Sometimes I think that people wonder what I do all day. I mainly think this when they ask “so what do you do all day?” No one is saying it in a challenging way, they just seem genuinely curious about how I kill spend my time. So I thought I would share a day in the life of me with ALS.
Monday
6am: Rob leaves for Chicago, and my assistant Marianela arrives. Otto is let outside. I’m awake, but exhausted. I decide to stay in bed longer even though it’s totally uncomfortable.
6:45: It was a good effort, but I can’t ignore the pain in my back and my feet anymore, so I call for Marianela. She lifts my head and my legs and swings me to the edge of the bed. Then she picks me up and puts me in my chair. I wheel to the bathroom, where she gives me my medication and puts my contacts in for me. We are trying to be quiet because, after a big weekend in Arizona, Scarlett is still sleeping.
7:15: Scarlett wakes up. She gets dressed, and I try to convince her to have breakfast. She eats three pieces of cereal.
7:45: Since Rob is out of town, I have to get Scarlett to school. The next almost-hour is spent in the car. Scarlett’s first music request is We Built This City.
9am: I drink tea through a straw. Marianela helps me eat a bowl of cereal. We split the work 50-50, she spoons and I chew.
9:30: I take a shower. ALS or no ALS, it’s nice to have someone wash your hair.
10:30-11:30: grocery shopping
12pm: I get on the BiPAP and try to rest. Marianela leaves for a break. Otto takes this opportunity to bark for 30 minutes straight. In the next door neighbors’ backyard, there is a toddler who he wants to be best friends with/eat. I love my dog, but this is not relaxing. Plus it’s super frustrating that there’s nothing I can do to shut him up.
12:30: I hate Otto. I fantasize about killing him.
12:35: I remember a yoga instructor I used to practice with in New York. He would say “Put a sweet smile on your face,” in his chirpy Tunisian accent, while torturing us with difficult poses. I put a sweet smile on my face and fantasize about killing Otto. Marianela returns and brings him into the house, where he falls to the floor in a heap of exhaustion. “You were really being a jerk,” I tell him, but he doesn’t care.
1pm: I eat lunch, or more accurately, lunch is fed to me. it’s not enjoyable, eating like this. It’s just something that you get through. After, I do stuff on my phone.
2:30: We leave to pick up Scarlett at school.
3:30: Swim class. Scarlett cuts through the pool as if she has fins. The teacher uses her as an example to show two older boys how to swim butterfly. Sometimes when she is supposed to sit and wait her turn, she spins somersaults in the water.
4:30: We go to my friend Renee’s for a visit. There are so few people whose homes I can access, but Renee lives in an elevator building. Scarlett plays with Renee’s three grandkids, and Renee spreads cheese on crackers for me.
6pm: Renee sends us home with beef brisket and potatoes. Scarlett wants chicken nuggets, but she eats the potatoes. After dinner she wants Marianela to read her two books. I smile because I can hear them giggling in Scarlett’s room.
7:45: We call Rob to say goodnight. He shows Scarlett how tall the buildings are outside his hotel. She crawls into bed and asks me to sing Samson by Regina Spektor.
8pm: I get back on the BiPAP and watch Grantchester. When it’s my turn to go to bed around 10, I need much more help than Scarlett needed. Cleaned up, tucked in, and extensively adjusted, I stare at the ceiling and wish for sleep.
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How do you get by with so little sleep? There is no way I could survive on only 8 hours, at least not over any long term.
“Three pieces of cereal.”
I can relate to that! My 3.5 year old drives me nuts.
I thought 8 was a lot! This might explain why I’m so tired.
Can you get grocery delivery? I fantasize that I’ll still be able to do all the shopping via Amazon, Blue Apron & grocery delivery when/if I’m down to my hands working. For now, I just make the shopping list and my husband goes and gets it.
I too am in awe that you only get 8 hours of sleep, but then I can roll over-ish. I need 9 to be active and not tired during the day, especially if I’m going a bunch of places like you did.
I’m making an effort not to be as much of a silent stalker… I do enjoy all your posts!
Hi! I don’t have to go grocery shopping, I just felt like doing it this week. Sometimes I can’t organize my brain enough to make a list.
Wishing you a deeper, longer sleep. Keep that naughty Otto inside when you are resting!
Sarah,
I truly enjoy reading your blogs. Some days it puts a smile on my face and some days it makes me sad. But that’s life right. I for one know what your dealing with. My son died this past November from ALS at the page of 42. It started out with a limp for him and in less than 2 months he couldn’t walk. In 6 months I had to bury him. I’m telling you this so people can be more aware of ALS.
Stay Strong Sarah
I’m so sorry for your loss, Phillip. Thank you for posting here. Hugs.
We have an elevator! We need to have you over.
I guess when you post day in a life posts you open yourself up to tips and questions about your life… feel free to roll your eyes and ignore this… I can SO relate to frustration with a dog you can’t control.. I know nobody needs one more gadget to keep track of but what saved me when I was stuck with two (finally) sleeping babies on my double nursing pillow and a dog who took that moment to bark his head off at the mailman EVERY DAY- a shock collar. There are two types- one with a remote control that you can push when your dog does something bad to jolt them back to their senses and one that buzzes whenever they bark- it has a sensor that goes on the dog’s throat and is activated by their vibrating vocal chords. Our dog is super skittish so we never moved past the vibration setting (like a phone vibration on their neck). But some dogs need a serious shock to stop their bad behavior. You can up the voltage
It helped us train our dog without terrorizing our newborns.
Hi Sarah,
I’m not exactly sure what to say. Normally people talk to me about ALS rather than the other way around. I was diagnosed in 2013, on my 20th birthday after a year of unexplained falls and weakness, like you.
How are you so approachable? People avoid me or talk down to me. They don’t usually let their kids near me. Also, does insurance help pay for your assistant? I live with my parents, and my mom is my primary caregiver, making her roughly as homebound as me, which can be inconvenient. I hope my questions aren’t invasive.
I hope you’re well!
Hi Alexis, I think it’s my daughter who makes me approachable. I’m usually with her at various classes or playgrounds and other kids get curious. Some of them just stare, of course, but I smile and say hi. You have a great smile, I can see from your blog. I’m going to go back and read more of your posts.
The caregiver piece is so hard. I have three different women who help during the week, and it does get pricey. I get some things covered by Medicare, and our insurance pays for my devices. Does your ALS clinic have a social worker who can talk to you about these things? Xo
I only got 4 hours sleep last night so I’m tired all the time, I have a nap in the afternoon. I have Bulbar onset