The Wind in My Sails….

is gone.  But that isn’t necessarily a bad thing.

In the days of sailing ships, crews could be stranded for days or weeks on end with no wind for their sails.  Areas of the sea near the equator were most likely to be without wind for endless days.  Sailors called the windless days “the doldrums,” and legends abound of sailors being driven mad by the sensory deprivation of endless calm seas which offered no visual, tactile, or auditory relief from the seas blending into the horizon.

The doldrums, however, can be a good place to rest from constant motion and threats of storms, fickle winds, and ocean swells.  They provide time to mend the sails and nets, touch up the varnish, refill the fish barrels, wash and mend clothing, and finish any number of chores for preservation and renewal of ship and crew.  And it when the chores are done, there is time and energy left for recreation.  A welcomed break.  A “staycation” of sorts.

So while my adrenal glad is providing insufficient “wind in my sails,” I am experiencing a sort of sensory deprivation…limiting social contacts and avoiding both good and bad stress whenever possible. Some folks might think that my withdrawal is symptomatic of depression.  But they’d be wrong.  Mostly I’m trying to avoid having to stress dose so my adrenal function has time to improve.  Life is good.  I am quite happy.  I am simply resting and relaxing as much as possible.  Giving my body some healing time away from the demands of an active sea. 

I am certainly not avoiding life.  These past months have been house-hunting months.  But I’ve spent a lot of time at home, quietly searching the Internet for homes and only venturing out to view the ones our realtors have pre-screened for us—a half dozen or so.  This week, we put a house under contract.  If all goes as planned, we will be moved by the middle of October.  We’ll delegate and hire out as much of the move as possible.  I’m sure life will be much busier after that with all of our grandchildren only minutes away.

After the storms and rough waters of Cushing’s Syndrome, I could get used to living on the calm waters of the doldrums.  Still, humans need some stress in their lives.

If only to avoid the madness…..

Balancing the Teeter-Totter

 

I wrote in an earlier blog that having Cushing’s Syndrome is like living on a yo-yo. You don’t have any control over what it does to you. Recovery is like living on a teeter-totter. But on a teeter-totter, you have some control and the goal here is to keep it balanced.  I’m getting a little better at it.

Cushing’s Syndrome takes a terrible toll on a body, but also on the mind and personality.  It’s no wonder many cyclic Cushie’s are wrongly diagnosed as bi-polar. 

It’s frightening to be emotionally out of control and not know why.  It worried and frightened my family too.  Many families don’t survive the emotional upheaval.  I thank God that my steroid-induced emotions were not stronger than my family’s ability to cope with them—especially before my diagnosis, before any of us understood what was happening.

I’m not experiencing extreme emotion anymore—at least not without cause.  It’s a welcomed part of recovering from Cushing’s.  My remaining adrenal gland is functional enough that I don’t need daily cortisol supplements anymore.  So I’m on a pretty even, and predictable, emotional keel these days.  Usually.  Most of the time.

From time-to-time, my cortisol reserves get depleted because I use them up faster than my adrenal is making them.  Little things can pile up into sufficient stress to make my cortisol low.  Things like having to leave the house several days in a row, road vibrations during a long drive, deadlines falling in on me, sudden complications to any activity .  It doesn’t take much.  The balance of my cortisol production and cortisol use is much more fragile than I’d like it to be.

When my cortisol gets low, I cry too easily.  I also get joint/muscle pain/weakness, diarrhea, nausea, vomiting, low cognitive function,…  These symptoms don’t appear in any particular order.

Living with only one adrenal glad that can’t always keep up with my cortisol needs leaves me with a couple of choices.  The preferred one is to control my stress to keep my cortisol needs within the limits of my adrenal production.  The second is to stress dose with a cortisol supplement. 

Controlling my stress means making mindful choices, planning ahead when possible, opting out when necessary, trying to establish and maintain routines... Each day’s activities must be weighed against the possibility of whether or not they are likely to overtax my adrenal function. Even good stress is stress. So I’ve had to miss some fun times as well as avoiding not so fun times.  If I know my adrenal function will not keep up anyway, and I can’t avoid the activity, I take a cortisol supplement before starting.

Stress dosing can get me through a stressful time, but it also suppresses adrenal function—a two-edged sword.  So I try to avoid it as much as possible.  Often this means living with symptoms of low cortisol as much as possible.  Non-steroidal anti-inflammatories, anti-diarrheals, and anti-nausea medicines help keep those symptoms.  So long as they work, I can sometimes avoid cortisol supplements until my adrenal catches up again.

My family has gotten pretty good at recognizing when things are getting too stressful for me and helping me adjust activities or stress doses.  And they honor my need for a lot of restful, low stress days following a busy or stressful day. 

So, in case you were wondering who is on the other end of the teeter-totter helping me keep it in balance, it’s my family.  After decades of Cushie living, learning to live a balanced life is a challenge, an adventure.  Balance takes a lot more skill and control.  Maintaining balance takes a lot of practice.  I could never do it without the support of my family. 

I thank God for them every day.