Life with systemic exertion intolerance disease (SEID) means you never know just how much function, how much health, you'll have. Yet, do we just do nothing at home? Never travel? Live nothing of a life year after year?
Most, if they have a mild or moderate case, know that they must find any morsel of experience they can tolerate, as things may never get better and possibly will get worse.
So, my husband and I scheduled and saved for our once-a-year vacation, this time to Key West. Knowing my limitations, I tried to add some strategies to lessen the "exertion intolerance" effects:
- I added a couple days to the trip so I would not be trying to see it all and doing too much
- I arranged for wheelchair transport in connecting to the second flight, both coming and going, reducing the walking in the very big Atlanta airport.
- I scheduled at least 3 hours of rest (either lying down in the pool or in the bed) every day.
- My husband pushed me in a wheelchair at the museums (they have them there).
- I took ibuprofen just about the whole time.
- Stayed at a motel with four restaurants within 2 blocks, one across the street.
I was surprised at my ability. About the third day of the trip, in the evening, I had the severe mental fatigue. I couldn't do math, as in figuring a tip, was irritable, and couldn't participate in my husband's effort to converse. But, I was back to my normal, but limited, self the next day.
A little surprising to me; the turbulence on the plane caused severe nausea (without the headache that I normally get before the nausea that comes with some of the SEID crashes. Note to self: Take anti-nausea medication with me on the next plane trip.
Did I get a reprieve, I wondered. Am I better than I thought? I flew home on a Tuesday. I was alert and able to do some computer work the next day. But then it hit.
And, on Wednesday afternoon, I started to feel the crash come: debilitating fatigue, brain fog, feverish then chills, headache, nausea. I know it when it comes. So, no, the 6 days of function on the trip, surprisingly without a crash, did not mean I am better. How long would it last? Usually, a crash lasts 2-4 days. I just take ibuprofen and stay in bed as much as I can.
It's just part of my life. I sometimes have to be absent for days at a time, waiting for the suffering to pass, which it always does, sooner or later. But this time was different. It lasted 12 days. My work (part-time freelance as a communications specialist) was piling up. But there is no pushing through from these crashes. When I try, it just prolongs and worsens the crash. I must just wait it out.
Each day, I would think, maybe this is the last day of the crash. Maybe tomorrow I'll be able to sit at the desk for a few hours. When this happens, a fear comes over. Maybe I'm stuck. Maybe I will not recover this time. Maybe I will never leave the house again. Maybe what little life I had is now going to be no life.
But, day 12, it started to lift. I asked my doctor: how was I able to go 6 days without a major crash from all the vacation activity? What mechanism kicks in temporarily? And then, even while I'm able to be more active without a payback for the 6 days (whereas the crash usually comes after just 1 or 2 days of being more active), what happens in the body that makes me crash when I come home and have the crash last so much longer than usual? Is there some override vacation switch in my body? Could adrenaline actually have that much effect for that long?
He does know. But he said he sees similar vacation-related patterns in his other patients with this disease.
Lessen learned: Don't plan any commitments for 2 weeks after a vacation.