2:00 wake up; hard to get back to sleep because my hips and shoulders hurt, and my ribs won’t let me lay on my left side, and my airway collapse won’t let me lay on my back.

06:30 wake up for real, get out of bed slowly to avoid lightheadedness from POTS; feet go into Haflinger wool clogs with cork footbeds and arch support to avoid injuring my feet; pee (I’ll pee again 5-10 times before noon while struggling to get my electrolytes stabilized)

06:40 drink 1 cup of coffee sitting in my recliner with my feet up (to minimize blood pooling in legs)

07:30 shower sitting down on a shower stool to avoid lightheadedness. Legs and feet turn purple anyway, then toes go white from Reynauld’s

07:45 fight to put on thigh high compression stockings to minimize POTS symptoms, making sure not to dislocate thumbs in the process of getting the stockings on, then rest on the bed for 5 minutes to recover while deciding if I need neoprene ankle sleeves for support. Finish getting dressed, including Salomon sneakers with custom orthotics (the flared soles of the sneakers minimize how many times I’ll roll my ankle during the day)

08:00 put vitamins and meds in a dollop of applesauce since swallowing pills can be tricky due to dysphagia and trouble coordinating the muscle sequence to swallow; follow this with cold cereal for breakfast, being careful to chew on only my right molars because my “newly” crowned tooth is unbearably sensitive to pressure and something isn’t right in my bite but I can’t bear to go back to the dentist and have another procedure done without anesthesia

08:10 pack lunch, including a 30oz tumbler of ice water + electrolyte powder (I like Liquid IV), being careful not to dislocate a finger while cutting an apple

08:30 drive to work

9:00-10:00 meeting at work; I shift positions in my chair about every 5 minutes to keep the pressure off my tailbone, and to tilt my head in a different direction so my neck doesn’t get too stiff or tense. Usually my head is in my hand, elbow on the desk. Hope meeting ends soon because I need to pee again!

Work goes by in a blur; my main goal is to avoid prolonged standing because it makes me incredibly tired. Prolonged sitting is also bad for my tailbone, back, neck and head. Luckily I have a high amount of autonomy in my job, so I can mix up my activities to avoid any one thing for too long. If I stop moving for too long, the fatigue will sink down on me like a wet blanket and the brain fog will set in. I routinely get about 8,000 steps in at work.

Every time I move or stand something new hurts, and I have to plan out my strategy for opening the doors at work since the auto-close pneumatics require so much force to pull them open. I have an incredibly fussy ergonomic setup at my desk at work to keep from hurting my neck, back, wrists, finger, or eyes.

17:00 drive home

17:30 walk the dog around the block, hobbling because my feet, ankle, toes, hips, or SI joint are in pain. Start a second 30 oz tumbler of water.

17:45 too tired to cook dinner; hope there are some leftovers or a pizza in the freezer. I am beyond “out of spoons” (a chronic illness metaphor for limited energy originated by Christine Miserandino: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ )

18:00 eat dinner in my recliner so I can have my feet up to ease the discomfort of varicose veins, and so I can put my head back and not have to support the weight of my head on my neck as much. Relaxing and finally being still make me realize how much my feet and legs are buzzing/burning (I think this is from small fiber neuropathy, but I’m not sure) and how incredibly tired I am

19:15 eat dessert, if I’m going to have any. I need to finish eating 2-3 hours before I lay down to minimize my chances of aspirating stomach acid in my sleep (oh how I miss the days when I just had nighttime heartburn that woke me up)

I usually spend evenings in my recliner. If my brain fog isn’t too bad I might read or listen to an audiobook, but I’m often too tired to concentrate on reading, so I will watch TV. I might knit or spin yarn while relaxing, but sometimes my hands hurt too much to do that.

21:00 take magnesium for restless legs and my nighttime meds

21:30 stir and scoop the cat litter, trying to avoid grip-of-death on the scoop (I can’t tell how hard I’m gripping, so I tend to over-grip)

21:35 soak TMJ disorder nightgaurd in hot water while I floss and brush my teeth. Have to use hot water to rinse because my “newly” crowned tooth is so sensitive to temperature that I can’t use regular tap water

21:45 fight to get my compression stockings off, change into PJs, and slather lotion or topical NSAID onto my legs to try and help the maddening itching (I think from nerve damage), then fall into bed, grateful to be horizontal. Wrestle all my support pillows into place to minimize the injuries from sleeping. Then the hot-cold-hot-cold cycle starts and I throw off blankets, then pull them back on. I’ve actually been doing that all day long with sweaters and scarves, but it’s more annoying in bed when I’m trying to fall asleep.

22:00 fast asleep

23:30 wake up choking on aspirated stomach acid. Reshuffle my support pillows so I can mostly sit up in bed and hope I can doze off. It’s hard to sleep sitting up or on my back because my head lolls around on my neck too much

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