Mornings Always Suck With AS
Every morning Keegan, my husband with AS, wakes up muttering the same phrase. “Ugh, I don’t want to get up right now.” No matter if he’s getting up at 6 am or 10 am, the experience of waking up is rarely pleasant. Early in our relationship, I chalked it up to Keegan not being a morning person. But as his AS symptoms began taking over more of his day to day, clearly his mornings were some of the worst of his day.
Why is this? After some quick Googling I found out that many patients with auto-inflammatory disorders suffer from what is coined the “gel phenomenon.” Because our bodies are inactive during sleep, those with arthritis and similar diseases suffer from joint pain and immobility due to the lack of movement. Inactivity causes inflammation, leading to pain and stiffness in the morning.
All this made sense from observing Keegan each morning. When he wakes up, he finds himself stiffer until up to 2 hours after waking up. He mentions how his body moves slower. Even nausea, eye inflammation, and brain fog are worse during the morning. This often means as a family that I’ll get out of bed to let him take things a little easier, especially on weekends.
What’s the worst about mornings?
Keegan always talks about his nausea. He’s told me that pain and immobility are more easily treated than nausea. (It makes more sense having now gone through pregnancy and morning sickness.) Luckily we live in Pennsylvania where medical marijuana is legal. Keegan often takes a little once he wakes up to help with nausea.
Overall, what’s tough is that he rarely feels like he’s had a good night of sleep. We’ve done a lot to make our bed comfortable—firm mattress, foam mattress topper, special pillows. You name it, we’ve tried it. Nonetheless, Keegan often wakes up not feeling well-rested because his body’s inflammation has spiked during the night. In addition, he never knows when the morning symptoms will go away. Some days he's lucky and they only last for 45 minutes. Other days they stick around for over 2 hours.
How does Keegan make the best of his mornings?
Keegan says the best thing he’s done for mornings is to have a routine and stick to it. He’s a stay at home dad, so routines are crucial to getting himself and our daughter ready for the day. It’s a basic list but helps him know if he needs to ask for help. If his pain and stiffness haven’t gone away with enough time, he may be flaring up. Each morning is a way to get the baseline of the day.
He also makes sure to wake up with just enough time to give himself a moment to relax mentally and physically for the day. I wake up before him and make coffee for both of us. Once Keegan is up, he grabs a cup and relaxes on the couch for 30 minutes before Kaya wakes up. This is a sacred time for him. Yes, he wakes up earlier to get this time, but it also means he’s better prepared to take care of a toddler.
Tips for getting through the morning
- Find a routine that gets you through the worst in your morning.
- Eat and drink what energizes you (in a healthy way).
- If you're in pain, eat something small and immediately take pain medication you're allowed (ex: Motrin or Tylenol).
- Try nausea home remedies like ginger or peppermint drops. (You can find them in the pregnancy goodies at your local supermarket.)
- Tell caregivers or loved ones if your symptoms don't improve 1-2 hours after your morning starts. This may indicate a peak in AS symptoms.
The good thing is that mornings rarely predict how Keegan will feel in the day. Once we figured out he had AS, I stopped asking Keegan how he felt. when we first woke up. Typically it’s a better question to ask closer to 11 am, a good 3 hours after he’s been up and about. It’s common for me to send him a quick text from work asking how he’s doing and if anything is troubling him that day. How are your mornings and do you have anything that helps you?
Do you use the word disability to describe your AS?