This last week was very hard on me. It very well may have been the hardest week I’ve had since my first diagnosis all those years ago. It’s not that it was just a tough health week, although I do admit I did experience quite a large amount of pain. But, this week was mentally challenging. I use that word ‘challenge’ on purpose. Life is a challenge already, so for those of us with debilitating illness life can be more hard than you can possibly imagine. Things that healthy people take for granted, like getting dressed, walking down a street, opening a door…these things can be a challenge for those of us who are sick.
This morning I woke to my alarm after only five hours of sleep. I would have loved to sleep more, and that certainly was the idea when I tucked myself into bed at 10:30 last night. However as we move into summer, the heat of the day rises and rises, and with our beloved tropical weather comes the less loved humidity. And in this humidity did I toss and turn last night, getting up periodically to turn my fan on higher and higher, praying to the sandman to fall asleep. Unfortunately, my prayers were only answered around 2am, or perhaps it was then that the temperature outside finally decided to cool down. The point being that I only got 5 hours of sleep, instead of the preferred 9.
Upon opening my eyes I instantly knew it was going to be a bad day. My fingers and wrist confirmed this as I reached for my phone to switch off my alarm, noticing how swollen my fingers are, and how tight my wrist was when I attempted to bend it. Breathing in deeply, I hoisted myself out of bed, crying out involuntarily as every joint in my body protested the movement.
I would have loved more than anything to switch off my alarm, lie back down, and fall back asleep. Instead I swallowed my morning pain medications, and got out of bed. Hobbling into my kitchen, I greeted my hungry cats who were waiting next to their empty food bowl with expectant looks on the their furry faces. A scoop of dry food in the bowl silenced their meows and I walked through my apartment opening my curtains and windows for the day. Back in my bedroom I stared at my dresser trying to decide on the easiest garment to put on. Something without too many buttons and zips, something that wouldn’t hurt my hands as I pulled them on and off at various doctors offices. I chose my comfiest pair of denim shorts and a cotton tank top, pulled on my slip-on memory foam sneakers, brushed my teeth with swollen hands, and was out the door.
I made good time to my bus stop, with five minutes to spare, despite it taking me ten minutes to painfully traverse one and a half blocks. One bus came before mine and I noticed a girl one block down running to catch it. I hobbled over to the bus and told the driver she was running and could he hold on so she could catch up. He nodded and kept the door open and I smiled at her as she approached, hopefully conveying that I was glad she made it. She showed me her thanks by body checking me and practically growling “Get out of my way!”.
Wow. Just wow. No manners. Even the bus driver was stunned as he asked if I was okay, having stumbled slightly from the impact. I nodded, shocked, and stepped back marveling at the rudeness of a stranger whom I’d just helped.
My own bus arrived moments later and I got on, still shaken from disbelief. I rode in silence to the address my OBGYN office gave me for my first appointment of the day. Today was a mammogram and ultrasound to check on the Lymphoma I was diagnosed with last year. By the time I reached the building, I was exhausted, and unsure if I could get through the day. My joints throbbed, I was hot and sweaty, I could feel a headache encroaching, and I felt slightly dizzy as I made my way to the 5th floor. The Obgyn office had told me all I needed to do was go to the 5th floor and I’d know where to go, but once there the hallway that the elevator opened onto was dark and nothing look familiar. I walked up and down the hall looking at each placard next to doors but none looked like an imaging office, and hadn’t the receptionist at my Obgyn told me it took up an entire floor?
Frustrated, hot, and in pain, I called my Obgyn office and the receptionist yet again told me I was in the right place. Well, no sorry, you’re wrong. So I asked for the phone number of the office where my appointment was made. And upon calling it and finally talking to the correct person, I was informed that not only was I in the wrong building, but that the correct building was seven blocks away. I had in fact passed it on the bus on the way to the wrong building. Are you kidding me?! Unsure of why I was given the wrong address, I grudgingly made my way downstairs and back out on to the street. I had to make a decision then. My appointment was in 15 mins, and while Google Maps said it was a 10 min walk, that didn’t necessarily mean a 10 min walk for me. However, this was a very important appointment, so missing it wasn’t an option I could afford. And so I started to walk, slowly, to the correct address 7 blocks away.
Twenty mins later, I arrived huffing and puffing-it was so hot out even at 8:30am-at he correct building and went into my appointment. My second ever mammogram. What a joy that was, for not only having my poor breasts squeezed and poked and prodded painfully, but the terrifying knowledge that I was there because they suspected my lymphomas was back. What a fantastic way to start a new week.
By 11:30am, my appointments were done for the day and my body felt like it had been run over by a truck repeatedly. For any regular person, while the events of the morning would have been frustrating, they would have been pushed to the back of the mind and the rest of the day could still be had. There could still be redemption, the day could still be enjoyed. But not for someone like me, with a severe illness. Days like today are catastrophic in the week ahead. I knew my body would feel the pain of today, for hours to come, and certainly for days as well. The stress of the ordeal would cause a pain flare to ricochet throughout my body, pinging joints from head to toe. Swelling in my feet would start as soon as I put them up, maybe sooner.
So, on days like this, when you know everything is about to go to hell in a handbag, you have an important choice to make. For a regular person, your day co tongues as normal. You’d probably go into work late, or if you’re not working you might stay out in town and get your groceries done, run errands, see friends for lunch etc. Your bad morning could be reclaimed by a well time cup of coffee with a girlfriend, or a sale at your favorite store. But for me, and others like me, you have to make a smart choice. You know the following days are going to be brutal, your body is already showing early signs. So you can go straight home, take a hot shower/bath, and crawl into bed to start the recovery process, or you stay out. If you stay out, you know it’s likely to be worse for you later, however since you’re already out maybe you might as well get as many things done as possible. That way if your week really is over before it began, it’s not a complete waste. You got your errands done, shopped for groceries, and picked up your prescriptions. Then once your Monday is over and you can truly crawl into bed, you’re set for the week. Bed rest can happen without the stress of needing things, or being out of medication, or food.
This is what day to day life is like for someone with a chronic illness, especially one that’s pain related. Every part of every day is planned out in the event of an emergency where you don’t have the time or energy to take care of yourself farther down the line. This is where Spoon Theory really matters. We wake up knowing exactly how much we will be able to handle that day. Sure, it may change as the day goes on. You may collect a few more spoons, or if you run out you borrow from the rest of the week since you know full and well that you won’t be going anywhere.
Today was a hard day. And it was only Monday. A Monday that followed a terrible week, and an exhausting weekend. But my world isn’t like others’. Just because it’s Monday doesn’t mean I get a do-over from last week. Last week was brutal. I survived, but it was brutal. Today was brutal. I survived, but it was brutal. And this is just how my life is now. A series of days, leading into weeks, and into months and years. All filled with pain, exhaustion, stress, and tears.
Today was just Monday for everyone else. For me, it was a whole lot more..
**If you’d like to learn more about my disease and journey please visit my page here, all support is greatly appreciated. Thank you.