A Day in My Nice Life
The sun was high overhead but the ocean was cool and calm. I adjusted my snorkeling goggles and looked down at gorgeous shells and fish beneath me in the aquamarine waters. It was amazing. I swam to shore and walked up the beach to where my friend was sunning himself. I took my towel and dried myself off. I’d been working out hard at the gym and I was feeling good about the results.
“Bored with the beach today? We can go look through the town and find some treasures if you’d like,” Gerry said. It sounded good to me. We changed in the beach bathhouse, then hopped on his motorcycle and drove up the steep hill, gently winding our way through the white plaster houses with terracotta rooftops. The Mediterranean was always there just beyond.
We stopped at a local antique store, one of many, and I went looking for blown glass, my favorite. “How do you like this one?” Gerry asked, holding up an exquisite cobalt dolphin. I leaned in to look at it. It was breathtaking. Gerry took the opportunity to lean in close to me, then started licking my hair…wait…what the…he started licking my eyelids…ouch! What…ack!…
I woke up. My cat was on top of me, grooming me. If you’ve never had a cat lick on your eyelids, be happy. It’s like sandpaper.
I wish I could claim my dream – at least most of it – as how a day in my life goes. But it’s not. I still like it, though.
I am Michelle and I’ve got stage three COPD with some symptoms of stage four. I was diagnosed four years ago and since then I’ve learned how to navigate my illness and its quirks to make sure I have the best days possible. It’s not what it used to be, where I actually did travel and swim and ride the occasional motorcycle, but it’s still good. It’s a calm, slow, peaceful life. And that’s just fine.
For me, my day revolves around caring for or preventing my fatigue. I have to think before I do anything about whether it will make me too tired to do something else I need to do. I have to know when I’ll have time to rest and when I won’t. I have to rest every day.
I hope this article doesn’t make you sleepy.
I wake up when I wake up. I don’t use an alarm. I can’t work and my son is old enough to get himself ready for school, so there’s no need to. It’s much more restful that way, which is good with this disease. If I’m in an exacerbation or not feeling well, I stay in bed and read and rest for the day. I’m lucky to have a husband and son who will take care of me.
Feeling well, though, I clear my throat, and my head, take my morning meds and wander out to say good morning to my husband. He’s always up before I am, and he always has my coffee ready and waiting for me. He’s a good man.
I’m very glamorous. I can usually manage a bath every other day or second day. Bathing always put me in a flareup where I need a rescue inhaler to breathe. It also takes a lot of energy so I don’t do it every day. There are other things more important most days and I only have a small bit of energy. As a COPD patient, I have to think about these things.
Since I’m so glamorous, I have several pairs of pj’s and lounging pants, to go along with my myriad t-shirts and sweatshirts, depending on the season. These days I’m all about comfort. I’m sure my picture is on the website People of Walmart. More than once.
If I have a doctor’s appointment or a physical therapy appointment or have to go shopping or anything, I am careful to rest until it’s time to go. Going anywhere is very tiring. I have to be careful not to schedule more than one thing a day and I need to space them out several days in between so I don’t get sick.
If there are any errands to do and I’m up to coming along, my husband will drive. I don’t drive much anymore, which I miss. My favorite thing is going to the grocery store. There’s just something so comforting about being around all that food. I like to eat healthy but sometimes you just crave those fake little chocolate donuts or the spray cheese that comes in a can.
I have to use an electric wheelchair in the big stores so if we just need an item or two my husband will go in and grab them and I’ll stay in the car. It can be a bother to find a scooter or to bring and unload and load my electric wheelchair. We have to think of these things before we leave the house. We always have to plan ahead.
If I don’t have anywhere I need to go on a given day and I feel good I’ll devote some time to my favorite hobby, photography. Photography gives me purpose, something to look forward to, and something nice to share with other people. I’m always learning more and more so it keeps my brain occupied. In short, it makes me happy.
So I’ll walk out to the garden or sit on my porch next to the flower beds. And I’ll take pictures of the flowers or the grass or whatever catches my eye. Most times I’ll wait and rest until a bee or a butterfly wanders by and I can capture its beauty through my lens. If I’m not feeling well, I’ll sit at my window and look out on the serenity grove we’ve made and take pictures of the birds that visit the feeders. I can’t walk far to get my photos, and I can’t take long to do it, but if there’s a chance I’m up for it, you’ll find me behind my camera.
I love my hobby, but it also takes a lot of energy. I have to have time to rest afterwards. If I feel tired already from doing something, I know I’ll need to wait until another day for photographs. Sometimes I’m not too good at gauging this and once I get outside I’m too breathless and shaky to come back in for a while. But that’s okay, because I have my camera with me and that gives me something to do while I’m catching my breath.
My son comes home from school in the later afternoon and I have to make sure I have saved energy during the day to talk to him and get him focused on chores and homework. Thank god my husband is here to help because this is exhausting! My husband and son do most of the housework. I do what I can when I can.
One of the three of us will make dinner. I love cooking but I am not up to doing it every night. Having a garden helps too. We’ll watch a movie or watch a TV show or two. We don’t get broadcast TV or cable; we exclusively use Netflix and Amazon Prime and it’s worked out wonderfully. We miss all kinds of commercials and get to see just what we want to see.
After that I will head to bed or stay up for a while either writing or goofing off on the Internet. I love writing and when it’s going well it’s great. But, believe it or not, it also takes energy from me so I have to be careful not to do it unless I’m really feeling good.
I always read before going to sleep. I read every day, sometimes for a lot of the day if I have to stay in bed, or just want to relax.
And when I’m ready, I go to sleep. Ah, sleep, perchance to dream…