I am starting to get used to what is my current "normal." Here's how the days are going:
I start off the day with my first dose of hydrocortisone and fludrocortisone. I sit in bed and read for awhile to let the HC kick in, then I get up and have a cup of coffee or tea. I've had to lighten up on the beans in the coffee because it stresses my adrenals, but I seem to be OK with a smaller amount of lighter coffee. I'm hoping to be able to continue to manage one little cup every day just because I really like coffee! I'll be looking for a really good decaf when our current stash runs out.
I enjoy more reading while I drink my coffee. Then, if my husband and I are feeling up to it we take a short drive to the area where he walks and I sit and read some more. Someday I hope to be able to walk a bit again myself. If we aren't feeling up to it, back to bed I go, but these days I can usually sit up instead of lay down.
I always feel close to the edge of exhaustion, even on the best of days.
My work day normally starts in the early to mid-afternoon, and lasts for 3-4 hours generally. I work at home, which is an immense blessing right now because I can still manage to work even though it is very very tiring. If I could afford to retire right now it would be tempting even though I love what I do. I most definitely could not commute to work and put in a full day.
I have to allow plenty of time to get ready because after a shower I need to sit and rest before I get dressed. Every little job that people normally think nothing of actually takes a surprising amount of energy for me. I have to plan for the extra time, and figuring out how much time to plan is somehow a hard thing for my brain to do right now.
If it's not a work day I can manage to do a load of laundry plus a few other low-energy chores like sweeping the kitchen floor. I might add that none of these are done with speed! I have to rest often. Do a bit, rest. Do a bit more, rest.
Evenings are better. Our bodies need less cortisol in the evening, so I think that's why I am less tired then. Sometimes I can help a bit with dinner if I rest a bit right after work. Thankfully my husband has learned to cook some and he routinely cleans up after dinner. He's been a trooper through this so far. He even mopped the kitchen floor, a chore he once said he "doesn't do."
If it's a bad day, I'm just pretty much in bed with no energy to move. This is most often due to a headache or over-doing it the day before, or a cold.
Sometimes I need to go to bed by 9. Sometimes I'm up till 10:30. Sometimes I wake up every couple of hours through the night (people with much more experience than I say that can be due to low cortisol), sometimes I'm out like a light for the duration.
It's pretty challenging because each day has to be taken on its own merits. Each day has its own unique set of circumstances, to which a normally functioning adrenal gland responds automatically, but requires awareness and adjustment for those with adrenal insufficiency of any kind. Each day is its own adventure. And that is my new "normal."
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