Last night, when I was wide awake at 2 AM, it occurred to me that I’ve never written about an actual day. That is, the day-to-day minutia of my life. So here goes …
8:20 AM. I’ve been awake since 7 AM. Workers are 20 minutes late. So much for being a morning person.
BATHROOM BREAK (allow 15 minutes)
(Notes: The worker is a rookie. She moves at a snails pace when she fixes my peanut butter and banana on an English muffin toasted on setting #4. (I hate burned toast. And, I’m a control freak.) Earl Grey tea, cranberry juice. It takes her forever to slice the banana into little rounds. It’s almost 9 AM when she leaves.)
9 AM – Drug mule arrives with 2 Baclofen, one Synthroid, 1 Metoprolol, 1 Fampyra and 1 Oxybutynin.
915 to 9:30 AM – Brush teeth, take 2000 IUs of vitamin D.
(Notes: Today’s a shower day! Hooray for the miracle of hot water and soap. It brings me back to life when I feel grubby and greasy. I shower three times a week, at 11:30 AM on Monday, Wednesday and Friday. Sometimes the “team” – yes, it takes two women to shower me – often arrives early so I pick out my clean clothing as soon as possible. Today, I’ll be rocking the outfit I call, “lemon meringue pie:” brown leather sandals – the crust, yellow shorts – the filling, and a white halter top – the meringue. I wear socks with sandals. When I was younger I wouldn’t be caught dead in this combo, but I make a concession now to protect my feet.)
10:10 AM – I just finished writing this so far. Now I’ll switch to my other laptop to check my email. I’m still working between two laptops. It’s going to be a rather busy day.
11 AM – BATHROOM BREAK (30 minutes).
1120 to 12 noon – SHOWER
(Notes: The shower ladies are ahead of schedule – happy days – so I’m showered, dried off, dressed in good time. I use my blow dryer and some mousse, hairspray, MetroGel for rosacea, moisturizer. It’s hard for me to do fiddly things with my hands but I manage somehow. I know the day will come when someone will have to do this for me.)
12 noon – Drug mule arrives with 2 baclofen.
12:40 PM – Dining room for lunch. I forget that I’m supposed to go down and actually wait in my room for a little bit for them to bring lunch to me, so I go down later than usual. Tuscan soup and a toasted Western sandwich, vanilla ice cream with chocolate sauce, ice water.
130 to 2 PM-ish – BATHROOM BREAK (20 minutes).
2 PM – Lay down for a rest. Restorative Care member arrives for passive stretching of legs and arms.
3 PM – Get up earlier than usual because of appointment for second Covid shot. Pfizer again.
330 to 4:30 PM – I’m at the pharmacy getting registered, jabbed, observed for 15 minutes (took advantage of time to go shopping.)
430 to 5:15 PM – BATHROOM BREAK (45 minutes. It’s a busy time of day.)
4:45 PM – Drug mule arrives with 2 more Baclofen, while I’m in the bathroom. Privacy? What’s that?
530 to 6:30 PM – Eat supper in room. Tandoori chicken leg, oven roasted potatoes, sliced carrots, spinach, bread-and-butter pudding, ice water, while listening to Tina Fey’s Bossypants (hilarious).
630 to 7 PM – BATHROOM BREAK (30 minutes)
(Notes: I feel worn out from busy day, lack of proper rest, hot weather – 35° with humidex – and effects of Covid jab. Normal bedtime is 930. I don’t want to feel like crap later, so I make arrangements with worker to go to bed early. Only time she can do it is 815. That’s very early But I go for it.)
7 to 8:15 PM – Mad scramble to get everything done: print out shopping list for tomorrow; tidy loose papers on desk; eat snack – yogurt, half a banana, handful of cashews; brush teeth; wash face.
8:15 to 8:45 PM – In bed watching TV until drug mule arrives with bedtime cocktail: 4 Nortriptyline, 3 Baclofen, 2 Remeron, 2 Cymbalta, 1 Metoprolol, 1 Oxybutynin, 1 Dantrium, 1 Fampyra, and a partridge in a pear tree.
(Notes: I am horrified by this list. It includes meds for my blood pressure, bladder and neuropathic pain relief, two muscle relaxants, and two antidepressants. It didn’t happen all at once, but gradually over 20 years or so, the result of three health issues: congenital heart disease, MS and depression. It began with blood pressure meds in my early 40s, then a muscle relaxant and it went downhill from there. Four of those drugs I only take a bedtime. Baclofen is the only one I take throughout the day. The irony is that I still debate whether a headache is bad enough to take a single Advil.)
9:30 PM – Already groggy, I turn my lamp off and sleep. The next time I check, it’s 6:15 AM and I feel great. I rarely sleep all night like this.
Here’s how my day measures up:
BATHROOM BREAKS: 5 (that’s very low, I must’ve missed some)
MINUTES WAITING related to bathroom breaks: 140 minutes or 2.33 hours
PILLS SWALLOWED: 25, plus 1 Advil = 26
(Notes: A thoroughly scientific study should include a discussion of the findings. There is nothing thorough or scientific about this, but I think I will make some observations and draw some conclusions later. I will keep a running log of what I do all day again, but I’ll pick a random day that’s more typical.)