In a world of push-push-push, sometimes I need to slow down
With an EDS pain flare and travel-induced ailments, my body cried out for relief
The past few weeks have been a whirlwind. A couple of weeks ago, for instance, I went out of town for a funeral and then flew directly from there to a conference, where I spent a few days before returning home. The result from that travel? Exhaustion, a cold, and a pain flare from Ehlers-Danlos syndrome (EDS). I just want a nap!
When I was away, I wound up sleeping on three mattresses in four nights, and while they weren’t bad, they weren’t mine. My bed at home is the perfect firmness for me. A soft mattress gives me back pain, but a firm one with just a little bit of give provides me with the best support and pain relief. Those other mattresses were an adjustment, and when you add the emotional stress of travel — which for me can trigger physical pain — I was in the perfect storm for a flare.
Except when my body is pretending it’s opposite day, my right side usually flares up first. My right shoulder is usually my litmus test; if that’s sore, I know my body is thinking it’s game on for a full-fledged flare. That’s exactly what happened over the past few weeks.
When my right shoulder hurts, my body goes into protection mode without me even realizing it. When that happens, my right arm doesn’t swing or move when I walk; it just hangs limply at my side. It might swing a little bit from the elbow, but not from the shoulder at all. Though it may look bad, it mostly feels kind of numb. I know that it actually hurts, but for the most part, I don’t consciously recognize the pain. That’s one of the ways I cope.
At home, recovery is a priority
After being home for about 48 hours, I started to feel not so great. I’m always tired because of my EDS, but the cold I picked up has apparently added another layer of discomfort. I don’t feel that bad, other than a sore throat and extra fatigue, but that’s plenty given my pain flare.
I’m bad at slowing down, but I’m trying to do it to help my body recover. I’m reminding myself that I don’t have to go full speed all the time, that it’s OK to take a break. The other day, I spent an afternoon just relaxing on the couch, which I almost never do. In fact, my way of managing EDS is mostly through movement. But like anyone else, sometimes I need to press the pause button.
While the past few weeks haven’t been the most fun, they’ve served as an important reminder that sometimes it’s not just OK, but necessary to show myself grace. The world will keep turning, and everything I need to handle will still be there, waiting for me tomorrow.
Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.
About the Author
Patty
HI Karen-
Amazing you were even able to take on that travel challenge! Same thing happens to me- although I am age 69 now, I am pretty much unable to travel due to the crazy challenges! Mattresses in hotels AND HOSPITALS are soft which is comfy for most but not us! I give up after driving the hotels crazy with mattress/room changes which really do not good. Sleeping on the floor is what I have to do- years ago requesting a recliner for sleep helped but now with all of my injuries, not helpful for sleep but definitely more comfortable to elevate my legs and help me recline while sitting in my hotel room.
Doesn't it just take time and lots of rest to recover? I know of no magic formula although I find high protein drinks seem to help a little. I picked up Covid traveling most recently- sitting in a wheelchair for hours upon hours in the 'handicap' section of a very busy crazy airport while my flight was delayed, delayed and delayed and finally cancelled. Luckily ( and thank you God) my seat was exchanged with a first class passenger as with my flight reschedule, I was placed in the very back of the plane where I feel every vibration resulting in immediate horrendous muscle spasms with tears flowing. The stewardess gave me tonic water (quinine) telling me she finds it stops muscle spasms and unbelievably, it did stop them! I now keep (she recommended Fever Tree brand saying it has the highest quality of quinine and works the best) tonic water at home and yes, it certainly works better for me than a muscle relaxer! Thank you Delta Airlines!
Karen- don't feel guilty or that you should have done something different with your travel- you were blessed to be able to accomplish what you needed to. My pain medicine MD told me to "not fight the pain or fatigue, just accept it and take time to recover". Take Care and thank you for your helpful column!
Helene
Hello Karen,
I always appreciate reading your articles: I always feel so represented by everything you say. This one hit the nail on the head for me: traveling is something that (even in better circumstances) is more stressful than most people realize for us. Even sitting in a car for a few hours, not even driving, can make my knees hurt so much. I make sure to do as many positional changes as I can but it's still difficult.
I hope you are feeling a bit better today.
- Helene