6:15 PM
Shit, I mumble as my leg gives out from the shooting pain striking through my body like a lightening bolt.
I rarely curse unless it’s when I write about something that upsets me or when I’m in terrible pain. “Rarely” changed to “several times a week” when my chronic widespread pain came about.
6:20
I make my way over to the couch, carrying my premade dinner in one hand and a salt shaker in the other. My pain dictates where I sit every night. Sometimes my neck is killing me and I need to perch at the dinner table where I probably belong. Other days my shoulders hurt or I am dizzy from a skewy autonomic nervous system disorder and need to recline further on a couch. Not long ago I had a lucky streak and thought things were taking a turn for the better. Those days I got to choose where I wanted to sit and whether or not I wanted to get out of the house.
I make my way over to the couch, carrying my premade dinner in one hand and a salt shaker in the other. My pain dictates where I sit every night. Sometimes my neck is killing me and I need to perch at the dinner table where I probably belong. Other days my shoulders hurt or I am dizzy from a skewy autonomic nervous system disorder and need to recline further on a couch. Not long ago I had a lucky streak and thought things were taking a turn for the better. Those days I got to choose where I wanted to sit and whether or not I wanted to get out of the house.
6:24
It’s hard to eat when you’re nauseous, but severe pain rarely comes without a guest. The headaches are the one I dread the most, but neither symptom is a fun one to deal with. I think about my physical therapy and how it’s three days away. I don’t feel like I can make it that long without having needles stuck in my arms and wiggled around in the giant, painful triggerpoint knots until it hurts so much I want to scream, but the aftermath of dry needling is worth the pain I go through of getting it done. My arms stay painfully sore for 24 hours after, but my chronic pain levels do drop significantly for several days when I do get needled.
6:27
I should document the pain I am having in my “symptom journal,” but quickly stifle the thought. It’s ironic after all; it hurts my arms to write down the problems I have all day, and frankly I am in pain almost all day, every day, so what’s the use?
I should document the pain I am having in my “symptom journal,” but quickly stifle the thought. It’s ironic after all; it hurts my arms to write down the problems I have all day, and frankly I am in pain almost all day, every day, so what’s the use?
6:45
I can’t take it anymore, and decide I need some sort of relief. It’s either doing my postural series, or taking a hot bath. Going to sleep early isn’t an option, as it just means lying in bed several hours before my body lets me drift to sleep. I’ll opt for the bath. Again.
I can’t take it anymore, and decide I need some sort of relief. It’s either doing my postural series, or taking a hot bath. Going to sleep early isn’t an option, as it just means lying in bed several hours before my body lets me drift to sleep. I’ll opt for the bath. Again.
7:00
I used to love taking baths to unwind after a long day at school or work. My eyes graze over my past sanctuary, and I think back to how nice it was when the calm, warm water felt relaxing over my skin. Tears well up in my eyes as I write this, as I don’t remember the last time I have felt “relaxed.” The last time I sat on a fluffy bed I thought about how nice it was that I could actually fall asleep somewhere other than the bed at home I have taken years to improve as my symptoms got worse. I don’t remember the last time I genuinely felt comfortable somewhere.
I used to love taking baths to unwind after a long day at school or work. My eyes graze over my past sanctuary, and I think back to how nice it was when the calm, warm water felt relaxing over my skin. Tears well up in my eyes as I write this, as I don’t remember the last time I have felt “relaxed.” The last time I sat on a fluffy bed I thought about how nice it was that I could actually fall asleep somewhere other than the bed at home I have taken years to improve as my symptoms got worse. I don’t remember the last time I genuinely felt comfortable somewhere.
7:03
I slip into the hot water and quickly decide I need more cold if I don’t want to pass out. POTS can be very finicky, and I don’t want to have a new problem — possibly drowning — on my hands. I have enough medical issues to deal with right now, thank you very much!
I slip into the hot water and quickly decide I need more cold if I don’t want to pass out. POTS can be very finicky, and I don’t want to have a new problem — possibly drowning — on my hands. I have enough medical issues to deal with right now, thank you very much!
The water cools down quickly and I lean back onto the towel-pillow I made at the edge of the bath. Gossip Girl is playing softly in the background, but I quickly find that I can’t get comfortable enough to watch the screen in the tub. I turn off the iPad and on The Kane Show Podcast I had been listening to for the past several years.
I close my eyes and lean back. Pain shoots from the base of my neck to my head, and I twist and turn until I find a spot that doesn’t hurt as much. At least this will be good for my arms, I think to myself as I float them back and forth in the warm water.
7:16
Everyone tells me water is therapeutic, and I finally start to agree. My muscles are slowly calming down and I feel like I can actually think.
Everyone tells me water is therapeutic, and I finally start to agree. My muscles are slowly calming down and I feel like I can actually think.
7:50
My 47 minutes in heaven are over. I have to get out of the bath now, unless I want to look and feel like a prune the rest of the evening. Plus the position is terrible for my aching neck, and I don’t want to trade one pain for another. I have learned a lot about ergonomics in the past two years, and wish I had known about them before my first several bouts of chronic pain.
My 47 minutes in heaven are over. I have to get out of the bath now, unless I want to look and feel like a prune the rest of the evening. Plus the position is terrible for my aching neck, and I don’t want to trade one pain for another. I have learned a lot about ergonomics in the past two years, and wish I had known about them before my first several bouts of chronic pain.
Now I am very careful to prevent any kind of pain I possibly can. I feel pretty high maintenance when I go out with friends, but they at least understand and can forgive me for it; pain, on the other hand, can not.
8:03
I’m in my PJs and ready for bed, but can’t go to sleep yet. It gets tiring flipping back and forth, as I never have a comfortable position, and I don’t have enough energy to do this for more than two hours. My body doesn’t usually let me fall asleep until after midnight, so I go downstairs to wait.
I’m in my PJs and ready for bed, but can’t go to sleep yet. It gets tiring flipping back and forth, as I never have a comfortable position, and I don’t have enough energy to do this for more than two hours. My body doesn’t usually let me fall asleep until after midnight, so I go downstairs to wait.
8:05
I open the Facebook app on my phone to take a look at the world I was once a part of. I’ve always realized life on this website isn’t really realistic, but I believe my guess that the majority of my twentysomething friends don’t face chronic medical issues every day. Some of them do, though, and many of those people look like they are normal. I know that better than most.
I open the Facebook app on my phone to take a look at the world I was once a part of. I’ve always realized life on this website isn’t really realistic, but I believe my guess that the majority of my twentysomething friends don’t face chronic medical issues every day. Some of them do, though, and many of those people look like they are normal. I know that better than most.
8:06
My arms hurt. I snap my elbow and realize I need to go back to my world. I close the app and turn to the television.
My arms hurt. I snap my elbow and realize I need to go back to my world. I close the app and turn to the television.
8:08
I realize nothing has helped as much as I had hoped. I heat up my herbal neck pillow and rest it on my neck.
Different nights call for different activities, but on really bad evenings I can’t really think and will tune in to an audiobook, catch up on whatever reality TV show I’m into, or visit with friends. Almost everything hurts — I can’t read or write, as both of those involve some sort of use of my arms — but I always try to stay optimistic and realize that one day I will have a day where I feel good again… Just not today.
I searched the document and the word “pain” was listed 21 times in the 2 hour time period I documented. Instead of editing it to make it more readable, I left the number because I felt it touches the surface on how hard it is to deal with so much pain, day in, and day out.
22.
Krista Lauren 
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