Day In the Life of Someone with Chronic Pain
Chronic pain is a close friend of cystic fibrosis - a particularly unwanted friend, that is. Although chronic pain is a relatively common complication of CF, it is not an easy inconvenience to live with.1
Experiencing chronic pain with cystic fibrosis
Within the last year, I have accepted the fact that I live with chronic joint pain from cystic fibrosis-related arthritis. I guess prior to this year, I explained it away as just a side effect of medications or CF exacerbation. I kept quiet about my pain mostly because the subjectivity of pain made it difficult to talk about. I often wondered: Would anyone believe me? Would my pain be taken seriously? How do I manage it? Or, am I just going crazy?
I know the stigma surrounding pain is one that affects me quite frequently.2 You don’t expect a young woman like me — a mom of a busy toddler, certainly — to manage and be treated for chronic pain. That’s why sharing this information about my daily pain feels so incredibly vulnerable. It breaks down my disguises, exposes the necessary treatment, and highlights the daily calculations someone with chronic pain experiences.
Chronic pain can be very consuming--both physically and mentally. It can also be an another unexpected roadblock you learn to function around when living with CF. I hope detailing one day of chronic pain gives you a glimpse into this often reserved and unaccounted world.
What my day with chronic pain looks like
I woke up and I feel it almost immediately. The joints in my ankles and wrists are throbbing. This isn’t unusual. I turned my heated blanket up and sink into the warmth. Thankfully it’s the weekend and I let my husband get our son out of bed because I know the minute I get out of bed too, I have to face the aches. It’s only the morning and I can feel the pain stealing energy already.
Time to get up and get moving. I swear resting sometimes only makes it worse. I’m eager to take my medications and have some coffee, and then I know I’ll feel some kind of relief.
Finally, I am medicated! Things will be looking up. I took my 1400mg of ibuprofen, 10mg of prednisone (both for inflammation and pain control), and all my other CF pills. I did my morning breathing treatments and vesting. Breathing easier always helps my body feel lighter and less achy. Slowly, I can feel the fog of pain lift. I look outside and it’s raining so I know I’ll be extra achy today. I’m not sure how true that old wives' tale is, but rain and cold are not a happy sight.
I asked my husband if he could watch our son while I hopped in the shower. My medications took the edge off but I’m hoping a long hot shower will make me feel more like myself. I let the extra hot water rush over my joints, massage them, and stretch my body a little. It’s helping. I feel the fog lift a little more again. After my shower, I get ready and prepare to take advantage of the next few hours. I know this is when I feel the best throughout the day!
I take 1000mg of Tylenol as a calculated move. Tylenol does nothing for my pain by itself but if I save it for last, after all my other remedies have had a chance to work, it has enough power to help. Something I have learned this year: the timing of medication to manage pain is an art form. Some days you get it right - others, not so much.
My “golden hours” weren’t very golden today. I’m definitely achy. I’m taking the time during naptime to do treatments and then lay down. My body hurts and I am being zapped of energy. It’s a bummer because I was hoping we could do something fun today as a family, but I just don’t have the energy. After a rest, I do feel better!
The start of the evenings are always hard. This is right around the time I start feeling what I affectionately call “breakthrough pain”. It’s when my medications start wearing off before it’s time to take my evening doses. I contemplate taking some Tylenol but I’m too stubborn and push through. I’m thankful I planned ahead and made a slow cooker meal for tonight’s dinner.
Finally, I’m in bed watching a TV show and cuddling with my son. My joints are throbbing and there’s a general feeling of heaviness and ache all over. I feel tired. More so, I am frustrated that today was a day I felt consumed by pain. I felt defeated today and like I couldn't stay on top of it. I lost control of it today. Not every day is this bad. Tomorrow will be better.
Time to medicate again! I’m hoping to find some relief, do my treatments, and go to sleep. I wonder if I should take the stronger medication I have been prescribed for days like this. I know that if I don’t, I’ll probably struggle to sleep. However, I always feel a sense of guilt. I’m 29 and need pain medication? It doesn’t seem right.
It’s hard to find a balance between optimizing my quality of life and managing my own expectations. I settle on taking the Tramadol knowing my body is trying to send a strong message: it needs pain-free rest. Tomorrow will be better.
And, tomorrow was better.
Do you live with chronic pain? What do you wish others understood about chronic pain? Share with us in the comments below!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?