A Day In the Life of A Chronic Pain Patient
The alarm goes off, the first one, and I roll over to assess todays pain. It’s about a five in some places, and my hands and legs are the top screamers of the day at a solid 8 on a scale of 1-10. I take a muscle relaxer and a pain killer, and since its my hands, I take an anti inflammatory as well and roll back over waiting for the pills to kick in, if they kick in, some days they don’t.
The second alarm goes off and the kids get up. I slowly rise to my feet, not because I am lazy, but because insomnia robbed me of sleep, I got maybe 4 hours of fitful sleep last nite, and that’s generous. I shake off the cobwebs in my brain and limp and stumble to the coffee pot for my sweet morning nectar that will hopefully make me awake enough to carry on my morning responsibilities. The pain in my legs didn’t diminish yet, theres still a chance that sometime today I will see some relief, but its more and more doubtful as the minutes pass. After filling my cup with a large handle because my hands are stiff and not wanting to bend, I go to check on the kids progress. They are dressed and brushing their teeth, though my son comes to me with his pants unbuttoned and asks for my help. After several futile attempts because my hands just don’t want to cooperate I sadly ask my daughter to do it. Depression hits hard on days like today when I cant do the basic things a mother should be able to do to care for her children.
We hastily pile into the car, given my condition this morning I skip the frills such as jeans and a tee shirt and just slip my slippers on my feet and stay in my sweats then I run the brush thru my hair, brush my teeth, both difficult tasks as my fingers don’t want to grasp anything. I drive the kids the 35 minutes to their schools and drop them off with a kiss, then drive back 35 minutes to my home and turn my computer on to begin work. I don’t just use the computer for work, its my main form of communication with friends. See my “real” friends ditched me long ago because I couldn’t do all the things they could do and they got tired of asking me to. So now its just me and my online friends, friends who understand me as they are going through the same thing. I cant “see” them for the most part, but knowing they are there is both a relief and a comfort.
I log in to work and sit down with the rest of my pills, five more total, I couldn’t take these when I got up because they make me drowsy and I don’t like to be drowsy with the kids in the car with me. This lasts all of a few hours, and the insomnia of the night before results in me HAVING to lay down. I have no choice in the matter, my body shuts itself off, most days u will find me laying on my floor taking twenty minute catnaps.
I rise and continue to work, slipping away only to grab a small bite to eat, even though I have no appetite, just so I can take more pills. I need the pain and anti inflammatory so that I can work, typing requires the use of my fingers, as does dialing the phone, so I have to take them even though they aggravate my stomach problems. Other than that I work and chat all day, until its time to go and get the kids.
Today I wont be running errands, hurt too badly, so I leave my house at 2 in order to be there by 2:30. If I am not there by 2:30 even though they don’t get out until 3 I will not get a parking space and will be forced to walk. Now I don’t mind a little walking, but I am talking A LOT, like a few blocks. I wait there for a half an hour, that’s MY time. I knit if my hands aren’t too bad, I turn the radio up and lean the seat back if everything hurts, and some days I bring the laptop. I write posts, email friends, or just play free cell. Its my time to relax before the next flurry of activity hits. Today I decide to bring my laptop. I write some emails in word to send to my friends later when I get back home, all I have to do is cut and paste. Then the bell rings, schools out. I jump out to meet my daughter and hurry her into the car to go pick up her brother, whose school lets out at the same time. While we drive across campus, three minute drive, I ask her about her day, her homework etc. She always asks about dinner, or whatever plans we may have for the evening. She also asks how I am. She knows how badly I hurt sometimes, shes seen things a nine yr old should never have to see, her mother screaming in pain, unable to dress herself to get to the hospital. Again here comes the guilt, along with the depression. It hurts my heart and a lump forms in my throat but I fight it back and put on my happy face. People with chronic pain are used to the happy face act. The fine reply when asked how we are feeling, because they are only asking to be nice and if we told them all that hurts they would be speechless. We are used to pretending and lying while inside we are dying.
Next stop my sons school. Often he waits outside for us. I have to park and block traffic because there is limited parking. I run to take his hand and stuff him into the back seat strapping him in and speeding off. I will pay for running later. The same routine goes with him, I ask about his day, homework, if hes gotten in to trouble. The kids and I listen to music and talk about their days as I maneuver through the rush hour traffic on the thirty five minute drive home.
Once I get home, more pills. Pain reliever, muscle relaxer, something to calm my nerves because being worked up does NOT help my pain. I have half an hour where the kids watch tv and I finish up any calls, notes or emails. Then I start dinner. My son now sets the table, my daughter clears. All I need to do is actually make it. The complexity of the meal is determined by how badly I hurt that day. On a day with little pain I might make my famous fried potatoes. Not today though, my hands will not cooperate enough to cut and peel. Instead we have salad, light strain on me to cut up the veggies but I cheat and use bagged lettuce, which helps a little. I grill some frozen chicken strips for me to put on my salad and make the kids a nutritious meal with pasta and meatballs and their side salads. This takes about 30 to 45 minutes to prepare, and by the time I sit down to eat, I am exhausted and sore. After dinner I remember I have a load of laundry in the dryer, so I take it out and fold it while I check my email and my daughter cleans the kitchen. I should mention I realize how lucky I am to have my kids, not only are they my reason for being but they are also a huge help. My son comes in as I lay down for twenty minutes and reads me a book, his homework for the nite. I listen then sign papers, go over my daughters school work with her, then ask them to play quietly for twenty minutes as my meds have kicked in and I cant do anything except close my eyes. I set my cell alarm for 20 minutes, I hate missing spending time with my babies but sometimes I have no choice. My alarm goes off and I am refreshed, well not refreshed, but my eyes will stay open without tooth picks.
The night time activities commence. My kids have their showers, I have to supervise this to limit the mess they make. Less mess is less stuff for me to clean up. I put their clothes in the laundry, then prepare for my own shower. I love the shower, it loosens the tense muscles, but often I dread going through the hassle of taking off my clothes to get in. tonite I fight it, I get in and feel instant relief in the hot steady stream of water washing over me. I get out reluctantly as the water cools. The kids and I usually settle into my bed and watch some shows together as I cruise the net checking up on various friends and reading message boards, answering questions when I can, asking them when I have them. My kids drift off, and one by one my friends log off, and here I am wide awake, wondering if sleep will ever come. I go to bed at midnite, I toss and turn for an hour before getting back up. I take some more meds, trying desperately to get sleepy, well I am sleepy, but my brain just wont turn off. Thoughts of today, tomorrow and yesterday play in my head. Sometime between two and three eventually the fatigue overcomes the mind, and I dreamlessly drift off, only to wake up an hour later. This continues until the alarm goes off for school, and I race through yet another day filled with pain, depression, frustration, and regret with my smile pasted on, and the answer ‘fine” on my lips.
Next time someone you love suffering from chronic pain condition, show them you care, tell them to elaborate. We need people to listen, to validate us and let us know we aren’t crazy. Even though this is an invisible illness, it takes a big toll on us both physically and mentally and all we ask is that those who love us, is to try to get us, try to see where we are coming from.