It’s August 8th, Severe ME Awareness Day, and I’d like to describe 6 out of 7 days of the week in my life living with Severe ME. This was a Twitter thread 30 tweets long before adapting it for Medium with more proper grammar.
I wake up somewhere between 1 pm and 3 pm unless I have a medical appointment earlier than that. I get out of bed to use the bathroom. Before I get back in bed, I change out of my pajamas into one of my soft, comfortable dresses with nothing on underneath due to skin issues.
If my husband has realized that I’m awake, he’ll usually arrive upstairs with the breakfast he’s heated up for me (homemade and packed with whole grains) and a drink from my fridge if the bottles are still in the plastic rings and couldn’t get one for myself. Or if the cans/bottles are too far in the back for me to reach. Or if he just has to open it for me because my hands aren’t strong enough.
I get back in bed, my husband hands me my breakfast, plugs my phone back in for me, and lifts my lap desk and laptop up to place them on my lap for me. He goes back downstairs to work while I do stuff on my laptop & phone. He comes up to nap on his lunch break & gives me my “morning” meds.
I do not have enough executive function to remember to take my meds on my own, and even if I did, sometimes I have a hard time getting my pills from my organizer in one hand and my drink in the other unassisted. These meds cause withdrawal fast if I forget, so it’s best not to forget them!
I wake my husband up from his nap when it’s time for him to go back to work. He gets me another drink before he leaves, and I go back to whatever I was doing. Lately, it’s creating artwork on Midjourney and uploading it to Ko-Fi and Redbubble. Sometimes I have paid work, but not often.
By the time my husband finishes work at 6 pm, I’m finally feeling “awake” and at my best mentally, but it’s time for dinner. Because I have to eat in bed as well, he usually cuts up my food for me because it’s just too awkward without a solid table in front of me.
Eating can take a lot of energy, depending on what food it is. Too much chewing can be hard, or having to hold food up without setting it down because it’s precarious (like tacos). We usually turn on the TV after dinner, and it’s often the only activity I’m good for.
Sometime between 8 pm and 10 pm, I get out of bed to start getting ready for my bath. It’s not just a bath. It’s a hot Epsom salt soak to relieve pain and tension in my body. It started out as a 20-minute thing years ago, but now it’s over an hour long. I don’t know why, it just is.
It takes me ~15 minutes to prepare for my bath, including using the toilet. I used to run my own bath, but my body doesn’t move the way it used to, so now my husband gets it started, adds the salt, and mixes it in before I get into the tub as it fills.
It’s harder to get into (and out of) the bath than it used to be, due to tub size not increasing as the weight gain from taking Seroquel for over a year made my size increase. Because it gets hot in there, my husband makes me a frozen drink every night to keep me cool.
The slushy started out as just frozen strawberries and 100% juice cranberry juice, but we’ve mixed and matched additional frozen fruits and 100% juices for variety. Pineapple, orange, grape, cherries, etc. It’s one of the ways I ensure I get enough fiber in my diet.
The end of my bath is only the beginning of a more difficult process: getting out. I stay seated after letting the water out in order to wash most of my body and — every other night — my hair. I can wash my own hair most days, but my husband does it because it just feels good.
Oh, I forgot that I wash my face before I wash anything else. I get very sweaty and otherwise salty from the evaporation of the bathwater. Rinsing off is…a whole thing.
It’s painful for me, the process of standing up in the tub. I have to get my feet braced against a certain part of the tub wall. I have to put both hands on the grab bar in order to pull myself up — with my husband’s help. But sometimes just getting into position takes forever.
I have a finger flap and corresponding “toe flap” that are symmetrical stims/tics. Once they get started, they don’t stop until they’re good and ready, even when my fingers and toes are cramping from it. This is a common disruption in the standing-up process, as are other random pains, muscle spasms, etc. I have a terrible sense of time, but it can take 10 minutes or so between me trying to stand up and me actually standing up. And I always hurt something during the process of standing. Usually an arm, but can be my hip, abs, groin, etc. A pulled muscle or “blunt force” allodynia from where part of me leans heavily against the grab bar or other parts of the tub.
Once I’m finally standing in the shower, I can wash the parts I couldn’t get to while seated, and it hurts as I try to reach places. A new med helped me with the dizziness from POTS, but it’s still an effort to remain standing to rinse off properly. I often go nonspeaking and sometimes completely nonverbal while I’m trying to cope with pain or need to make an effort of will to make my body move the way it needs to move. It was much worse before I started on fludrocortisone. Then there’s getting out of the tub completely to dry off.
Again, this was a more complicated process just last month before I started the new POTS meds, but my husband helps me step out of the top and spots me while I dry myself off with my towel. I’m still unsteady because of my neuropathies, but most nights I’m getting my slippers on with just one hand braced against the wall or my husband for support.
If it’s a “good night,” I can walk back to get myself in bed without help. If it’s not, my husband helps me “conga” out of the bathroom with my hands on his shoulders as he leads me. I lean on the bed’s footboard as soon as it’s within reach because it’s lower, so I don’t have to expend energy keeping my arms raised around his shoulders.
I remain naked to air dry for a good hour or two, possibly more, because I sweat a lot, and putting my pajamas on too soon causes moisture-related issues of varying severity. 😬
OH. I forgot about my bathtime meds. That’s when I get my THC, which I avoid during daytime hours in case I need to have a clear head to drive or something. (Driving is exhausting, but I can do it for short distances when necessary. Sparingly. Like when I’ve had to take my husband to emergent care for his heart condition.) Sometimes the THC makes me high; sometimes it doesn’t even get to all my pain, so no subjective effects.
So back in bed, naked, exhausted, possibly nonspeaking, sweaty, and potentially high, I’m useless for anything but entertainment. We watch TV until my husband goes to bed. He has to work a day job whether or not my body is ready for sleep. He’s usually snoring within minutes of his head hitting the pillow.
Meanwhile, I can’t settle down before 3 am, sometimes later. Literally, I’ve tried going to bed earlier, but I just lie awake, miserable, despite all of the sleep meds and other depressants I take at night. My internal clock is what it is.
So I putz around on my phone and/or computer — though I try to finish up on my laptop so it’s not something I have to place on the floor myself, something that has gone badly more than once — until my brain gives me the go-ahead to lie down and sleep.
So, at any time between 3 am and 7 am, I gently wake my husband to snuggle with me — per his request — so we get our snuggles in until one or both of us needs to roll over. That’s when sleep finally happens. And why I wake up after noon most days. It’s my body’s internal clock.
So this has been a very long post about Severe ME/CFS. You’re probably wondering why I spent so many characters describing my bath routine. That’s because it’s the most arduous part of my day unless I’ve left the house.
Bath. Arduous. Yes. That’s why I’m bedbound.
If I were to try to describe the day I do my aquatic exercises at the Y, this thread would be 100+ tweets/thousands of words long. Every transition, every action is something I have to intentionally expend effort on. So I described the rest of the days of the week instead. Lower energy cost for me.
So this is my life with Severe ME. And it’s taken me over an hour* to type up because of the mental energy to compose the words and the physical energy to type them.
(* Another hour to format it for Medium.)
I (we) deserve grace.
Just sitting upright is an event.
Solidarity to my fellow Severe ME/CFS folks.
