I’ve read a few “A Day In The Life Of…” posts lately that really stuck with me.
While each of us walks our own path, there are certain things we all must face. In the spoonie community, the number of similarities increases. But even though we all face similar obstacles, how we overcome them is often different.
While discussing this with my fiance, I was inspired to share with you a day in my life. Not because I think my days are really that interesting, but because I don’t think even those closest to me realize what an average day can look like.
So here it is, an average day in my life.
3:00 am- I’m awakened by my bladder. Since I battle Interstitial Cystitis, I deal with frequent urination and bladder pain if I try to “hold it.” My body is stiff and I am groggy as I shuffle as quickly as possible to the bathroom. It’s a battle between needing to hurry because of bladder urgency and moving slowly because of excruciating pain. I curse my body for waking me for a measly five drops, wash up, and head back to bed.
3:05 am- I struggle to find a comfortable position that will allow me to fall back to sleep. My hands and feet are stiff and swollen, while my hips are hyper-sensitive, even the slightest pressure is causing white hot pain to shoot down my legs. Laying on my stomach seems to be the logical choice, but I know it will cause me to be awakened with horrid heartburn in a matter of minutes.
4:00 am- I’m finally able to doze off again.
7:30 am- My bladder awakens me again.
7:35 am- I crawl back under the covers. Though I know I won’t be able to fall back asleep, the warmth of my bed is where I prefer to be while I wait for the stiffness to leave my joints. Trying to force any activity more than a trip to the bathroom this early in the day will leave me gasping in pain and exhausted in a matter of minutes.
8:45 am- My fiance helps me into the shower. Due to nerve damage in my feet, showering alone is a dangerous thing. I’ve had a few instances where I’ve slipped, so I must shower before he leaves for work just to be safe. The hot water feels heavenly on my sore body, but the effort of standing and washing myself wears me out. Most days I must skip conditioning my hair because I’ve run out of energy. Shaving is a luxury.
9:00 am- I debate which pair of sweat pants I want to wear. If my bladder is causing lower tummy pain, I need to choose the loosest pair so there’s minimal pressure on my abdomen. Equal deliberation goes into picking out socks. I have many fun colors and designs, but which ones I wear depends more on how swollen my feet are. Too much swelling, I must choose the fluffy slipper socks that are nice and loose. My fiance has to help me fasten my bra, the tiny hooks have long since become too intricate for my swollen and stiff fingers to manage.
9:45 am- Now that I’m dressed, I need to set out my morning pills. A DMARD, an anti-inflammatory, a pain pill, a multivitamin, a calcium supplement, a probiotic capsule, and four tablets of Vitamin D. Ten pills to choke down with breakfast, eleven if the pain is really bad and I need a double dose. (This week I also have three steroid tablets and a hormone pill. Fourteen pills.)
9:50 am- I shuffle around my little kitchen, trying to fix myself something for breakfast. The simple option is cereal, but that doesn’t usually provide enough tummy cushion for all the medicine, so if I go that route, I’ll be nauseous all day. If I can muster the energy, I try to scramble up a couple eggs, the protein helps curb the queasy feeling.
10:15 am- I’ve eaten breakfast and am now in my trusty recliner with a blanket over my legs. No matter the temperature outside, my legs and feet are always cold in the mornings. Depending on my mood, I find something on TV or I put on some music for background noise. I’ve hit my stride, this will be the most productive part of my day. I use our laptop to catch up on emails, work on stuff for the Spoons 4 Spoonies site, and write/blog; all while on hold with the doctor’s office or medical transportation to set my appointments for the upcoming week. (I use medical transportation because it’s unsafe for me to drive. Between the nerve damage in my feet and being on pain medication, it’s just not a good idea.)
11:00 am- Another bathroom break. I stop off in the kitchen for a drink on the way back to my chair, even though this means I’ll have to pee again soon. It’s important to stay hydrated, many of my medications can cause nasty side effects if I’m not staying on top of my liquid intake. It’s also helpful to group activities like this, it saves on pain and using too many spoons.
12:00 pm- My eyes are starting to blur from looking at the computer screen, and my wrists are screaming at me. I set the laptop aside and after yet another trip to the bathroom, I curl up on the couch for a cat nap.
1:30 pm- I awake with gritty eyes and shuffle hurriedly to the bathroom. It’s always hardest to move right after waking and I barely make it in time. I feel the tears of frustration sting my eyes as my body yells in pain. This morning’s pain pill is wearing off and I can’t take more for another 30 minutes. That might not seem like a long time, but with joints that feel like grinding broken glass, it is an eternity.
1:35 pm- I have to start thinking about what I’ll make myself for lunch. I need to have it ready as close to 2:00 pm as possible so I can take my next pain pill. After weighing my options, I’ll probably settle for chicken nuggets with crackers and cheese slices, it’s easy and my go-to. If I have some in the fridge, I’ll add baby carrots, celery stalks, or cucumber slices.
2:00 pm- Settle back onto the couch with my lunch and my afternoon pain pill. About this time every day, I start to feel really foggy. It’s hard for me to focus and if I try to force myself to push through it, I will get a crippling headache. Though I have RA, this phenomenon is often referred to as “Fibro fog” and is fairly common in those with various chronic pain conditions.
2:30 pm- The pain pill is starting to kick in and I’m groggy. It’s getting hard to hold my head up, so I lay back down on the couch while trying not to feel guilty about the dishes that are piled in the sink or the baskets full of laundry that needs to be washed.
2:30 – 4:00 pm- I doze off and on while watching TV.
4:00 pm- After another trip to the bathroom, I shuffle out to our mailbox. By now, most of the joint stiffness has receded to a manageable point. I pop in my Pilates or yoga DVD and do some stretches. There’s a lot of poses I have to skip, anything that is weight bearing on my wrists is out of the question. My doctors have me on a limited exercise routine because I have a high risk for fracture. It’s a catch 22 of needing to exercise but not doing too much to hurt myself. Really, all of life as a spoonie is a balancing act.
4:45 pm- I’ve finished my stretches and am trying to find the strength to pick myself up off the floor. I am exhausted and while the stretching felt good, there are shooting pains in my legs and my feet have pins and needles.
5:00 pm- I’m finally standing again. Another trip to the bathroom. Now it’s time to start thinking about dinner. My fiance will be home soon and I like to have it ready for him, if I can. If I haven’t set something in the crockpot earlier in the day, it must be something easy. I forgot the crockpot today, so it looks like it’s going to be leftovers. I just don’t have the energy to stand and fix anything else. I collapse back onto the couch.
6:30 pm- My fiance is home. We fix our plates and tell each other about our days. I’m usually a chatterbox and scattered, jumping from topic to topic. Unless a friend has stopped by, this is the most of my social interaction for the day and I tend to go overboard. I can see in his eyes that he’s getting overwhelmed and I try to stem the avalanche of words pouring out of my mouth. Oh, almost forgot, it’s time for my evening pain pill.
7:00 – 10:00 pm- We watch TV together, or a movie. If my hands aren’t too swollen, I’ll work on a craft project. Sometimes we’ll play cards or a board game. It’s usually low-key since he’s tired from a day at work, and my body is starting its daily decline. At 9:30 pm we set out my monthly shot. They must be refrigerated, so we have to let it come to room temperature before my injection.
10:00 pm- We start to migrate to our bedroom. I grab something small for dessert or a snack so I can take my bedtime medications. Two potassium tablets, the DMARD, the anti-inflammatory, and a pain pill. Most nights it’s a double dose of pain medicine as my day catches up with me and this is when my pain is at its highest. So that’s another five – six pills. While I swab my thigh with rubbing alcohol, my fiance preps my injection. One, two, three deep breaths, a pinch, twenty seconds, another pinch, and I’m all done. We clean the area to avoid any infection and cover it with a bandaid.
10:15 pm- 12:00 am- I will lay in bed and toss about, trying to find the position that hurts the least. All of this movement after my injection means I’ll have a knot in my thigh come morning, but I can’t help it. My body is restless. I’ll play games on my phone or putter on social media while I wait for my medicine to kick in and make me sleepy. I’m exhausted and beyond tired, but my eyes just don’t want to close right away.
12:00 am- My eyes are finally drowsy. After a final trip to the bathroom, I make sure my phone is plugged into its charger and I call it a night. I’ll hopefully get a solid three hours of sleep before my bladder will wake me up to start all over again.
Obviously there are variations to this routine. Sometimes I have a doctor’s appointment in the afternoon. Sometimes we need to go to the store in the evening instead of relaxing at home. Sometimes we have plans. My injection is only once a month. But the idea here was to show a typical day, the little ins and outs of my life with RA and IC.