24 Hours of Chronic Pain in 24 Social Media Posts
There are 24 hours in a day. Every hour there is one update describing everything that has happened or changed within one particular hour of chronic pain. Will you read these and feel like you’re experiencing a bit of what it’s like to live with a chronic illness? 8,760 updates per year, just imagine. Detailed, on the hour, to the point where you can’t login to your social media and not see at least one of these posts.
• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?
Your most recent history:
1. Daisy B: “Woke up around 6:00 a.m. with stabbing pain in my ribs and knees. Fatigued all over with headache. Feet are discolored, swollen and purple.”
2. Daisy B: “I tried to stay awake but I couldn’t. Went back to sleep for five hours. Still haven’t eaten much. Headache is persistent.”
3. Daisy B: “2:00 p.m. headache has taken over, body feels numb and frozen. My stomach hurts every time I eat something. Pill count for today: four ibuprofens so I can keep down toast and snack.”
4. Daisy B: “6:00 p.m.: the red patches on my legs worsen at night when I’m cleaning my room or putting clothes away. My legs look like they’re covered in a severe sun burn.”
5. Daisy B: “I would like to focus on a book or even watch a TV show, but I can’t. Why is it that something so simple can take away so much energy?”
6. Daisy B: “Wanted to take Rory for a walk this morning. Felt guilty because I was dizzy and couldn’t walk that far.”
7. Daisy B: “Writing my to-do list for Monday. Have to call and check on my referral for GI surgeon and ask for another referral for a knee doctor who has treated my issue before in other patients. Let’s keep our fingers crossed that this doctor hasn’t retired yet!”
8. Daisy B: “PT is Wednesday. I’m not sure if I can wait that long. Pain care is supposed to call me to get an appointment booked. I’m in a literal daze all day long and even breathing hurts my ribs and back.”
9. Daisy B: “I hate that empty feeling that never leaves my stomach. Experiencing nausea and diarrhea.”
10. Daisy B: “When I sleep I position and twist my back and ribs into the shape of a zigzag, just to get comfortable.”
11. Daisy B: “Stabbing pain in neck. Can’t hold my head up or sit for too long. Body aches all over. Feet are especially numb, like pins and needles.”
12. Daisy B: “I just want summer to be over so I don’t have to be left out of all the summer festivities – constant beach trips, hiking, going out to eat, long walks, even the energy to stay present and hold a conversation. For some reason all the things I feel incapable of or don’t feel well enough to do seem to be going on generally less in the winter anyways.”
13. Daisy B: “Something I would never admit out loud because I don’t want to disappoint myself or my family: I really miss my job and working, but I can’t imagine going to work every day feeling like this.”
14. Daisy B: “My whole entire physical being is stuck on a carousel that never stops spinning. From my head to my toes, everything normal about my life has stopped and paralyzed itself in time. So when I’m feeling healthy again, someday, I can go back and start where I left off: 8 years old, at precisely where and when my youth was stolen from me.”
15. Daisy B: “Sometimes I wonder if I’ll be sick forever. Then I remember that I am still sick, so my present time becomes forever? Physical pain is my temporary eternity on earth?”
16. Daisy B: “I park my butt in the back church pew, I can’t sit straight, can’t get comfortable. My head drops and my neck feels wobbly and detached. My parents sit perfectly straight, almost perfectly healthy except for my mom, completely at ease. Why can’t I be like that? Will someone notice if I rest my head on my knees? Will they think I’m bored? Or that I’m not listening?”
17. Daisy B: “Going out in public would be easier if I never got out of the car.”
18. Daisy B: “Right side of my rib dislocated in my sleep. I didn’t feel anything I just noticed that it looked different and weird.”
19. Daisy B: “Hollow breathing and dizziness this morning. Wonder what the rest of the day will bring?”
20. Daisy B: “Something positive happened today. I fell asleep and dreamed that I became a lawyer who spoke Russian and lived an adventurous life and was absolutely nothing like present me.”
21. Daisy B: “Maybe Disney princesses weren’t cursed into sleep until true love’s kiss – maybe they just struggled with an undiagnosed chronic illness. How do you break that curse?”
22. Daisy B: “9:00 p.m. and the battle’s just begun. Insomnia, nausea and fatigue. Hoping to get some rest before 2:00 a.m.”
23. Daisy B: “I can’t remember the last time I woke up and wasn’t dizzy or lightheaded. No real rest with restless pain.”
24. Daisy B: “I wonder if my niece will grow up to think all 21-year-olds live their lives in pain like me. Will she dread adulthood because of me?”
I would say on a monthly basis I only share a minimal amount of information on how this disease is taking over my life. But it’s scattered bits and pieces I share through my support group and my friends – it’s not every detail of what EDS is putting me through. I shared the full post above on my own social media (Facebook friends) to see what their reactions would be. Half of the commenters wrote words of encouragement along with thoughts and prayers, hoping I would get relief soon. The other half did the same but with more confusion as to how a patient like myself can be sick for so long with these symptoms and without treatment as of June 1, 2017 (which is hopefully the date of my next pain care appointment). This confusion reminded me of my very first pain care appointment, when the doctor (who I’m no longer seeing) said, “This is a problem; you know more about these diseases than I do.” But how is that a problem that can’t be fixed with more in-depth education? Why are the patients and their keen knowledge and comprehension of their own personal symptoms a problem?
Thinkstock photo via vladans.