A (Nearly) Complete List of What I Do to Get Through the Day
Last updated: February 2023
Have you ever stopped to think about what you do, in detail, to get yourself through the day and night? I decided to write it all out, everything I do from the time I get out of bed in the morning until I climb back in at night. I want to share it with you as a kind of reality check (for me), as well as a point of comparison that you might find useful. As always, personal medication decisions and changes should be discussed with your doctor.
I am also very curious about your routines and would love to hear about what you do and how you accomplish it day after day.
My daily life with MS
I’m going to start with my evening routine. So, here goes:
6-8 pm: Stop eating for the day at 6 o'clock. Dinner is either a small meal or snack.
Take evening meds:
- 2 – 20 mg baclofen (for muscle spasticity), plus 1 – 10 mg baclofen
- 1 – valacyclovir (anti-viral for herpes)
- 1 - Tecfidera (oral disease-modifying drug) with food
- 1 – dalfampridine (formerly Ampyra; increases walking speed)
- 1 – cetirizine (Zyrtec) (for nasal allergies)
- 2 – KLOR-CON (potassium chloride) (treats potassium deficiency caused by water pill)
- 1 – krill oil (omega-3 fatty acid)
- 1 – lutein (a carotenoid related to vitamin A and beta-carotene to slow progress of macular degeneration)
- 3 – gabapentin, 100 mg caps (treats neuropathic pain)
8– 10 pm:
- Sit with heating pad on spastic hips and lower back for one hour. Then apply electrodes of TENS unit pulsing electrical therapy to those areas for 30 minutes.
- Be sure to get up and move around every 20 minutes.
- Do whatever dishes remain in the sink.
- Take evening shower, shampoo and blow-dry hair.
- Listen to music, watch ROKU, talk/text, entertain neighbors who pop in.
11:30 pm – 1 am:
- Fill CPAP machine reservoir with distilled water.
- Brush teeth.
- Get in bed, position CPAP mask on face and Press 'ON' button. Adjust for leaks.
- Go to sleep. If sleep doesn’t come, relax and rest quietly. Do not get out of bed unless it is to use the bathroom.
7-9 am: Take off CPAP mask, hit 'OFF' button, and empty what is left of the water in the CPAP machine reservoir.
Pee, brush teeth.
Take morning meds:
- 2 – 20 mg baclofen, 1 – 10 mg baclofen
- 1 – Tecfidera with food, usually an apple and banana, and a cup of coffee
- 2 – potassium chloride 10 mg tabs
- 3 – gabapentin, 100 mg caps
- 1 – vitamin B complex with C
- 1 – vitamin D-3, 5000 units
- 1 – lisinopril, 10 mg for high blood pressure, taken with furosemide
- 1 – lovastatin, 40 mg for high cholesterol
- 1 – furosemide (Lasix, water pill) for high blood pressure and fluid retention
- 1 – omeprazole (Prilosec) for acid reflux
- 1 – dalfampridine (formerly Ampyra, the walking drug)
9 am – 1 pm: Work online.
1 – 5 pm:
- Eat small meal during early afternoon.
- Online research, both work- and pleasure-related.
- 3 pm - Take another 40 mg of baclofen.
- Walk down to mailbox, socialize with neighbors.
- Answer and send texts and emails.
- Read books and articles for pleasure and work.
- Do calf stretches and piriformis stretches if these areas are stiff or crampy.
- Get up from computer chair every 20 minutes and busy myself to maintain circulation and strength.
- Check fitness tracker watch throughout day and evening. Taking 3800 steps is my daily target.
- 5 pm - get off computer, turn on music or ROKU, pour a Scotch whiskey. Relax for an hour. Eat a snack or very small meal.
6 pm to bedtime: See evening routine at the beginning of the article.
*This is a 7-days-a-week schedule.
Occassional events added to my routine
Additional ongoing events occur each month, such as:
- Working with a friend on a design project
- Lunch dates with friends and family
- Helping neighbors with computer and printing needs
- Helping/working with colleagues on various projects
A few other notes:
- I walk with a cane. Indoors I do not use a cane - wall-walking and grabbing furniture instead, as needed.
- As of December 21st 2021, I am without a car. Friends and family give me rides to the store and pharmacy as needed.
- Despite being stranded, I manage to accumulate between 2100 and 4100 steps a day.
Assessing my daily accomplishments
It is, by any estimation, a busy and productive day. It feels that way to me too. It flies by, and by early evening I hear a little voice inside me that I didn’t accomplish anything. But I have trained myself to review all my accomplishments for the day. It silences that self-critical voice with facts. I have high expectations of myself, and that is not a bad thing. It's just that there are trap doors one can fall through very easily, and to no good end. A sense of accomplishment is more important than the accomplishment itself. It gives me credit for doing the thing no matter the outcome.
What is your day like? Are you content with it? What changes would you like to make? Do tell!
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: