so difficult.
- Ability to stand in a grocery line or talking to someone without passing out - knees hurt and back hurts. Have to rest before and after. Sometimes, talking to someone briefly can give me energy.
- Hours of work per week - 0
- Hours of treatment per week - 0
- Ability to walk and distance walking, or confined to a wheelchair - on occasion can walk down the street slowly. Every 3-4 days walk a v short distance to bus stop, can walk around supermarket with a sitting down rest, and back. Then need to rest for a few days. Prohibited from leaving the house to get food because normally unable to handle the walk to the bus stop. Looking into getting a wheelchair.
- Minutes of non-aerobic exercise per week - 70 - 5 mins yoga twice a day.
- Minutes of aerobic exercise per week - 0
- Ability to exercise without multiple naps during the session - 0
- Hours of PEM per week - pretty much constant. Gets better after several days rest and sometimes in evenings I get some respite.
- Ability to drive and do errands - many errands/tasks I have to do have been delayed for weeks. Don't drive.
- Ability to sit through a meal - eating alone is easier. Difficult to socialise and eat too, but I do it once or twice a week. Only occasionally need to have a break from eating because the moving is too hard.
- Hours of social activity with family - n/a
- Hours of social activity with others - I do 2hr every 5-7 days, but this is not manageable - it's very draining, but I crave seeing my friends. Additionally I have 10min chunks of contact with housemates 2/3 times a day - normally not proper conversation, just very light contact.
- Ability to cook, do laundry, vacuum, take out trash, mow lawn, etc. - cooking batches of food maybe once a week, avoiding requiring a lot of chopping. Prone to kitchen mishaps. Laundry and vacuuming gets put off a lot. Mowing lawn is out of the question.
- Ability to take a vacation normally, without compromises - 20 min bus rides are normally too hard, so a holiday isn't going to happen for me for a while.
Likes:
Sidny